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.

Fast replicating cells now being impacted - part 3

To counteract the mouth sore pain, I have been given two new mouth washes. 

One is just a saline and lidocane mix while the other is lidocane and benadryl. 

These help to numb things up enough that I function reasonably well.

The doctors have now ordered me on what they call TPN.

This means they are now supplying critical nutrition via one of my lines by bypassing the entire digestive track.

I will continue to try eating but this ensures I have everything I need while the sores attempt to heal.

TPN should only last for a few days which is welcome because I must be attached to an IV 24hrs a days while it is active. 

Fast replicating cells now being impacted - part 2

The impact on my fast replicating cells is getting more severe as my white blood cell and platelet counts continue to drop.

This means that I am beginning to develop some serious sores in my mouth. Both my cheeks have gashes about an inch long, blood blisters are forming on the inside of my lips, and the tongue feels like it has been raked by a cheese grater.

In an adult, a normal count is about 150,000 to 450,000 platelets per micro-liter of blood. I am at 9,000. 

I got a transfusion of platelets this afternoon so ideally this will bring me up enough that I don't bleed from places like the ears, noes, and eyes.

My total red blood cell count has maintained since yesterday so this is a good sign but it is still possible for it to fluctuate a bit. Today it was at 25 but if it drops below 24, I will need another transfusion.

Still exhausted beyond all belief but it is what it is. Naps are almost becoming the norm because of all the vitals checks, IV changes, blood draws, blood cultures, etc. 

Antibiotics have helped quite a bit on several levels but I am officially run down and am counting the days when I can finally leave. 

being sent off to have a CT scan of abdomen this morning

They want to confirm whether my gut pain is due to over active bacteria growth in the intestines. They will be putting me on another IV for antibiotics in addition to the two I already get. Unfortunately, because I have virtually no immune system, the antibiotics are limited in what they can do. The best they can really do is ensure it doesn't get much worse. 

Fast replicating cells now being impacted

The effects of the chemo are now starting to show up.


My gut is now starting to roil and turn like someone put an egg beater in my intestines.


Additionally, I am starting to get sores on the inside of my mouth and a sore throat.


The hospital has me on all kinds of rinses, glutemin drinks, and other mouth care to keep things under control or lessen its effects. 


The throat, mouth, and intestine are composed of fast replicating cells and those always suffer from chemo so all this is expected.. Just hurts for now.


Once my platelet counts go up, the effects should go away but that wont be for about a week or two.

Levels in detail

I knew levels were continuing to decline but I'm now able to watch it clearly. 


The nurses provided me a per day matrix showing the values. 


Platelet levels are declining fast. 


In another day or two, I will need to get transfusions for them as well as red blood cells

Transfusion and sonogram of legs - happy happy joy joy

The Hematocrit levels are still low so I am scheduled for another transfusion later this morning.


Additionally, my legs are getting swollen so I was wheeled off for a sonogram of the legs this morning.


The doctors are concerned about the possibility of a blood clot.


Odds of it are low but better safe than sorry.

Transfusion scheduled for today

My hematocrit levels are now low enough that I will require a blood transfusion.


Hematocrit levels measure the amount of red blood cells per volume in total blood.  


Normally the level should be about 45% for men and mine have sunk down below 20%.

Starting a second chemo regiment

Velcade is being started tonight along with Methotrexate.


Although Velcade is a chemo drug, it is really being used along with two others for control of graft versus host disease.


The chance of getting some kind of GVHD reaction is pretty high with an unrelated stem cell donor.


I am already on Tacrolimus for GVHD control so these trials should stack to help reduce the effects.

stem cell transplant complete

The stem cell transplant was completed at about 10:30PM last night.

I was hooked up for EKG and the drip was started at around 9PM.

Things started okay but the nurse had to slow the drip down because I was getting serious pressure on my chest.

Just got word on the stem cells.

Dana Farber didnt receive the cells until 5PM and is processing them now.


I expect to go on IV at 7PM with stem cell transplant at 9pm.

News on stem cell arrival

The cells will be arriving at Dana Farber for 2pm.

They will be processed which takes about 3 hours.

If all goes according to plan, I should be receiving them around 5pm this evening.

tomorrow is the big day

I am scheduled to get my stem cells tomorrow!

