MDS-from diagnose to transplant in 9months.

[DanL]

Meri,

Congratulations on 2 years. I am sorry that I did not see this sooner. The questions I might have asked include progress of GVHD, current level of medications and whether they can be reduced, check on the status of vaccinations, especially in connection to the recent outbreaks of measles, etc. I would also ask if there is any benefit to potentially changing up drugs to something other than cyclosporine. The only reason I would ask that is that i have had gut GVHD since transplant (5 years now), and recently added MMF to my regimen, and suddenly everything is normal for the first time in years, which is an odd experience. i almost forgot what normal felt like.

Hopefully you got great answers during your last visit.

[Meri T.]

Thank you Dan and Neil,
My 2 years post transplant check is in 2 weeks. So still time to note things down for the visit.

Vaccinations. If I am still on cyclosporine - immuno suppression, then I think vaccinations are not administered. Will still ask the doctor about it.

Cyclosporine. I am taking 25mg every other day. Last year we halved the amount of cyclosporine, I had gut GVHD. I will ask about MMF. Googled it- sounds like a very powerful drug. Glad it worked for you Dan.

Will try to see what drugs can be reduced safely. Prednisolone!? I am taking 4mg/day. I will ask the doctor about Prednisolone.

My hospital is now BRAND new. Google "Toranomon hospital" (Entrance of the Tiger) right next to the Diet. They built it next to the old one, and hospital staff moved in a few weeks ago. Looking forward to seeing the hospital. Top 19th floor is for VIP patients with security gates. SCTs are on the 18th floor.Why am I talking about the hospital? I should be focussing on seeing the doctor and my gvhd. Shows how stressed I am.

[Meri T.]

Dan,
How is your auto immune attack?
Hope you found some drugs to clear the CNS.
Meri

[Meri T.]

I am meeting my donor in a few days. I know, I know, my donor is my brother, but I haven't seen him since he gave me his stem cells 2 years ago. He's flying over and we will have tons of stuff to talk about.

I have 5 brother and sisters. He was the only one that matched. It was a bit scary at first, to see if I could find them all. After the war, we were kind of dispersed, if that's the right word; Vietnam, US, NZ-Australia and Japan.

I am not of Japanese ethnic so the hospital mentioned using the Japan donor system wouldn't help much, so all hope was for a sibling HLA. The hospital gave me a saliva test kit, like the ones you see in the movies, I sent them the kit, they took their saliva and sent them back, and then the kit was sent to the laboratory for HLA testing. It's easier than drawing blood.

I videotaped my brother's stem cell being taken, 6 hours ! Before that he had injections for 3 days to increase his white cells. After the ordeal he suffered a numb head for a while. Never complained at all. We are close now, he asks about my health more than my other siblings. Maybe because my marrow and his are the same now.

Meri

[Rarity]

Meri,

Have a wonderful visit with your brother/donor! That is so wonderful that your brother matched!

My husband and his sister did the kit too. Unfortunately she wasn't a match so they went to the donor registry and thankfully a match was found. Hopefully he will have the chance to meet him!

[Meri T.]

Hello everyone.
Would like to update you on my 2 years post transplant. My doctor is tapering my medication very slowly, especially prednisolone.

Prednisolone withdrawal. From 4mg to 3mg. Just a lack of one mg, I had a bout of diarrhea, nausea, restless legs, headaches, itchy skin, which lasted around a week. The second week looks better. It will get better next week as my body is aquainted with the lack of prednisolone. Dan, I am still on cyclosporine, so no vaccinations yet.

My medication daily:
Prednisolone 2mg
Cyclosporine 3 times a week (25mg)
Itraconazole 200mg
Antibiotics 3 times a week
Vitamins
Fosamax for bones per week
Entecavir 0.5mg

My skin cGVHD is better compared with last year, seems it takes time to burn itself out.

My blood counts are great:
WBC 6.0
RBC 4.38
Platelets 210
Hgb 14.4

What I learnt at the checkup was that you have to absorb these as normality: wash hands, gargle, don't try buffets/old food, brush teeth, floss, use sun screen, cover yourself outside, stay away from sick people, use lotion every day for skin care, wear gloves and a mask while gardening, be careful of mold, etc. It has to become your normal way of life while on cyclosporine.

For my part, I don't eat out so much, no swimming, no hotsprings, no camping, ... maybe next summer .

