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.