Have not published to the blog in some time

I have steadily had my prednisone dosage reduced to the point I am now at 5mg.

Dana-Farber is trying to find a happy medium between my pain levels and toxicity.

The Interleukin trial continues.  No huge changes there.  My skin has gotten better but joint flexibility and pain continue to be a problem.

As the weather is turning chillier,  pain levels are going up.

I also continue to have intermittent severe chills at night. These are pretty bad,  to the point where I have had to use extra blankets and a heating pad.

Got burned by the heating pad so going to have to be a bit more careful there.

Doctor's visit update

No real change for now. The increase in prednisone is helping with the pain so we are continuing with it at the higher level for now. In the next visit,  the dosage will be modified and will continue to be tweaked for a long time.  The idea is to scale it back enough to manage symptoms while minimizing toxicity.  We may eventually go to an every other day regimen. Doctor says it could take up to a year to find the right mix.  Eosinophil levels are high but expected due to the chronic GVHD. All other blood counts are in the green.

A shift in the trial

During my last  visit with the NP,  I brought up the idea of starting a new trial previously mentioned by the doctor. She was  to confer with the doctor while eligibility is confirmed. The issue with starting a new trial is that I will definitely see GVHD progression during the wash out period and there is no guarantee I will see results. In essence,  I could be worse off than  now and there would be no chance of going back.  No decision has been made as yet. Both oxycodone and prednisone dosages were increased. Prednisone was increased by a  factor of four. Let the irritability and bloating begin.

Update on Interleukin 2 trial - decision to make on where to go from here

Well. Not so usual a Dana-Farber visit after all. Looks like I will remain on the Interleukin-2 trial for a  little longer because it is helping with the fibrosis.  After my next visit,  I will likely be put on a different trial involving the B cells versus the T cells now.  What I am experiencing is apparently very atypical. The  pain is likely be linked to constriction/impairment of the nerves due to an auto immune reaction similar to lupus or  rheumatic.  I don't have the arthritic symptoms but the pain is on lupus levels.  A new change was made to the oxycodone which should help for night time but have to gut through the day.

A little more sunshine and maybe a new cancer

I have not posted much because things have been relatively static under the interleukin-2 trial but that changed today. 

I had a dental visit and the dentist found a spot on the roof of the mouth that may indicate possible mouth cancer. Lovely.

A return visit in a month will have a velscope (sp?) screen done to determine whether a biopsy should be performed.

I visit with Dana Farber tomorrow so this will be discussed with them as well.

Finally word on the trial start

Looks like we are making headway in starting the Interleukin 2 with T reg trial.

I heard from the coordinating nurse practitioner today.

We will be looking to set the work up for the week of June 9th.

The work up has to be within 2 weeks of the cells, so  exact dates are not yet available.

We should hear more next week.
 

ECP infusions discontinued - a new trial is being investigated

After meeting with my doctor at Dana Farber, it was decided that the ECP infusions are really not helping so new avenues should be explored.

We are looking to start a new trial called Phase I Trial of Regulatory T-Cells plus low dose interleukin-2 for steroid refractory chronic graft versus host disease.

This process starts by locating my original donor to have cells extracted.

This will then be used as a basis for a shot I will take daily.

Side effects of the shot will be some redness or soreness around the shot area but otherwise do not sound too bad.

The idea of the process is that it will provide the appropriate response to the system to reverse inflammation from the GVHD.

Assuming the donor cooperates, I should be able to begin this process in about a month.

If not, there are other trials I can be a part of.

We will address that should the issue come up but I am keeping my fingers crossed.

I was given a rather large information packet to go over so I am still learning about this.

Hope this helps.

The daily pain is sincerely getting old.

First day of ECP infusion

Today was my first day of ECP infusions.

Cathy and I got there for the 7AM start and things went pretty well.

We didn't actually get the infusion process started until about 8ish due to delays in getting a good line in.

I almost felt bad for the nurse.

It took another nurse and heating the arm before we were able to make any headway.

Things were relatively boring once the process started but it was nice to be able to log into work and keep busy.

Infusion finished at about 10:30 and there were thankfully no real side effects.

I was a bit sensitive to light but I have some special issue sun glasses to deal with the problem.

Orders are to avoid even indirect light from a window if possible for a day or so after treatment.

I also get to wear a bandage all day to control bleeding due to the heparin.

All in all, lots of fun.

News on ECP transfusions

I went to the Kraft Family Blood Donor Center this morning to have my veins evaluated.

They are good which means I get to avoid having a line put in.

Treatments start next week, Monday and  Tuesday.

I was provided a schedule running all the way into next April but this is likely not accurate.

When I go to my next visit at Dana Farber on 01/21/2014, they will evaluate my progress and adjust accordingly.

The plan for Monday, since it is my first treatment, is to go in and then work from home for the remainder of the day.

I should have an idea of how the treatment will impact me at that point.

Side effects of this process are largely minor.

- Tiredness because the infusion process makes  the heart run faster than normal
- Sensitivity to light. This is not a huge deal in the winter but will become something to be aware of in the summer. I was given a nice set of wrap around sunglasses for this. Standard sunglasses wont do.
- Larger chance of bleeding around  the days of treatment. This is not from the treatment itself but from the anti-coagulants added.

I was brought into the infusion area and it is kind of small.

Kind of reminds me of  a pre-surgery  waiting area.

No frills. I wasnt expecting  a spa but it is a pretty bland  area to be stuck in for several hours at a pop.

At least there is internet so it wont be completely boring.

The name of the pain does not remain the same

Dana Farber examined me this morning and they state that the diagnosis from the rheumatologist was incorrect.

