MDS-from diagnose to transplant in 9months.

[Meri T.]

Thank you Neil, thank you DAN.

From talking to other patients down the hall, nausea is a part of their lives that comes and goes, and never really disappears.So be it.

Ihave been in the hospital since mid May, spent summer in isolation, and I hope this gvhd will come under control for me to go home in Autumn.I am still tethered to my iv drip, and painkillers,immunosuppressive drip. When these are changed to pills, then Imight be released.

The doctors are still wary of some viruses lurking, and are waiting for results of the tests- para influenza virus. My head CT scan came out fine, no traces of any disruption up there.


My right eye feels as if there is a grain of dust, the eye-doctor gave me steroid eyedrops, doesn't work. It doesn't itch, it's not painful, so I 'm not complaining. The doctor ruled out gvhd because it is ONLY IN ONE EYE!?

My numbers
wbc 6.9
rbbc 2.93
plts 131

I am taking prednidone 30mgs, allergy meds, hep b meds, vfend,meds for stomache lining,two kinds of antibiotics, meds for herpes zoster, and 4 other drugs...

[Meri T.]

Forgot to talk about prednisone in my previous post. I was taking 15mg, then tapered down to 10, which is 30% decrease. I felt exhausted, and nauseous... so prednisone was increased to 30mg.
The side effects of prednisone, as most of you have experience, varies. I have depression, crying and weeping, feeling lost! I can't sleep, I'm hungry all the time, but can't really digest so much My doctor says it''s normal. And he is optomistic that prednisone will do the job, so I will not need another dose of ATG rabbit.

Ever since my stem cell transplant on June 2nd 2017, I haven't had a bmb yet. Strange? The doctor said we will do it soon.

For those whose loved ones are in their 70s, my room-mate is a 72year old lady, cord blood transplant, doing fine, no GVHD, only some nausea during the pretransplant regimen.
Her provincial hospital rejected her, stating they cut the age limit at 65 for transplants, so she came all the way here, where there is no age limit. She is such a success story.

I turned 52 last week. Praying that I still have MANY MORE YEARS to enjoy with my family.

[Meri T.]

Forgot to talk about prednisone in my previous post. I was taking 15mg, then tapered down to 10, which is 30% decrease. I felt exhausted, and nauseous... so prednisone was increased to 30mg.
The side effects of prednisone, as most of you have experience, varies. I have depression, crying and weeping, feeling lost! I can't sleep, I'm hungry all the time, but can't really digest so much My doctor says it''s normal. And he is optomistic that prednisone will do the job, so I will not need another dose of ATG rabbit.

Ever since my stem cell transplant on June 2nd 2017, I haven't had a bmb yet. Strange? The doctor said we will do it soon.

For those whose loved ones are in their 70s, my room-mate is a 72year old lady, cord blood transplant, doing fine, no GVHD, only some nausea during the pretransplant regimen.
Her provincial hospital rejected her, stating they cut the age limit at 65 for transplants, so she came all the way here, where there is no age limit. She is such a success story.

I turned 52 last week. Praying that I still have MANY MORE YEARS to enjoy with my family.

[rar]

"My right eye feels as if there is a grain of dust, the eye-doctor gave me steroid eyedrops, doesn't work. It doesn't itch, it's not painful, so I 'm not complaining. The doctor ruled out gvhd because it is ONLY IN ONE EYE!?"

I get the feeling of something in my eye. What I find that works is the 5% salt solution in the eye. It is usually in just one eye. Eye doctor said steroid eye drops work in about 50% of the patients and can take up to 6 months to be effective. I tried them for a year with no positive results. Eye doc doesn't know GVH, oncologist doesn't know eyes. Eye problem is being treated as dry eye.

[Meri T.]

Dan's reply about the oncologists and eye doctors gave me a boost, good laugh that I really needed this morning.

I will look into that salt solution.

Last night, I was a bit stubborn, as I thought I could sleep without a sleeping pill, but alas, only could catch a few hours, and woke to a migraine. Lesson learnt.

Today the painkiller drip will be stopped. It helped while I was fighting my urinary tract infection. Since painkillers normally cause constipation, then maybe without them, I might get diarhea, will update.

4 months Isolation is taking its toll. Very grateful for all the transplantees who have gone before me, and shared their stories. Keeps my spirits up.
To tell the truth, I was feeling sick of feeling unwell. But always feel better when my husband drops in to see me. Besides doctors and nurses, the presence of loved ones, even for just half an hour is a great mental boost.
Meri

[Meri T.]

FISH came out with 98.2% donor

so that's 1.8% blasts

Hoping that it could be 100% donor, but I am thrilled at 98.2% already, since I had to have 3 rounds of atg that Doctors say would weaken my donor.

So grateful for my brother's stem cell. I'm an XY female now.

There is a part I don't understand in the fish report.
There is XY my donor at 98.2%, then XY mine at 1.4%, then X only at 0.4%.
What is this separate X? Someone enlighten me, please.