One step closer to getting better.

Makes the misery of chemo worth it!

off the iv pole for now

Still suffering from extreme nausea .  

The anti-rejection drugs are not too bad  but i am really getting tired of all the meds.

Handfuls left and right of pills. I will never complain about taking a vitamin again.

Attempts to eat have been hit or miss. 

Have lost 10lbs so far.

Fourth day of chemo concludes

The fourth day of chemo is ending and all I can say is, thank god.

Nausea and weakness are incredible but at least I haven't vomited yet.

Now we get to watch the already descending blood count levels continue to drop. 

Every day, I have blood drawn to check the levels. 

The levels continue to gradually decline. They will then plateau and then drop like a stone.

My weakness will be even more pronounced when that occurs but that means I will be ready to receive the transplanted stem cells.

One step closer to getting done with this.

third day of chemo - fun beginning

I am now beginning to feel the adverse affects of the chemo.

No vomiting yet but the stomach is roiling around and my desire to eat has gone down the toilet, so to speak.

Trying not to think about it too much so I don't psych myself into it.

I can easily see it beginning without too much effort.

The nurse came in and could see I was miserable and green around the gills.

They put me on ativan to help control the nausea.. It helps but it is making me sleepy. no big surprise there since ativan is also a sleep aid.

Second day of chemo - lead yanked out - restitched

For the most part, today was like yesterday.

I was on the anti-nausea iv and saline drips for about an hour before starting the first chemo.

While on the chemo treatment, things got a little interesting.

I was on my bed and tried to move to the side a bit to get comfortable.

When I put my hands down to support moving, I ended up trapping the left chest lead.

This popped some of the stitches, shredded some of the skin and backed out the lead.

The doctors were able to fix things and re-insert the lead but damn that hurt. A lot.

We were then able to proceed with the next chemo treatment.

Note to self. Always be aware of which way the leads are flowing.

Other than this, things are going relatively well.

Just exhausted all the time.

First day of chemo down!!

Well.. I had my first two bouts of chemo today and things are largely pretty good.

No nausia or other side effects so far.

Per protocol, I will now be on an IV all night to ensure I'm hydrated and flushed of toxins for the next round of chemo tomorrow.

Pills have been coming at me left and right. Clear ones, white ones, big blues, small oranges... wow.

They each serve a purpose but dont ask me at this point.

What pain i had from the catheter operations are largely gone now which is nice.

My biggest enemey right now is exhaustion.

A sleeping pill and oxycodone should help to ensure a good nights rest.

First night done in the hospital - chemo starts today

My first night in the hospital was a bit rough.

Between the pain from the catheters inserted in the chest, regular joint pain, and being woken every couple hours for stats, sleeping last night was more an idea than a reality.

A sleeping pill will be on the menu for tonight.

Much of the tape holding in the catheter leads has now been removed which has helped cut down on the discomfort a lot.

My chemo starts today at around 11AM.

Woo hoo

out of surgery

Finally out of surgery and in my room.

Protocols have started where everything is wiped down and everyone wears gloves/masks.

The room is Brigham and Womens Pod 6B and the direct number is 617-732-4159.

Got the call on when to go in

I will be going to Brigham and Women s for 7:00AM-7:30AM to start the admittance process.

From there, I will be getting a platelet transfusion before getting the two leads put in my chest.

Although I cant eat anything after midnight, at least they are not taking my coffee away till 6:30AM.

Cant go on without that!!  :)

Days are counting down

Tomorrow we will be hearing from Dana Farber on when we should get there for Wednesday.

I suspect it will be early in the morning.

Got to admit, a bit nervous but glad to get this started.

Got the medications regimen I will be under in the hospital

The conditioning regimen is high dose Busulfex and Fludarabine which starts 7 days before I receive cells.

The graft versus host disease prophylaxis medications are:

Bortezomib (Velcade)  which is the "study" medication on the trial. It's given intravenously on Days +1, 4 and 7.

Methotrexate, intravenous  dose given Day +1, 3, 6 and 11.

Tacrolimus (aka Prograf or FK506) will start Day + 3 and continue post transplant.

Fun fun fun..

Guess things are really low

When the RN went over the procedures and processes, it was mentioned that two leads would be inserted in the  chest.

