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.