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.