The Stem Cell Transplantation Program Chief stated that I am having an adverse Graft Versus Host Disease (GVHD) symptoms that, if not treated, can cause some significant and life threatening problems.

Cool.

They wish for me to undergo a process called Extracorporeal photopheresis (ECP) to address the issue and reverse existing damage.

ECP is similar in some ways to dialysis in someways because my blood is "cleaned" and returned.

Using two iv leads, blood is extracted, mixed with some chemicals, flashed with UV light, then fed back in.

Sounds like oodles of fun for all concerned.

A name for the pain

My rhuematologist finally thinks he knows what is causing all of the pain, eosphenolic fasciitis. A more common name for it, thank you internet, is Shulman's Syndrome. Among its more charming aspects, it causes skin contraction, swelling, and a thickening of the skin. The constriction is the source of the stiffness/pain, loss of motion, and an orange peel like dimpling of the skin. A common treatment is to use medications that suppress the immune system to reverse the swelling. Because of my stem cell transplant and already impaired immune system, that is kind of a problem. For the time being, my prednisone dosage was upped from 5mg to 40mg which seems to have helped a little. I'll be meeting with Dana Farber and Brigham Womens on Tuesday to find out the next steps for this as well as having a bone density test. The bone test was already scheduled so it will be a busy morning.

Semi-good day at the rheumatologist

In a way, it was a good visit at the rheumatologist today. Analysis of the MRI images took earlier this morning show that I do not have Rheumatoid Arthritis after all. White areas around the joints show fluid build up around the tendons which is inducing the pain and restricted movement. For now, I am to continue on the prednisone while the doctor confers with Dana Farber. He wants to be sure there are no objections to putting me on methotrexate. Methotrexate is a commonly used for severe arthritic symptoms but, like in my previous case, is also used as chemotherapy drug at higher doses. This stuff has a lot of nasty side affects such as liver damage, lung damage, inhibiting blood cell production, and more so I don't really relish the idea of this. Here is to hoping we can side-step the problem through longer use of steroids. Can't believe I said that but the other medication is truly that nasty.

Joint pain..

The doctor reviewed symptoms and believes I may have Rheumatoid Arthritis but needs to determine the exact nature.

My being on varied medications plus having gone through chemotherapy and a bone marrow transplant make a mess of my blood chemistry.

Standard RA blood markers may not apply.

I was put back on a lower dosage of prednisone to try and manage symptoms while a longer treatment plan is determined.

An MRI will be done on July 16th when I see the doctor next.

Not overjoyed about being on the steroids again but I guess it is better than the agony. Hope the water retention and associated side effects do not return. Lost 53lbs since being off the things. Don't want to backslide.

Results of May Dana Farber visit

Things went very well.

I have been taken off of Acyclovir, Bactrim, Folic acid, Lasix, and the multi-vitamin.

Numbers are very good with:

         Current          Range

RBC    4.56             4.2-5.6

WBC   11.7              3.8-9.2

PLT     374              155-410

White count is a little high but likely due to joint inflammation.

Dr. Antin wants me to make an appointment to see Dr. Helfgott in Rheumatology at the Brigham again.

He also wants me to start taking Tylenol and Aleve to try bringing down the swelling.

The expectation is it won’t help much but worth a try until Helfgott can look again.

What we are seeing in my hands is not GVHD so we need to start exploring other things.

My next appointment is with a nurse practitioner in November.

They will be having me do a bone density scan while here. The density scan is just an x-ray, not like the biopsy. It is not uncommon for decreased bone density after a transplant.

I got my last set of shots today, six in total with half to each arm. 

Since my immune system is now up and running, it is possible I could track fever up to 102 or so and significant soreness as a side effect.

I could also get a skin condition similar to shingles so I would want to restart the Acyclovir and let Dr. Antin know if that happens.

All in all, I am right where I should be and am pleased with the results.

Now it is up to the Rheumatologist to finally get a handle on the pain. It has spread from just the hands to the shoulders, hips and even toes. If this is arthritis, wow.

Results from March quarterly Dana Farber visit

Things went very well today and they were very pleased about the weight loss.

Blood work was solid with

RBC = 4.55  (normal is 4.2 to 5,6)
PLT = 331 (normal is 155 to 410)
WBC = 11.3 (normal is 3.6 to 9.2)

White blood cell counts are a little high but to be expected because I am fighting the tail end of a cold.

The doctors took me off the prednisone which is fantastic and they are finally doing something about my hands.

I received a script for a med to help with the fluid build up in the hands which is causing them swell, feel stiff, and generate pain.

The swelling is actually giving symptoms to carpal tunnel. Sweet.

Lastly, since this is my 18 month mark, I got the second Hep B shot.

I'll be getting the third and last Hep B in my next visit at the end of May.

All in all, very pleased.

Well this is new

GVHD is branching out in its symptoms. Over the last few days, the entire surface area of my scalp has become seriously painful to touch and even bending over makes it hurt. It is slowly getting better but it is still nasty right at the base of the skull and on the forehead. Weird.

GVHD related pain has been severe of late. If I didn't know any better, I'd swear I'd been worked over by a baseball bat. To be fair, I have not been taking my Lyrica like I should but damn this is intense. On the upside, I have been able to drop some of the weight. Down 13lbs from the official weigh-in at Dana Farber but still lots to go.

Latest visit from Dana Farber

I visited Dana Farber today for my quarterly visit and things continue to progress well.

The red blood cell, white blood cell, and platelet counts are well established in the normal range.

The doctor has also dropped my prednisone dosage from 20mg to 10mg which is nice.