Meri

[Meri T.]

Hello Rarity,
We had a fun week. My brother put on weight. Two years ago he was really fit, he said it was for the stem cells that he kept himself fit. Now he's enjoying life more with a few beers in the evening.

Talked about when he was in the hospital, the nurses asked him if he wanted bread or rice. He just said yes to everything they asked, because he didn't know one word of Japanese. So for 3 days they gave him bread for morning, lunch and dinner .
There was an interpretor but only for official work, like agreement to donate. I couldn't be at the meeting, his donation would have to be of his own free will, no sibling pressure.

We have the same blood type O+ very convenient.

I hope your husband and you can meet your donor. It's something beautiful there hard to describe.

Meri

[Rarity]

So glad you enjoyed your visit with your brother! I couldn't imagine not speaking the language with this disease. It is hard enough to comprehend speaking the same language! Kudos to your brother!

My husbands blood type changed to the donor!

I'm not the patient, but I understand on the spouses end the feeling of how selfless someone can be to save a life. Especially a total stranger. Truly amazing. No words or anything can describe just how grateful I (we) are! He continues to do very well! Hopefully they (we) will meet some day. It's in the works, but up to the donor.

May you continue forward and be well on your journey

Rarity

[Meri T.]

Hello everyone,

I have been so busy with trips to the good dentist. Twice a week! Last week I had two root canals, molar teeth. My front teeth have cavities !! I cannot believe it, I brush my teeth twice a day!

I think I have had more dental problems than in my whole life time before my SCT.

I am still on immunosuppressants and prednisolone, so maybe that's the culprit. I haven't talked to the hematologist, the transplant group, or the hospital's dentist to see what's wrong, I did what everyone does, I went on the internet:

http://www.bmrat.org/index.php/BMRAT/article/view/449

There's also a site on neutropenia and teeth, but my neuts are fine, so it's the GVHD and my sweet tooth wrecking this dental havoc.

Meri

[rar]

I am 5 years post transplant. In the first year after transplant I had about 10 cavities which is highly unusual for me. My dentist told me to brush and water floss 3 times a day. Water floss gets between the teeth where string or brush do not reach. Since then I have had no new cavities. Cavities induced by transplant are common.

I wish you luck,

Ray

[Meri T.]

Rar,
Waterfloss, great idea. Thank you very much.

Hope your own GVHD has come to a good place.

Meri

[Meri T.]

When one GVHD burns out, another takes its place!
The skin inside my right elbow has been thickening. It was the size of around a small coin, but now it's spread to about a handful. The left elbow is beginning to feel some thickening, too.

It doesn't hurt, I can still get blood samples from the vein, but when will it stop? I feel like I'm becoming an elephant or a hippo, if you know what I mean. I reported it to my hematologist at the 2 year check, he didn't say much.

Just wondering if anyone had thickened skin after a transplant, and does it disappear gradually, or will it cover the whole body?

Meri

[Meri T.]

This past week has seen my feet twitch and jump involuntarily, especially from late afternoon. My arms have started to catch the beat too.
I had a worse version after transplant, and the doctor gave me Rivotril 0.5mg, and my jerking legs subsided. Rivotril makes me drowsy, and I really don't want to take any more medicine if I can help it. Is this GVHD? Or drug related?
Meri

[Sally C]

Hi Meri,
This is going to be "for what it's worth". My husband has had RLS for years. He has not had a transplant but has had about 10 bone marrow biopsies. Although the experts say no, he swears they are the cause of his RLS. He says it seems be centered from the places where they biopsied. He takes Ropinirole and says the same thing you do - it makes him very sleepy - but he can't do without them.
I have followed your journey. You are a courageous soul and I wish you all the best.
Sally

[Meri T.]

Hello Sally,
Thank you very much, it is a relief to know that someone is also going through what I am.
Thursday, I asked my hematologist about RLS, and he honestly said he did not know the reason I have it.
Fortunately, the twitching has got better, meaning it comes and goes, so I am not complaining for more Rivatrol.

I hope your husband is doing well, too.
Please take care.
Meri

[Meri T.]

I thought I should add how my steroids are being tapered.

Prednisolone 3mg to 2mg.
Cyclosporine 3times a week to once a week
Stopped Itraconazole (for fungus)

In about a week, I will feel some withdrawal of the taper. Wish me luck.