These leads will have multiple channels for feeding, the various meds, and so on.

What is interesting is that my levels are so low, I will need a platelet transfusion prior to getting them put in.

I knew they were really low but wow.

I was also told that the anti-rejection drugs are going to play havoc with my head.

For the first couple weeks, something so simple as tying a shoe will be a pretty intense thing.

Guess this means I can read a book then pick it up again like I never read it. Cool!

Was really hoping to leverage the downtime to read manuals and otherwise catch-up but the brain will be checked out.

Bummer.

One positive note - so to speak

When having our discussion with the coordinating RN, we discovered that I will likely lose about 40 pounds.

I know it isn't for the right reasons but ...  Cool!

Long day at Dana Farber

We started the day with the doctor giving a brief overview of things and a slew of paperwork.

With all of the consent forms and such, you would have sworn we were buying a house!

Next came an injection to test for TB and a meeting with a social worker.

The social worker was actually very useful.

We found a way to get cards for gas as well as a way to get free parking for the duration of my stay at the hospital.

I then did a puliminary function test and lab draw.

The pulinary test was a non event but I was amazed at the lab draw. They took twenty one (21) vials of blood from me. Holeee crap!

The afternoon was spent doing an EKG, chest x-ray, echocardiogram, and an info session with the coordinating RN.

She was fantastic, going through every detail. We were given a calendar which broke down each thing that was happening and what I am likely to experience on a per day basis.

Dana Farber definitely has their act together.

We largely went from appointment to appointment like clockwork.

Looks like today is the day I stop using a razor to shave the head

I cut myself shaving the back of the head early this morning and it wont stop bleeding.

We have been using gauze and band-aids to deal with it but it just wont stop.

The bandages have been changed out about 4-5 times so far and every time, it starts and soaks through.

Looks like I will have to see the doctor in the morning,

This is embarrassing  because the cut is only an inch long and pencil line thin.

Latest level check

Levels continue their slow decline which is about all I can expect.

I am getting more and more exhausted which is really beginning to suck mightily.

Joint pain is getting worse. Going to have to start taking oxycodone on a daily basis.

FMLA dates set and submitted

The coordinator at Dana Farber has been really great.

She completed and sent the FMLA paperwork back to my office in just a day.

Got dates set for July 6th through Monday September 12th.

From that point on, I ideally should be covered under the ADA accommodation.

Still working to get that paperwork going but definitely progress.

Admit date has changed

Received a notice from Dana Farber this evening that the admit date is no longer July 8th.

It is now July 6th!

The oncology specialist is going to have me do a chemo based regimen (as opposed to chemo and radiation) which is why I am coming in a little earlier.

More on the anticipated dates

Heard a little more from Dana Farber this evening.

The coordinator reiterated that I will likely be in the hospital for 30 days so I should be home in mid August.

What  surprised me was her statement that I can probably anticipate returning around September 15th.

The coordinator states I will not feel well enough to doing much of anything, much less working, when I get out.

It is realistic but I am kind of bummed as well.

Hate the idea of being out of the mix for that long.

Hospital admitance date confirmed

Heard from the coordinator at Dana Farber this afternoon.

The donor has confirmed a stem cell collection from 7/13-14.

This makes my admit a confirmed July 8th.

Excellent news!

Results of latest level check

I went to the oncologist again this morning to check my levels and the news is pretty much all I can hope for.

Red blood, hemoglobin, platelet, and white cell counts continue to decline but not sharply.

Energy levels continue to decline and joint pain is get more and more intense.

Just walking to and from the train stain or going upstairs can be an "experience".

I have my magic pills, oxycodone, but they are not really an option during the day.

Taking enough to control the pain either puts me to sleep or fuzzes the head.

blood level news

Yes! Blood levels have remained largely constant. White cell count is down a bit more but not that significantly. If things continue at this rate, I should be in good shape until the transplant.

Have another appointment on June 1st for another check.

MDS Conference Agenda - video's linked on site for specific seminars

https://boston2011.aamds.org/Markslist/site/displayPage.do?siteIdCode=4HPPZNW0&pageId=39

Notice received from the Dana Farber Search Coordinator

The Dana Farber Search coordinator has requested that a donor (21 year old male) donate a blood sample and be evaluated to donate in July making my potential admission date July 8th.