In a month, I call them and have my dosage dropped to 5mg.

The goal is to take it slow at the end here because the adrenal glands have atrophied.

What is really nice is that I can now go to the gym.

The weight I have gained while on the steroid is a real problem for me and I look forward to shedding it as soon as possible.

During next visit, I should be getting the next series of immunizations.

An update from Tuesday's visit

Tuesday's visit was very good.

My numbers continue to be rock solid with the exception of the WBC count.

The WBC is a little high but that is to be expected while on prednisone.

Speaking of prednisone, my dosage was lowered from 40mg to 20mg which is nice.

Hopefully after the next visit, I will be completely off the stuff.

My visit schedule has been altered now from once a month to once every three months.

That is a welcome change but a little sad because I finally got the bus/train schedules down to a science.

We covered my pain issues and we are moving from the neurontin to a new drug called lyrica.

I looked over the side effects of the stuff and it looks to be almost as nasty as the prednisone.

This better be worth it.

At any rate, things are doing great over all and things are slowly returning to normal.

Just a quick check in

I see the doctor again on Tuesday so I will get a new blood work done.

 

Last time I was there, the EC count was perfect but I think that has changed.

 

Pain has come back with a vengeance so I expect the inflammation markers to be high.

 

The last few days have been pure agony in the hands.

 

Other than that, things are good.

 

I feel great and am largely back into a normal routine, 

Dana Farber visit - doing very well on all fronts

More good news from my latest Dana Farber visit.

Red blood cell coujnt is 4.63 in a range from 4.2 to 5.6.

Platelets are 220 in a range of 155 to 410.

White blood cell count is high at 20.4 in a range of 3.8 to 9.2 due to the steroids but that will balance out as the dosages decrease

Speaking of dosage decreasing, I can now drop my prednisone dosage down to two tablets a day as of now.

This will help in alleviating the bloating and allow me to start losing weight for a change.

I  got a series of vaccines today and I was told I can ditch wearing a mask and gloves everywhere.

I still need to be smart about it, purell or washing hands frequently and no handshaking for instance.

Next appointment will be on the morning of September 11th.

Post treatment dental exam..

All things considered, the visit wasn't too bad.

I was expecting full x-rays but that didn't happen.

All we got was a lot of poking around for signs of GVHD and then a thorough cleaning.

Got a clean bill of health so all is good.

An unexpected jaunt to Dana Farber

The lowering of my prednisone dosage finally has caught up with me.

Pain in the hips/hands (neuropath) have come back in force over the last few days.

Rather than increase the prednisone, the decision was made to put me back on the Neurontin at my previous dosage.

The pain return is not entirely unexpected but I do not want to go back on the oxycodone again.

I've also been experiencing some dizziness/lightheaded-ness when getting up.

The doctor called this orthostatic hypotension and can be caused either by change in position or medication.

I go back for my next scheduled visit on the 14th.

Dana Farber Visit Today

I met with the doctors today and my counts appear to be rock solid.

Red blood counts are at 4.36 where a normal range is 4.2-5.6.

Plateletts are at 200 where a normal range is 155-410.

White blood cell counts are at 16.2 where normal range is 3.8-9.2.

The WBC's are a bit high but this is to be expected because I am on prednisone.

Basically the numbers are all exactly where they should be which is fantastic.

My prednisone dosage is being lowered from 80 down to 60 which is great. The prednisone has fixed a lot of things but it is causing charlie horse effects in the legs, irritability, jumpiness, bloating, etc. Lowering the dosage will go a long way towards lessening the effects but there is a chance some of the GVHD and neuropathy issues will return. We shall see. According to the doctor, my weight has stayed pretty consistent which is odd. Typically, someone at my dosage of prednisone wil gain 50-60 lbs easy. My life style changes have helped to keep things in check. As the dosages continue to drop, the weight should go with it. It would be nice.

The doctors have also discontinued my use of neurontin. Really sorry to see that one go. That means 6 less pills a day which is nice. To be honest, I am not sure how much benefit we got out of it but it may need to be revisited if neuropathy returns. 

I was supposed to get vaccinated again today but that has been pushed off to the next visit in mid August. The doctor didnt want to add that to the mix with all the medication changes being implemented.

All in all it was a good visit plus I got a handle on how to go direct from the office to Dana Farber and then home using the T.

With careful appointment planning, I can reduce out-of-office time to an absolute minimum which I also like. Getting from the T locations means a good amount of walking but its all good since the pain is no longer there.

Dana Farber visit today and the news is great

I met with my doctor at Dana Farber today and things couldn't have gone better.

Blood levels continue to remain at normal levels which is fantastic but what's even better is that the eosinophil levels have gone from a staggering 18 down to 0.

Being on the prednisone really has helped as far as the GVHD, skin constriction problems, and overall pain.

Side effects of it have been puffiness and an increase in irritability but that's to be expected from a steroid.

They have decided to lower my dosage of prednisone with the goal of slowly pulling me off of it but there is a chance the joint pain will come back as they do.

Hopefully a nice balance can be found somewhere on dosages versus pain.

On the up side, I have been cleared so I no longer have to wear a mask and gloves all the time.

They are still necessary for at-risk crowded areas but I that is a judgement thing.

I can also now go to a restaurant and actually sit to eat.

Up till now,  I have been restricted to ordering in so this is a nice treat.

I had hoped they would take me off the neurontin but they don't want to make too many medication changes at the same time.

This will be re-evaluated when I see the doctors again on July 10th.

I am also scheduled to get my next set of immunizations at that time which is very cool.

This was a very good visit.