Blood counts doing well:
WBC: 6.4
RBC: 3.90 (Hgb: 12.9)
Platelets: 190

I still have some slight GVHD skin and liver issues, but I feel like once I am in the GVHD zone, I have no fear of relapse .
Everyone, take care. Enjoy the summer.
Meri

[Meri T.]

Hello everyone,
You'd think after 2 years post transplant, with counts fine all the way, and chronic gvhd, too, that the blood counts would stay that way!? Oh no, the reds are dropping, since June, it's September and the counts have gone to the Low zone:

June 4.38 (hgb 14.4) - August 3.90 (hgb 12.9) - Sept 3.73 L (hgb 12.3)

I've decided to have more beef and greens, hope the new diet helps. The doctor said not to worry yet. Of course, I'm worried.

Any advice on bringing up the red cells/hemoglobin?
Meri

[Sally C]

Hi Meri,
Have they done iron studies? Recently my husband's reds dropped a bit and his hematologist ran the studies. His iron was low so she put him on an iron supplement. It brought the reds up right away.
All the best,
Sally

[Meri T.]

Thank you Sally.
I have an appointment next week, and will ask for the iron test.
Meri

[Meri T.]

My iron seems fine.
The reds are well, dropping, but not that bad:
June 4.38 (hgb 14.4) - August 3.90 (hgb 12.9) - Sept 3.73 L (hgb 12.3)- Oct 3.72 L (hgb 12.2)
Not so bad, right.

I guess my beef diet is helping the reds.
Meri

PS: Beef is SO expensive!

[DanL]

Might try checking b12 and folic acid as well. My counts fluctuate in and out of normal pretty regularly and I am 5 years post transplant. I have also had gvhd, which my doctor likes to blame for any variance.

Dan

[Meri T.]

Hello Dan,
I will have b12 and Folic acid checked at my next appointment. Thank you for the input.

I read the old forums and found that tapering cyclosporine/immunosuppressants decrease red counts, quote:

Originally Posted by Neil Cuadra

Is she taking the immunosuppressant cyclosporine? (...) It's a challenge for doctors to get the dosage just right, and to know how quickly or slowly to reduce the dosage over time. Sometimes tapering cyclosporine too quickly can cause blood counts to crash.

That happened to my wife. After trying to lower her dose and having bad counts, she had to have an increased dose, then try tapering again later. Figuring out the best does and the best schedule is as much an art as a science for doctors.

My cyclosporine was tapered in June, which coincided with the start of my Reds dropping. I think my body needs time to get used to the lack of cyclosporine. My next appointment is in 2 weeks time.

Meri

[Cheryl C]

Hi Meri - see this website for vegan/vegetarian sources of iron: https://www.vrg.org/nutrition/iron.php I imagine that these sources will be cheaper than beef in Japan. All the best!

[Meri T.]

Cheryl,
Thank you for the site, I did a week of the diet. I think it helped A LOT ! My reds/hemoglobin went back to normal:

June 4.38 (hgb 14.4) - August 3.90 (hgb 12.9) - Sept 3.73 L (hgb 12.3)- Oct 3.72 L (hgb 12.2)- December 4.04 (hgb 13) !!

Dan, b12 and Folic acid were fine too.

My prednisolone has been tapered/halved, 1mg daily. We will see how the tapering effects me in the coming weeks.

In the meantime my counts are good now, what a relief.
WBC: 7.4
Platelets: 193
RBC : 4.04

Meri

[Meri T.]

Hello everyone,

This June will be post transplant 3 years ! Today, my blood counts were good, WBC 5.9 RBC 3.94 Platelets 172
My liver counts are still high, and I have nausea some times, I itch a lot too. I have chronic GVHD skin, liver, stomach, and esophagus. So so hope my GVHD will burn out soon.

I will be moving to Houston this April, looking at insurance now. From an NIS point of view, the US insurance is really hard to navigate, what with premiums and advantages, I totally respect the US people on how you do it. I have stopped working ever since my transplant, I guess my meager savings will just melt off !

However, I am really excited to go. I got my green card 3 years ago, together with my leukemia diagnose, so I decided to do my STC here in Tokyo before heading off. A very good choice. With the NIS it was affordable.

Any any advice is welcome.

Meri