Dana Farber will be in touch a bit closer to get additional testing, consents, teaching, etc.

Hope this date pans out.

I want to get this over soonest.

More match news from Dana Farber

The coordinator at Dana Farber reports that my other sister, Erin, also is not a match.

On the upside, a search of thr marrow donor database shows over 400 possible matched.

I guess they will now start reaching out to these people to have follow-on blood typing done to confirm the match and such.

The goal is still to get the transplant done in June or July.

Inched a little closer to a stem cell transplant today - good news!

 Should Erin not come up as a match, we have options.

The coordinator at Dana Farber did a database search and found viable first pass matches.

These donors would still need to do a blood typing to get a confirmation but this is definitely good news.

Post doctors visit results

Todays doctor visit was a mixed bag of results. 

My levels are holding steady or only slightly declining which means no Vidaza for now. This is good news because the side-effects of it are pretty nasty. 

Down side is we need to wait for results for Erin. Failing that match, we need to go to the unrelated donor database. I reiterated to the doctor that I really want to get this rolling for June/July so it would be great if they did the database checks now. 

They prefer to use a related match whenever possible so as to gain factors in the blood they may not be measuring against which is why they are not going straight to the database.

Another appointment is scheduled for two weeks. Hopefully I will know more then.

First round of bad news

Heard from Dana Farber and my youngest sister Megan is only a partial match. Hoping Erin's test works out better else we will need to search the unrelated donor database.

Another visit with the oncologist on Monday and dentist on Tuesday

Well that will be fun. More blood drawn as usual and another check of the dropping levels. Hope it isn't too bad. Kind of want to avoid taking Vidaxa but am  reconsidering. My energy levels are in the toilet. Just doing some basic housework for spring cleaning wipes me out.Also, the aches and pains are always present. Maybe getting on the meds will slow progression of the disease. Something to discuss.

Tuesday I need to see my dentist for a thorough exam and full mouth x-rays. The exam is to ensure I have no infections or underlying problems prior to my undergoing chemo.The chemo causes sores of the mouth and a lot of excess saliva among other pleasantness.

Tired .. really tired

It is getting really tough to deal with the complete lack of energy. 

Even after sleeping a full night, it is like you are moving up hill through molasses. Weird. 

Climbing the stairs is exhausting and even something simple like shaving the head is now a chore. 

Things still need to get done around the house so time to suck it up and just deal with it.

Pain .. its whats for dinner

and breakfast, and lunch.

What started my even getting diagnosed with MDS was I thought I had arthritis. Getting older I guess but best to check it out. The counts alarmed my primary care and off we started into the wonderful world of oncology.

Every time I would go in to see the oncologist, Id say "my hands really hurt and it is now in place X" or "it is still in my hands but it is now moving between X and Y".

We went through a good part of the alphabet of places before I was finally given something to help control it. The best way to describe the pain is like a really bad tooth ache combined with something trying to burst out of your joints. The movie "Aliens" comes to mind.

I stll get woken up from the pain and it takes forever for the meds to kick in but it is sort of easing somewhat. Discovered I need to shift the times when i take the pills so they last through the night. Last night was not a pleasant experience.. We found place H (the hips) and place K (the knees) along with the usual fingers (F?). Not good last night at all.

Dana Farber visit update

The visits I had today were to confirm diagnosis and determine choices/options.

The specialist states that my MDS will likely turn into acute leukemia within 2 years.

I can be given low level chemo drugs like Vidaxa to help keep my current counts relatively stable but it is a short term solution at best. Eventually the disease will overcome the benefits of the chemo then a match is a must. Also, the drugs dont work for everyone so who knows.

We are still determining whether to take the drug route. It will depend on how long it takes to find a match.

If a match is found soon, there isn't much of a need to do the Vidaxa.

Once a match is determined, I will be in the hospital for about 40 days between the chemo to kill all bone marrow, do the transplant, and recovery.

I go home after that but am effectively in isolation for a year because the immune system needs to rebuild.

Hopefully my work will allow me to work from home during this period.

Long day today.

Aplastic Anemia & MDS International Foundation News Letter

http://www.industrymailout.com/Industry/View.aspx?id=266043&q=302274370&qz=02a105

For anyone who wants it - a book on MDS

 Call Audrey Hassan at the MDS Foundation (800) MDS-0839. Ask her to send you the book "100 Questions & Answers About Myelodysplastic Syndromes" By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN.