PT today - ow

I went for my first physical therapy session today.

The therapist, lets call her Olga, seems to have been in an unusually enthusiastic mood today. 

With a smile on her face and an over abundance of zeal, Olga proceeded to turn me into my lower back and legs into pretzels.

Olga flipped into high speed on the calves while be-bopping to the piped techno/dance music.

 Thankfully someone changed the radio station to something more reasonable. :)

People. Katie Perry does not equal quality music. Just say no.:)

The strength exercises were a piece of cake but the stretches were something else entirely.

I had no idea that much movement range had been lost from essentially being under house arrest so long!

For anyone stuck in the hospital and then home for an extended period of time, stretching is clearly a must so get to it. It will help speed recovery and reduce joint pain.

Having this done is a good thing and I'll be doing the practice exercises religiously to get back to range.

GVHD appears to be coming back

Over the last few days, I have been experiencing some GVHD symptoms all over.

My tongue and throat have been raw.

The eyes have been itchy and swollen. They get better over the course of the day but I have been waking up to find them crusted shut.

Now I'm developing irritated skin across the back.

None of this is worth calling the on call doctor for but we will be having a call tomorrow.

Physical Therapy and a few odd bits

Finally heard back from my physical therapy place this morning.  They were able to get authorization from my insurance company so we start later this week. I don't understand why it took so long to turn this around but I guess progress is progress.

On a more immediate note, a new behavior has reared its head over the last few days. I am not sure if this GVHD related or not but I have been waking up with my eyes encrusted. It is almost reminiscent of what you get with pink eye but I don't have that. The eyes are dry but clear.  I sent a message to my nurse practitioner on it so we will see what we see.

I also asked about whether I can stop taking the neurontin. I started it to help with the pain but I am no longer sure it did me any good. The only thing that has kill the pain is the prednisone. Here is to hoping the nurse practitioner or my doctor say yes on stopping. It would mean six less pills for the day which is nothing to sneeze at.

Another stroll with the youngins - dare I say it

Ben, Nyx, and I all went for a walk to the park. I was hoping Ben would have some friends to play with but no such luck on Memorial Day. That's okay. We took a long walk around the school playing field then a trip to the pond. The walk was not as ambitious as yesterdays but Nyx loved romping around in the grass. It was a beautiful out and the breezes were great. What was even better was I had a second day of no pain. I could feel a slight bit of twinging in the hips at the very end but nothing significant and certainly not the debilitating "please shoot me now" pain it used to be. I cant do a brisk dragging a 4yr old and a dachshund around but it was enough for now. The exercise is much needed from being cooped up so long.

A little exercise with my younger folk - no pain!!

Took my son and Nyx to the park which then evolved into a walk around the pond.

The exercise was good for all involved but it may have been a little too much for Nyx. He petered out and wouldn't walk anymore towards the end so I had to carry him for the last 1/3 of the walk. I think that made my son a little jealous.

I was really happy the walk didn't hurt the hips like the last few times. I guess we are making progress there. Now I need to cool off and let the skin relax because I think we are a tad cooked.

It was really good to get out for a little fresh air. Hope to do it again but preferably when it is a little less hot.

RI ANG Air Show

Didn't realize the RI ANG Air Show was coming up so quickly. June 16th weekend. Woo hooo!! Si what if I have to cover up head to toe in clothes and a sunblock. It will be worth it.

A day at the Lance Armstrong Adult Survivorship

Today started with our first appointment at 8am with a psychologist to go over how we are coping with the illness and recovery. According to the psychologist, they deem us well adjusted and doing well considering all the challenges that have come our way. Clearly they don't know me very well. My name and "well adjusted" don't exactly come up often in the same sentence.

We then went to see dermatologist to discuss long term skin care, We discussed some of the tightening and pain issues but feel the prednisone is the right treatment for now. Moisturizer, hydrocortizone, and sun block are now a must. Not sun screen. A block. Between the normal skin issues associated with BMT and my being on prednisone make my skin extremely vulnerable.

We visited a dentist to evaluate any GVHD issues. Turns out I have a slight case of GVHD at the low cheek line but nothing that I had outright noticed. Since I am on other treatments and it is not irritating, we are sitting tight for now but will keep watch.

The optometrist visit was also pretty vanilla. We know we have GVHD in the eyes and the eyes are dry which is typical for a post BMT patient. The magic prednisone should help with it but we need to be careful for long term use can contribute to cataracts. We should get a local optometrist to get a check up when I have time to do an eye dilation. Today was a whirlwind day so there was no time for anything more than a cursory exam.

Lastly, I had my first physical therapy visit today. My rhuematologist had set me up with this to help my hip and knee pain. He felt that my glutes were probably weak which was causing the pain. The PT specialist evaluated me and said that I was plenty strong. The muscle groups are very tight which may be contributing to the issue and they will work that to see if it helps.

Today's update from the doctors

It was a loooong data at Dana Farber, Brigham and Women's, and associated satellite facility. We had a blood draw, EKG, visit with the doctor, pulmonary test, bone density test, and an echo-cardiogram to finish up the day.

The blood draw was a little more than average at 11 vials. Certainly not my personal best but a good amount for a monthly exam. What was annoying was that they were VERY late. This delay compounded with  delay creep in other appointments caused a lot of running around and being over an hour late in some cases.

Anyone who knows me how severely anal I am about being on time so this really ticked me off as the day progressed.

