MDS-from diagnose to transplant in 9months.

[Meri T.]

Tomorrow I will have my port inserted in my neck, Monday will start off with the pretransplant drugs Fludarabine, Busulfan, and cytarabine.At present I am on Aciclovir, Daiphen.,Anti fungal, steroids, antibiotics and vitamins K, D.
6days chemo, rest one day, then transplant.
I am also taking meds for chronic hep B, since my brother donor has hep b antibodies.

I was diagnosed in August last year, MDS RAEB1from the first BMB, genetics fine, 5.6%blasts.The previous BMB showed 8.7%blasts, so the diagnose has not changed.

I won't be going through Vidaza or Dacogen, but straight to chemo and transplant. Has anyone had the same experience?

Wish me luck. Meri.

[Ruth Cuadra]

Dear Meri,

The transplant experience I had back in 1998 was very similar to what you will have. My original diagnosis was aplastic anemia (1996), but at the time of my transplant it was MDS/RA.

My pre-transplant regimen included 11 total body irradiation (TBI) treatments over 4 days followed by cytoxan for 2 days and 1 day of rest. My donor was an unrelated woman who was located through the National Marrow Donor Program (now called Be The Match).

Some mild GVHD plagued me for a while. I was off all medication after about 4 years. As I wrote in my profile for this site, my recovery was part work, part luck, and the result of the efforts of many people.

I wish you a successful journey through your transplant to a cure for your MDS.

Regards,
Ruth

[Meri T.]

Thank you Ruth, it's very heartening to hear from a long term MDS survivor. I can't believe it's transplant time. It seems only yesterday that I logged into this forum, and Neil and many others helped me with my BMB report. You guys are wonderful. I will try to post regularly to help others too.
I am in Toranomon hospital, top class in stem cell transplant, especially cord blood. The isolation ward is so crowded, that there are 4 patients in one room. and only 2 bathrooms for about 20patients.Yet they manage to keep everything clean, maintaining military strictness in cleanliness. No unnecessary luggage, nothing can be put on the floor except slippers, ...well, if and the patients, they are amazing, and most make it out quite well.

[GoodDay5150]

Hi Meri. I had a mini transplant 5.5 yrs ago for severe PNH. I was diagnosed in April of 2011 and received my transplant in December of 2011. I did have ever worsening symptoms for prob abt 10 yrs that I tried to ignore. I had Fludarabine for 5 days and 2 TBI treatments. My hospital visit was exactly 2 weeks, which is pretty short for an ordeal which is very hard on your body, even if you receive a reduced intensity regimen as I did. Like Ruth C, I also had an unrelated donor, mine was male, who is still anon. My GVHD was fairly mild compared to many other patients, and has been well managed by the great med staff at PSL in Denver Co. If you require extended IV care, your med team may recc a smart port. I had one for a year or so when getting photo. IV treatments for GVHD. A lot of meds and dr's appts later, and my transplant dr and myself agree that my treatment plan was the best choice for my condition. Good luck and keep a positive mental attitude.


Mario

[Meri T.]

Mario,
You only did two weeks in hospital! That's quite a record. The minimum stay here for sct is 2 to 6 months. Average sct patients usually do 4months, then let on trial leave for 2 days, then back in for a week, then officially released. And after that are weekly follow ups.
I dont know if its the new meds I am taking has caused restlessness at night, unable to sleep, or I am anxious about the upcoming chemo and transplant that has caused insomina.

I did ask the doctor why I am not undergoing chemo to bring my blasts down, they said it was ok at 8,7%, there's a girl here who relapsed, she is going through her 2nd cbt at 19% blasts. I hope the doctors know what they are doing.

And one more thing is they don't do second sct with the same donor, and no DLI? My doctorsaid if I relapse, then it's because my brother's stem cell doesn't work on me, he would opt for a cord blood transplant.
Any thoughts?