Meri

[Meri T.]

Blood tests came out positive for cytomegalovirus, so I am on anti-virals for 8days.
The pharmacist says the drugs will lower my blood counts a bit.The virus was caught early, very fortunate, so it didn't have time to wreck havoc on my already frsil intestines or attack my lungs.

Doctors say it was the atg that weakened the Donor, that gave latent cmv a hand in the upsurge. He has reduced my cyclosporine to 75mg/day, prednosine to 20mg/day, as well as other drugs.

My counts
wbc 5.2
rbc 3.05
plts 96

I am not tethered to my drip anymore, I can eat normal food (if the hospital food can be passed as normal!) if all goes well- no fevers, No new viruses, no new gvhd surprises, then I will be released this Saturday.

Wish me luck.Some prayers would be nice too.
Meri
Wish me luck.
MERI

[Rarity]

Hi MerriT,

I've been following your posts. I am sorry you have to go through this. Sending you luck & prayers!! You're a fighter!

All the best,
Rarity

[Hopeful]

Hi Meri T,

You've come a long way. It is good that they caught the CMV early.
We are rooting for you! Stay strong!

[lisa3112]

Good on you meri! You are so positive after a whole lot of pain. Just wanted to say I also have one eye that plays up every couple of weeks. I'm supposed to use "dry eye" drops also. Its never infected just bright red with slight discharge. Good luck, your numbers are great. Cmv was also an issue for me. But hasnt been active for over a year now.

[Meri T.]

Thank you Rarity, Hopeful and Lisa, guess the Lord did hear those prayers, and Saturday saw me released from 5 months of isolation.

My hematologist says my MDS (RAEB1) is in remission. I came home with strict directions to take my meds as prescribed, call the hospital if I run a temperature over 38oC, can't keep food down, get diarrhea, have difficulty breathing, or any other worries. They say it's best to catch every little symptom early, because so many get pneumonia or infections when they go back home.

I am to avoid dust, mold, crowds...
How can I? It's Tokyo!
So I keep my windows closed on this wonderful autumn day, and just take a very short walk around a nearby park for exercise.

I have weekly blood tests, so that the doctors can taper the cyclosporin and steroids etc. My platelets have been falling since I took those meds for CMV. WBC and RBCs are okayish.

The outer part of my tongue has a white layer, but the inner part of my tongue has this dark greenish layer, and makes everything tastes sour. I remember reading a post somewhere about Baille(?) who had a major tongue cleaning and scraping. I just use my toothbrush, doesn't work. Any ideas everyone?

Meri (typing from HOME!)

[Callie]

Congratulations on your freedom!!! Yes, it was Dad (Bailie) who noticed a remarkable change in taste after he really brushed his tongue (he just used his toothbrush). Maybe a battery operated (not too powerful) one might help?

Good luck and please be careful. Dad always thought (but never knew for sure, of course) mowing the lawn without a mask (he swore he felt/smelled the "poof" of old/dead grass and mold) is what led to his lung infection and therefore first relapse.

Wishing you the best on the outside!

[rar]

Nystatin works on thrush.

[Naive]

I found a simple mouth wash of sodium bicarbonate in water helped my mouth when I had an NG tube after abdominal surgery.

Carol

[DanL]

Brushing several times per day with an emphasis on scraping with the brush worked pretty well, along with clotrimazole or nystatin. Keeping the tongue clean was key for me to restore taste, but it took a long time. At about 2.5 years I could tolerate spicy foods again.

[lisa3112]

Congrats, great to hear you were discharged 😊 yeah the valgancyclovir for cmv dropped my counts too. But cmv is worse! As soon as I stopped the meds, the counts improved. Keep up the good work.

[Cheryl C]

Well done, Meri. It must be wonderful to be able to go outside again and to be in your own place.

[Meri T.]

Thank you Callie, Rar and Dan, I did the all the above and my green tongue has lightened up to an acceptable yellowish colour. Taste is still off though. Will have to be patient on that one.

Just wanted to update you all on the meds I am taking at the moment nearly 5 months post transplant for MDS RAEB1, donor was my brother. He had HepB antibodies, which I inherited.

Prednisone 5.5mg
cyclosporin 75mg
aciclovir 200mg
eldecalcitol (vit D) bone-density dropped nearly 10 points in 3 months.
Sulfamethoxazole
CIP 200
Entecavir (for HepB)
Rebamipide
Rabeprazole
Voriconazole
Brotizoram (sleeping pills)

Most of the meds I am taking are generic, I chose so because, well, it's cheaper and if the product constituents/ingredients are the same, I wouldn’t mind.
However, some of my friends have advised me against going generic, saying the preserves used in generics might become another burden, eg. allergies etc.

This should be put in the DRUGS forum section, sorry. But anyone taking generics instead of the real thing? I did talk to the Pharmacist, he said, it's my choice, but if it were him, he would stick to the prescription. Maybe I should talk to the doctor. Any ideas?
Meri

[DanL]

I would talk to your doctor. I know that there were certain drugs that my doctor specifically ordered the brand name, and others that he was fine with the generic. Prograf is the one that immediately came to mind.