Anyway. The visit with the doctor, really NP, was a bit more eventful. When we first got into the room, we were given a list of medications and allergies but only the allergies were listed. This made me all kinds of excited with the idea that I was getting pulled off the medications. Clearly I assumed wrong because the NP set me straight right off. Someone merely f'ed up. We then went on to discuss my pain. Eureka. We finally have an idea why. Turns out my arm and hand skin are getting EXTREMELY tight which is causing compression on the blood vessels, veins, muscles, etc due to GVHD. This causes fluid to flow and get trapped in the hands which causes the swelling and restriction in the above things. This explains why the pain can never be pinpointed to any one area and why cold/hot treatments fail. This is also why there is no evidence on the x-rays of arthritis. We have also decided that I now have an excellent case of GVHD in my eyes with my right eye being the worst. It has been decided that the steroid prednisone is the way to go. This will hopefully help with both problems. Taking the steroid has some serious side effects which I wont go into. All I can say is I hope not to be on it very long.

Last few days have been a treat

I thought the neurontin was helping with my joint pain but clearly that was wrong. The last few days have been pure agony from the hands up to the shoulders. On the usual 1-10 pain scale, they have been floating at around an 8. I am thinking it may have to do with the weather but who knows. I have been using heat but that hasn't helped. I have my monthly at Dana Farber on Tuesday. This will definitely be discussed further.

Lance Armstrong Adult Survivorship Program

According to Dana Farber Cancer Institute, I am supposed to go to the Lance Armstrong Adult Survivorship Program on Friday May 25th  to address long term complications of the bone marrow transplant.

I have my normal Dana Farber visit on the 22nd but this will be expanded upon to include bone density, pulmonary, echocardiogram, EKG, and a larger array of blood tests.

This is actually pretty good news.

I am one step closer to returning to my normal life.

On display - one show only

I took my daughter to Assabet Technical and Vocational school tonight for orientation. The staff was great and they were very high energy. They even did a cooking demonstration in the auditorium while the orientation was presented. Many of the kids were allowed to help with the cooking which was very nice. Lots of information was available both on the schooling and they many sports/clubs Lauren may be interested in. This sounds liike a great opportunity for her. Going out in a mask and gloves was worth the look of excitement on her face.

Visited rheumatologist - working my ass off

Okay.. I couldn't resist the post title.

End result of today's visit with the rheumatologist is that x-ray results of the knees and hips show no issues. Additionally, supporting blood work does not show any other ear marks that the joint pain is being caused by an immune system reaction. The doctor surmises that my being relatively inactive since the BMT has caused my gluteous maximus, gluteous minimus, and supporting connection tissue has gotten weak. Lovely. I have been prescribed physical therapy to literally strengthen my ass. If you know me and my twisted sense of humor, you can just imagine the struggle I endured during the office visit.

Todays visit at Dana Farber had a surprise

Today was my monthly visit at Dana Farber for levels checks and so forth. All the counts continue to be strong.

WBC: 8.4
RBC: 4.23
Hematocrit 41.8
Platelet: 192

EO counts are still high which could indicate I am bound for a chronic GVHD hit but I am hopeful.

What was really cool was I got my first series of immunizations today.

These were the Haemophilus Influenzae Type B (HIB), Pneumococcal Conjugate, and the Diptheria Tetnus and Pertussis.

Side effects from these should be minimal because my immune system is still impaired.

Another set of immunizations will be done at the 1 yr mark and then again at the 15 month mark.

As time goes on and the immune system builds, my reactions to the vaccinations will become more pronounced.

Something to look forward to I guess.

On the upside, this is a nice indication that things are beginning their return to normal.

Today's visit at the Brigham

My local oncologist really fast tracked things for me to see a rhuematologist.  I spent all morning at Brigham and Women's to see a specialist there. Lots of contortion prove what we know. I have pain and movement of the left leg is limited in certain ranges. More blood was taken, eight vials I think, and they sent me to radiology for some some films of the knees/hips. Hopefully this will shed some light on what is going on. On the upside, the neurontin has really helped with the hand pain so I have been off the oxycodone for over a week My head no longer feels like packed cotton but I want to sleep a lot. This will decrease the more I get used to the stuff.

Visit with the local oncologist or "I gotta new drug"

I saw the local oncologist today as a post hospital stay follow-up. He recommends I go see a rheumatologist at the Brigham instead of messing around with the UMass system. The doctors there are used to dealing with cancer patients and know to fast-track certain things as needed. He also is starting me on a new medication called Neurontin. It is used for a lot of things but essentially it changes how the body handles pain. It isn't a cure but it will help while we wait for the rheumatologist to make a more detailed evaluation on the root cause.

Hospital visit - outta here!

The doctors came by this morning and said things look good so I can go home. I am very happy about that. They take really good care of you here at Dana Farber but I miss the family and my own bed.

We had a little bit of drama with the IV line they originally put in,. The line got occluded and my skin was reacting badly to the bandage glues. Different bandage types and tapes were tried but nothing really helped.

I am really glad my stay is short otherwise it could have been worse.

Skin issues are not uncommon after a BMT and I have been lucky.

Back in the hospital - a whole lotta nothing

My stay here at Dana Farber has largely been uneventful which is good. The temperatures I experienced Sunday night have not come back and blood cultures continue to be negative. If things continue like this, I expect to be released sometime tomorrow afternoon. I had hoped they might be able to squeeze in having a rhuematologist look at me since I am have such a long wait with my local one but that does not appear to be in the cards. Not a big deal. I will still want to see my local oncologist when I get out of here so we can get up-to-date on progress.

In any case, things are good and I am itching to get back home to my own bed and knee deep in the chaos. Now it is just a matter of waiting.