[GoodDay5150]

Hi Meri. With the reduced intensity conditioning that I had, I was not that sick before or after my transplant. I lost abt 10 lbs or so in that 2 week period. Just abt everything tasted strange, and you (I), really don't feel like eating regardless. At least that's how I was. I was more dizzy than anything, but that went away within a few days. As far as follow ups go, the clinic that I went to as well as other clinics in the US want you to stay close by for at least a few months after your transplant. Obviously you will have frequent check ups and med changes afterwards, 2-3 a week and sometimes more, but also in case of a bad infection, GVHD flare up, etc, so that a specialist can advise quickly.
I was sort of nervous/ scared abt the whole ordeal, but as I have stated on this blog before, I was so sick for so long, I was more than ready to be cured! I was not treated w/ any drugs before my transplant, w/ the exception of blood thinners and iron tablets, so it was all new to me. One dr was going to treat me w/ Soliris after I was diagnosed but then changed his mind. Maybe he thought that I could tough it out a few months more before my transplant, and Soliris can make you more succ. to meningitis and some other bad things. He had told me abt one of his few patients w/ PNH who was going to be a part of the clinical trial for the drug, but she had moved away and he did not know her outcome. I have actually met this woman at a PNH conference and she is indeed being treated w/ Soliris.
I was not advised what would be done in my situation if there was an issue w/ relapse, so I can't really speak to that. With that, in respect to transplants for PNH, w/ the technology being so good, your chances of a relapse are pretty slim. You are more likely to succumb to GVHD or an infection. The nurse coordinator at my transplant center sd that I had the absolute best match poss, and so far so good. I would very much like to meet my donor, but I have never heard back from him. Good luck and you seem to have a good attitude, so you should do well. Make sure you let us all know how you are doing.

Mario

[DanL]

Meri,

For MDS, it is unusual to do chemotherapy to reduce the blasts unless you have converted to AML There is some evidence that anything below about 13% blasts does alright with the normal pre-transplant conditioning, while maintaining a lower relapse rate. Many of the studies that I have read suggest that additional traditional chemotherapy prior to transplant may weaken patients too much and reduce the effectiveness of transplant. The exception being for treatment with vidaza or dacogen prior to transplant.

As for the DLI/second transplant if you relapse, I have not seen any information stating that one is better than the other, but there also has not been a lot of published work comparing the two that I am aware of. I think this may be due to the experience of that institution. The data that I have seen refers specifically to DLI and it being effective up to about 25% of the time.

As with most things related to MDS, the data that patients see is somewhat dated and may not reflect the latest medical practice, nor the experience of any given institution.

For example, I relapsed at 6 months and the treatment was six months of vidaza. The caveat is that my relapse was hardly detectable with no increased blasts and only a small cytogenetic anomaly. I have been treatment free for just over 2 years now. According to my Dr. it is what they do when they catch a relapse early and they have had pretty good success with it so far.

Wishing you the best throughout!
Dan

[Meri T.]

Thank you Mario and Dan,
I am at day-5, feeling nausea sometimes with dry heaves. Constipation too, so I was given some magnesium. I heard that in afew days I will experience diarrhea. So, I take every day step by step.
I am being loaded with all the pretransplant drugs, cytarabine, fludarabine, busulfan, anti-nausea, and other pills.
My attn span is now challenged , so I found watching something short like Britains got talent. or American Idol. or even Just for laughs, keeps my spirits up.
Meri

[Meri T.]

Feeling nauseous even with the anti-nausea meds. ,Docs found an unfection, and are treating it with anti-biotics.Starting to like crunchy sour food, and jelly of course. I am lactose intolerant, so I need to eat some more of those green leafy vegetables. Oh, I would kill for a steak!!

[Meri T.]