[Meri T.]

Updating everyone on the forum, I hope you all are enjoying this wonderful weather.
I met with my hematologist on Thursday.
My numbers post 5 months SCT are:

WBC 5.9
RBC 3.41 L (Hgb 10.7 L)
Platelets 114 L

I was diagnosed last year in August, and took the watch and wait approach, I never did Vidaza or Dacogen, the doctor just said your MDS is not acute, so we will wait and then do the transplant when the timing is right. So I waited. My blasts went from 5.6% to 8.7% in 9 months, in the 7,8 months after diagnosed, my WBC was low, the RBCs low too, my platelets were the problem, really dropping, and I had to have platelet transfusions every 10 days. That was when the doctors decided it was "time" for the transplant: I was admitted in May for chemo, and stem cell transplant on June 1st 2017.

So here I am 5months post transplant, and it feels really good to be "cured" of MDS. Yes, the term relapse is always at the back of my mind, so I take
every single day with humble gratitude.

Dan, my doctor said generic would be fine. I don't take prograf, I take neoral (cyclosporine) and Vfend, etc.

At present I take 9 kinds of meds. I see my hematologist for my blood check twice a month, that might become once a month if the cells behave themselves. I have taken a year off from work, so I mostly stay home, cook, take walks, ride my bike around my area, pray a lot, and trying to well, be a better person.

My teenage daughter is very cooperative. She wears a mask at school, and when she comes home she washes her hands and gargles. I can't stress enough the dangers of germs and viruses brought back home to immune-suppressed patients.

Stay healthy everyone. Enjoy the golden leaves.
Meri

[Meri T.]

Hello everyone,
Blood count not so bad this time
WBC 4.9
RBC 3.55 L (HGB 11.3)
Platelets 100L

Unfortunately my liver enzymes have skyrocketed
AST (GOT) 13-33 : 331
ALT (GPT) 6-27 : 363
LD 119-229 :443
ALP 117-350 : 1387 !!!!!

My doctor stated GVHD liver, and has increased prednisone from 7.5mg/day to 20mg. Next week I have an appointment and an ultrasound; we will see if the steroids are working, and how far gone my liver is.
My eyes are still fine, no jaundice yet. Main symptoms are nausea, bloated belly and a slight fever 37.9oC which came down instantly after acetoaminophen. However the doctor still had me test for the flu virus, just in case. It IS the flu season.

I checked the transplant manual, and mine is such a textbook case. There is nothing I haven't been through! And more to come.

However, I am 6 months post transplant, so with GVHD at this period, does that mean CHRONIC GVHD !!!??? I will ask the doctor next week. I also have an appointment with the follow-up team next week.

I noticed that many on this forum had GVHD of the skin and gut, but not the liver. Would appreciate any comments and advice, especially for a healthy liver diet.

Thank you for reading. Keep warm everyone. (For all of you downunder, keep cool!)
Meri

[Cheryl C]

Hi Meri

Great to see some of your numbers rising. I hope the liver issues can be sorted quickly for you. I might be on the wrong path, but just in case it's helpful, you could have a look at Dr Sandra Cabot's website - https://www.cabothealth.com.au/ She has a lot of experience with liver health and has written books like the Liver Cleansing Diet. Not sure if that's what you might need, though. Perhaps you could try contacting her and asking for advice.

[Meri T.]

Thank you Cheryl.
Actually my sister flew up from Adelaide last week and stayed with me for a few days. We had fun, lifted my spirits a lot. I got a lot of Merino wool inner wear and Cadbury chocolates. I know, chocolates and liver health really don't go well together. I made pho and spring rolls etc. I think I ate too much last week.

I have raised bumps on my scalp. They itch. Googled, and found it was part of GVHD skin. I showed the bumps to my hematologist who was not dismissive, but he seemed more worried about my liver. I guess those bumps won't kill me in the next following weeks, but my liver if not under control, might.

I have switched to fresh fruits and non fried foods, and will keep it up until next week's blood test. I am trying to do my part, not just let the meds do all the work.
Would not want to spend Christmas in the hospital, though my husband insists it's the safest place for me.

Meri

[DanL]

My doctor had me on ursodiol for almost 3 years to try and help out the liver with dealing with toxins. It is an old-school anti-cholesterol drug that might be worth looking into, especially since you are increasing steroid doses, which can also negatively impact liver function, but may be a lesser or 2 evils with the GVHD. I did not experience any side effects with it, and my liver numbers never moved out of the normal range.

[lisa3112]

Hey! Sorry to hear your liver is playing up. I also was on the drug mentioned above.
As for bumps on head, I had those too, and dandruff! So annoying. I actually could only use conditioner for over a year. Moogoo is an australian brand which is really gentle. Also is it on your face or just scalp? I also got follicultis, which was like little pimples (they did a biopsy to confirm it was follicultits and not GVHD).