Back in the hospital

Sunday evening,  I got very cold to the point of shivering and clacking teeth. I tried a hot shower to boost my core temp but that didnt work. Shortly after that, extreme nausea set in. Not to be gross but I threw up which seems to have helped clear the nausea but my temperature spiked at 103.4. We called my doctor at Dana Farber and he had us go to our local hospital for cultures and an x-ray. They didn't do much more than give me tylenol and send me home. I spoke to my doctor at Dana Farber this morning and she said to get admitted..  Now.  Considering my condition, she feels this can go from bad to worse in a heart beat so it is best to come in to be checked out.. I will be having another x-ray and set of cultures done. They will also be putting me on an antibiotic mix to head-off anything. The plan is I will be staying overnight. Glad I thought ahead to bring spare clothes and stuff. Right now I am in a "flow" room. Shortly I am to be moved to the same tower I was in when I had the chemo and stem cell transplant. Yee haw.

Latest from Dana Farber visit - potential liver issues

Blood level counts continue to do well with a little fluctuation here and there. Platelets have gone down a little but it is not a huge concern.


White blood cell count -7.5    (normal is 3.8 to 9.2)
Red blood cell count - 4.27 ( normal is 4.2 - 4.6)
Platelet count -146 (normal is 155 to 410)


What are of concern are my high easinophil and easinophil ABS counts.


Their presence is not normal because they do not develop unless the body is fighting something like tissue inflammation or allergic reactions


This may caused by the GVHD hitting my nails or it could be something more.

Liver functions are off but could be related to the easinophil counts. 

Additional blood tests were in order.

I also called my primary care to see if we can get the rhuematology results turned around.

What they have to say will help determine if the joint pain is arthritic or GVHD.

 Counts are high enough that I can try ibuprofen to reduce swelling but i can only do it once in awhile and at low doses.

Any more and it will mess with my counts too much.

Oh how the mighty have fallen - nail polish

Due to the thinness and weakness of my nails, it is now necessary to put on a nail hardener.

It is more accurate to say my wife put it on me since I have absolutely zero experience doing this.

After managing to chip and split nails putting on a sock, the message was received.

Its baaaaack.

I guess all good things must come to an end. I went about a week or so with no real joint pain.. Guess it was just resting because it has come back with a vengeance. Just took two oxycodone's to help mitigate it somewhat. I know it is going to make me want to sleep but it is better than the alternative.

Dana Farber Day - latest levels are fantastic

Today's blood work results were spectacular.

                                                             

                                                             Reference Range

White Blood Cell Count         6.7                (3.8-9.2)

Red Blood Cell Count           4.47               (4.2-5.6)

Platelet                              167               (155-410)

Everything is now showing in the normal range!

Things were even good enough that I no longer need to take the tacrolimus immune-suppressant.

Very excited about all of this.

Cold - day 2

Things seem to be doing better today. There is no fever and my chest congestion is gone. I do have nasal congestion and drip but that is about it. I don’t have aches and pains beyond what I normally have and there are no skin rashes or similar issues. 

Looks like we have a nice cold going on - not good

Having all the typical symptoms of a nasty head/chest cold. I called Dana Farber and they authorized my using over the counter medication to try and treat it but they are only willing to wait a day for signs of improvement. Should it go any longer, they are going to want me to go in for a once over. With my immune system impaired, it doesn't take much for this to turn into something more severe really fast.

Rheumatology visit

The visit was about what I expected. The doctor checked the joints but my large hands make detecting swelling difficult. Hip movement in certain ranges is restricted which would explain the pain there. The problem is they cant tell right now if the pain is due to wear and tear or inflammation. I had x-rays done of the hands and that should reveal inflammation if it exists. If it isn't there, then we are likely looking at a form of osteoarthritis. If that is the case, then the best I can hope for is treatment for the pain. I wont see the doctor again until May which I am not happy about. I plan on calling them in a week or two since the x-rays would undoubtedly have been reviewed by then. Maybe i can arrange to get in earlier. The pain is pretty rough even on the best of days.

Today's visit to Dana Farber

The visit was largely uneventful. Levels are still on the rise but the increase is beginning to slow down now that normal range is approaching. GVHD is under control and only lightly showing on the back. My nails still look like hell but it was explained as swollen nail beds. It will eventually sort itself out in time.

The big issue of joint pain is being deferred to the rhuematologist like I expected. The reasons for having joint pain with MDS have been removed so its source is something else we need to find. The rhuematologist will have to consult with Dana Farber for any medications because we dont want them to interfere with my recovery. A favored drug they use is methotrexate which would lower my counts..

All in all not too bad and pretty much what I expected.

a little good news on the pain management front

My local oncologist took pity on my pain and prescribed some oxycodone. Cant take them during the day because it will make my head fuzzy but it should take the edge off enough that I can sleep.

Visit with the general practitioner

At my Dana Farber doctors request, I met with my general practitioner this morning on my joint pain.

Nothing was really done to help me immediately but she is lining me up to see a rheumatologist.

The hope is they can figure out what is going on or at least put me on something to take the edge off.

Over the counter medications and home remedies (such as heating pads, tylenol, etc) don't touch it.

Oxycodone helped somewhat in that it let me sleep but you cant really take that during the day as it puts your head in a fuzzy state.

Will be seeing my local oncologist on Monday and the Dana Farber doctor on Tuesday.

Maybe one of them can help.

Would be nice to go to sleep without pain for a change.

As the MDS turns...

New Graft vs Host symptoms..

All the calluses on my feet have sloughed off.

My feet areas smooth as a babies backside and just as red/irritated because there is nothing there to protect them while walking.