Why CT scans and Oprah were never meant to be mixed.

Well that was special.

Chug down two bottles of a barium mix and wait.. for an hour.

I understand the reason for the wait but did they really have to force feed me Oprah babbling about and with soap stars?

Oprah. No means no!

Stomach is doing somersaults. Hope it is just the barium doing it.

What MDS is.. and is not.. a good FAQ

Finally.. A concise breakdown on MDS.

Lots out there from Google searches but this puts everything into a nice summary.

http://www.marrowforums.org/mds.html

New to MDS.. Knowing what questions to ask

One of the things I am most concerned about is in asking the right questions. The doctors are not exactly hiding things but they don't want to overwhelm with detail either. One of the message board members pointed me to the following list of questions to ask. Going to use this for sure!

A friend also mentioned keeping a notebook for any questions/answers you might have. I think this is a great idea.

CT scan today

I will be getting the CT scan today. This is to check for spleen enlargement and possible problems with the liver. There is a concern that there could be retention of iron which is a typical response from MDS. Hope, but don't expect, to hear something today. I most likely will get the results next week from either my current oncologist or the new one I am seeing at Dana Farber.

Found another forum for MDS

It can be found at http://forums.marrowforums.org

Sorry.. Fixed the link.

Benzine and jet fuel

I've been doing some web searches and there is no reported evidence that exposure to JP-4 can cause long term health problems.

I have had had direct skin exposure to the fuel and breathed it in as jet exhaust.

How there can possibly be no link?

The very same searches say that exposure to 100 parts per million can cause problems.

Will be investigating this further as part of the seminar on May 14th.

There is a specific talk for veterans.

Attending Living with Aplastic Anemia, MDS or PNH on May 14th

WHEN:
Saturday, May 14, 2011
8:30 am – 5:00 pm

NOTE: On-site check-in will begin at 7:30 am. Breakfast and lunch are complimentary for registrants.

WHERE:
Westin Waltham-Boston
70 Third Avenue
Waltham, MA 02451
(781) 290-5600

http://boston2011.aamds.org/Markslist/donorpro/displaySite.do?siteIdCode=4HPPZNW0

A community forum for patients and family living with MDS

Just joined a forum specific to patients and family of MDS.

Hopefully connecting with others experiencing this will give insight to treatment, medications, side-effects, etc.

Definitely don't want information overload but other patient and family experiences will be helpful.

For anyone who also wants to use the forum, it can be found at http://www.mds-foundation.org/forums/ubbthreads.php?ubb=cfrm

A moment of reflection - pluses to getting MDS

Should I get chemo, that will be a really easy way to drop the weight I have always meant to. 

No need to exercise. Boooyah!

I also get a free pass from changing the cat litter or cleaning up dog messes. I am truly sad about that one.

Being the match

Never heard or even thought about it before but I highly encourage all who can to get marrow typed through the  National Marrow Donor program . I've given blood and am listed as an organ donor but this is something else worth considering. A lot of people are waiting for a match that could save their lives and relatives are not always viable.

An additional lesson from this is that it is very hard for relatives over-seas to get typed into the US National Marrow Donor program. They can get typed and added to the national database for that country but it doesnt mesh with other country databases.

Perhaps the various databases should be merged so that more people could be helped. Just a thought.

CT scan scheduled. Finally

I was finally able to get an appointment for a CT scan on April 5th. Took a bit of doing to get it scheduled. For some reason, Harvard Pilgrim was refusing to authorize the test until one of their pet doctors talked to mine. Lets get with the program people.

Getting the news - or how a nurse should be fired

On April 30th, my wife and I went in for the results of my bone marrow test.

While waiting for the doctor, the nurse took vitals. This includes weight, blood pressure and other stuff. Interestingly the nurse mentions that they need to keep close track of the weight because I will be getting chemo. Niiiiice.. I am informed I have cancer by a careless comment.

My wife and I caught the comment immediately and looked at each other. Well I guess that settles that.

On the upside, we got to stew on that for about half an hour while we waited for the doctor to come in.

Can we say wired for sound at this point?