Towards the end of the day, it is almost like walking on a burning rash.

Good times.

GVHD .. branching out I think

Woke up with the stomach in knots and some serious hand joint pain. I've been expecting the joint pain but the stomach issue is new. Hoping this is not a new branch of the Graft Versus Host Disease. Nails are also darkening and showing a growth line again. Wonder if that is related to the meds. i am still waiting to get the prescription for my tacrolimus cream due to approval delays with the insurance company.he steroid lotion i was given for the skin related GVHD symptoms and that has made a huge difference.

Dana Farber visit not exactly what I had hoped

My blood levels (red, white, platelet) continue to improve but there is bad news.

I have the beginnings of GVHD which accounts for the skin sores/rashes all over plus excima like cracking on finger tips.

I was supposed to go off my tacrolimus (anti rejection drug) today but that is delayed now. 

New meds, a steroid cream and tacrolimus cream, are being introduced to help. 

I was also informed to expect arthritic symptoms across all joints.

Something to look forward to I guess.

Dana Farber tomorrow

Oddly enough I am looking forward to going to Dana Farber tomorrow morning.

I am very curious to see where the current numbers are.

In a few categories, I was at or approaching low normal which is a nice change of pace.

New developments

I have not been posting much lately because there isn't much change.

The old/black nail locations continue to grow out but the nails are super brittle.

The other thing that's new are circular sores on my arms and legs.

Each is about a quarter to half dollar in size and is shaped almost like ringworm.

The problem is dry skin.

Need to get past the problem by using moisturizer religiously but hate doing it.

Ah well.

Better get to it else the wife will start yelling.

Dental visit scheduled

Off to the dentist at 4. My lower left jaw has been aching really badly. It is sore to the touch and it hurts like hell to bite. Hoping it is nothing major like an abscess. i spoke to my NP and she said they prefer invasive work be avoided due to risk of infection.

Where we are for levels

My wife did a comparision between now and before the transplant and they are on a steady rise.  

When I went into the hospital, before the transplant, levels were...

white blood cell-2.5
hemoglobin-11.8
hemotacrit-35.8
platelets-41

As of yesterday, white blood count is now at a low normal of 4.3 (the lowest being 3.8 before it's considered a abnormal low).

Hemoglobin is 12.9 (with 13.2 being the low normal), hemotacrit is 36.9 (with 38.4 being the low normal) and platelets are now 120 (with 155 being the low normal). 

Today was a very good doctor day!

We had a VERY good day at the monthly Dana Farber levels check and consult. White blood cell counts are in the low but normal range and hematocrit/platelet counts continue to rise. What was cool though is that I've progressed enough that several meds are no longer needed. Additionally, the tacrolimus medication i take for anti-rejection has also been dosage reduced. Very happy about that one because the tac is why my hands tremor.

Its always something new

Looks like I might be progressing to a new stage.

Heartburn is more common and I now think pepperoni is too spicy.  Pathetic.

I also am noticing a new form of discoloration on the nails,

The black is fading away but the true cuticle and lunula are turning a chalky white.

I see my local oncologist on Wednesday so it will definitely be brought up.

Pain in the hands is sporadic but really intense.

Pain has also moved to my feet and knees but that could just be the.plantar fasciitis I've always had.

Hard to tell what causes what.

Today's visit - good news

Today's visit at Dana Farber was pretty good.

My levels continue to slowly rise and I have hit my 90 days out from transplant.Woo hoo!!!!

I can now somewhat expand my eating options (aka...  pepper, i missed you so) and even order in food.

Additionally, my tacrolimus anti-rejection drug is being reduced from 1.5mg to 1mg which means I should see a reduction in hand tremors.

Biggest news is with the eyes. It is definitely not GVHD. If it were, things would be steadily getting worse and they are not. Sometimes it is not bad. Other days, a crowbar is needed to open the eyes. In any case, no GVHD for now which is huge.

The eyes have it

Woke up this morning and my eyes were practically welded shut. After prying them open, I noticed the face and upper/lower lids were very swollen. I've had this before but it seems to getting worse. Something to talk about when I go to Dana Farber this Wednesday. I've been reading on the web about this and it can get really nasty. If treated with steroids, my face will get really bloated plus a chance of cataracts or glaucoma. Backing away from any more web searches till I know more. Too much information can be a bad thing.

Latest update from Dana Farber

I went to Dana Farber today and the the news is largely good.

Blood levels are doing well.

My only new thing is my eyes and face are getting puffy.

The nurse practitioner I spoke to is not 100% on the cause.

It could be graft versus host or I could simply be developing allergies after the transplant.

She is evaluating my drug levels and will give a call tomorrow based on the results.

Depending on the results, I may be getting my tacrolimus dosage lowered.

That will be nice because it will help lower my tremors.

News update

Hi everyone,

I haven't updated in a bit because there hasn't been much new to report.

Pain is gone now which is always nice.

Finger nails are beginning to turn black. Between that and the bald head,  I'm beginning go goth. :)

Tremors are sill there but they are something I will have to live with while on the medications.

Hair is continuing to jump ship. Eyebrows and eyelashes are getting very thin for example.

The biggest news is that I got the Hickman line removed from my chest.

Update to todays Dana Farber visit

I got a call from the Nurse Practitioner...

My chemical levels are a bit high so they are having me lower the tacrolimus daily dosage from 3 mg twice a day down to 2 mg twice a day.

The theory is that the tremors may stop or at least decrease in frequency with the dosage lowered.

It would be nice.

I was also asked to move from taking oxycodone's to 600mg ibuprofen on the idea that pain will go down as inflamation   decreases.

I'm not really sold on the idea that ibuprofen will do much but it is a wait and see I guess.

Dana Farber visit of the week

Went in for the usual blood draw and a visit with the nurse practitioner.

I don't have the exact counts in front of me but they are looking very good according to the nurse.

She apologized regarding the hand tremors but re-affirmed that my immuno-suppression drug tacrolimus was the source. We wont be looking to get off that until at least my 100th day post transplant.

The cuticles on each nail are starting to hyper-pigment to the point they are turning black.Nurse says the nails  could remain black a very long time and that it is even possible to lose the nails. Lovely.

There is concern about Graft Versus Host Disease and my joint pain. If one of the blood levels comes back high, I may get steroids to help.

My doctor decided to not do steroids last week but may change his mind based on this weeks number.

Should know later today.. I hope.

Today's Dana Farber visit

The levels are continuing to improve.


White Blood Cell Count   : 7.5      Reference Range: 3.8 to 9.2
Hematocrit Count          : 35.5    Reference Range: 38.4 to 48.2     (currently low)
Platelet Count              : 138     Reference Range:  155 to 419      (currently low)


My hands continue to tremor pretty intensely. A good object lesson on this was that I had a really hard time putting toothpaste on my toothbrush. Wow.. Practically had to pin my arms to my chest to make progress. The tremors are a side effect of one of my meds and should go away once I'm done with them. Of course, that will take about a month and the tremors are likely to get stronger. 


The all-around itchiness and intense joint pain are apparently precursors to graft versus host disease. I have oxycodone for the pain and, bless her, the nurse supplied me with better meds for the itches. Using steroids to alleviate the problems was discussed but it is dangerous to do this close to my transplant date.Out of all this, the itch is the worst!

Just when you think things are going your way - wrong

Starting last night, the joint came back with a vengeance.

To say it hurt is an understatement. Even with oxycodone helpers, the pain was still very much there.

Okay.. I can deal with the pain but now we have a brand new symptom.

My hands wont stop shaking and they feel a little tingly.

I sent a message to my doctor and nurse practitioner but no response back yet.

May not really be worth chasing them today anyway since I go to Dana Farber tomorrow for my weekly checkup.

Hope this nothing. I really don't need another complication.

Doctors visit - discharge day +11

Went to Dana Farber for blood work and a visit with the doctor.

Over-all, things went pretty well.

White cell and platelet counts continue to rise.

The hematocrit levels went down a little bit but they tend to fluctuate a bit.

The doctor states I am on track and numbers are about where they should be.

If things continue as they are now, I will have to go back on a monthly basis instead of weekly.

That would be great!

Had first doctors office follow-up on Friday

The visit was with a nurse practitioner, not the doctor, but things went well.

My blood counts are exactly where that should be considering I am 6 days out from hospital discharge.

The white count dipped about 10 points but this is normal considering they are not being goosed by the nupragen shots.

Platelet counts are doing extremely well and whole blood counts are holding steady to a slow climb.

Energy levels are still low but my mouth sore issues are almost completely gone.

Now if I could just get my tastebuds back to normal.

This is VERY promissing - specific stem cells for blood can be isolated!!

http://singularityhub.com/2011/08/03/scientists-bag-and-tag-the-stem-cell-that-may-create-an-endless-supply-of-blood/

Hospital Discharge date +1

First off,  {{Glad To Be Home}} !!

First nights dinner a prime example of how screwed up my mouth is. Cathy, at my request, made her sheperds pie. Normally a favorite of mine but taste was just off. Got to admit the potato was not too bad but everything was just wrong.

It was really nice to sleep in my own bed for a change and not get nudged awake every few hours for vitals checks. Felt a little weird but trust me, I adjusted.

The worst affront from my taste bud issues was my coffee. Nooooooo!!  It tasked like dark roasted formaldehyde. Come on!!

A nursing service came  by this morning to show Cathy how to saline and heparin flush my lines. While she was here, asked her to remove the bandages from the line site that was removed a couple days ago.

Got to admit that hurt quite a bit but it's over.

Napped quite a bit today.

Hospital exit date confirmed

Hi everyone,

I am pleased to confirm that I definitely will be leaving the hospital Saturday mid-day.

My levels are continuing to rise impressively which prompted the doctors to make that decision.

The next things were tasks on my part such as getting off the PSA machine that fed me morphine as well as the TPN nutritional line while I was unable to eat.

These have been done so .. Weeeaaaaaar Outa heeeeere

ups and downs. - plus some mind blowing news!!

Today was a mixed bag of ups and downs



With last night's first nupragen shot, the counts have begun to climb. The significant one to rise was my white count. just two nights ago, I was at 0.027. Today it was at 1.37! That is higher than the level I walked in here with.

Having a higher white counts is very nice because I can begin to heal all the soars and gashes in my mouth!!

My energy levels are still in the toilet but it I expect those levels to rise soon.

Dr. Antin, primary doctor for Dana Farber MDS, just came in and stated that I should be able to come home in the next couple days if things progress as they have been!!

I personally think that is ambitious but I wont argue.

Lots of news today

Lots of news today.

Go the results of yesterday's MRI scan of my skull. When viewed from a specific angle, you can see a small abnormality.

Doctors were not exactly expecting to find anything so it was kind of a surprise and judged it as insignificant for the time eoing.

I got a PCA drive delivery device on my IV tree now.

all I have to do is push the button and 1 mg of morphine will go straight to my blood stream.

I cant over do it because it is computer controlled and limited to a no more than 1 dose every 7 minutes.

That is still considerable more than what I had been permitted til now.