Hello everyone,
I had a bout of oral mucositis that lasted nearly 2 weeks due to the chemo. I used pain killers and the dentist suction tube.
Now at day 17, I still have some nausea, and high blood pressure, doctors say its the GVHD working up. They are still waiting for my skin to flare up, or diarrhea or any other signs of GVHD.
Besides that, my counts are climbing a bit everyday, yesterday was
WBC 2.2
RBC 2.71(no transfusion)
Plts 40(no transfusion)
Neuts 880
Meat, fish and shrimps taste like paper. I love hot cocoa, and fresh cantaloupe!
Keep strong everyone.
Meri

[Ruth Cuadra]

Hi, Meri.

Sorry to hear you've got mucositis. That was definitely one of the worst parts of the immediate post-transplant experience for me. I couldn't take anything -- medicine or food -- by mouth for several weeks. The idea that you can tolerate meat, fish, and shrimp much less cocoa and cantelope amazes me!! Good for you

Your counts seem pretty terrific for Day +17. I had my first trace of a white count on my Day +17 and my platelets hovered under 50 for months. The art and science of transplantation has certainly improved and you are proof.

Keep up the good work!

Regards,
Ruth Cuadra

[Meri T.]

Thank you Ruth, if not for your forum Iwould have freaked out last summer already!
Hard to believe, but Ihave read ALL the posts posted here! Imiss Greg.

So many medication, some meds to combat the side effects of other meds. My painkillers are being reduced, it has caused constipation. I haven't had a bowel movement in 2 weeks. I have been given a heavy dose of laxative, so far nothing. Maybe the nausea has to do with the constipation...?

At this stage, my doctors are interested in 1/should I feel any pain, itch, anything, to let them know at once- it would be GVHD.2/ Keep eating3/Keep up with the exercises in my rehabilitation program.

When I had mucositis, my meds were mostly put in the IV drip, but now since I can swallow again, the pills are back. They are trying to wean me off the drip.

I read a post somewhere, was it Sue and Dave? who didn't have a MUD, but could not d
a cbt. I think it depends on the facility. In my hospital, 80% of transplants are cord blood, even with only a 4/6match. The eldest so far is 70, he is doing fine. The only problem
is that the patient needs to lose weight. The Japanese are not as big as their western counterparts, so it works for them, but my friend in the same ward was 80kgs, he made it through the cbt, he is 60kgs now. So, I just wanted to say don't give up hope if you don't have a MUD.

With the National health system, my first month hospital fee, including my donor-brothers one week admittance, my transplant and follow-up, cost me the equivalent of only 3000us.Very affordable.
Stay strong everyone, take it per day. Cherish everyday.
Meri

[Sue&Dave]

Hi Meri - I'm very glad to hear that things are progressing along for you - despite the mucositis. Dave did have the option to have a cord blood transplant, and we were even moving in that direction last spring with two cords 'reserved' when he had a subdural hematoma that required 3 separate surgeries - the last one as a result of an infection that also resulted in them removing part of his skull and leaving it off. He had a 6 month recovery from that, a couple of good months and then his MDS kicked into high gear. He has been on Vidaza since February of this year and each month he seems to get a little better. Almost all of his counts are normal now (so unusual to not see the bold "LOW"s on his lab reports!), and he hasn't needed any transfusions. So, as we have been saying he is one of the 'lucky' ones that Vidaza seems to work on - and he tolerates each round a little better each time. We'll ride the Vidaza train as long as we can and only hope that he'll get several good years out of it (I've seen posters that said they have been on it for 7 years!) That said, we are cognizant that it could stop working at any time and continue to meet with his transplant team to have a plan in place if/when the Vidaza doesn't work anymore. We are looking at a haplo-identical transplant as the new center he goes to has a great track record with them. Best to you and please keep us posted on your progress, Sue.

[Meri T.]

Hi everyone,
I have been battling a low grade fever, and chills, that go away with meds but persistently comes back again, for over 4 days now. Drs are not worried, stating pre-existing germs and stuff from the past-me that are coming out, and perhaps some gvhd. My WBCs are responding accordingly by increasing to 10.1(!) to fight back.
Besides that, RBCs and Plts are still low 2.66/121.
Hgb 8.3

Sue,
I am very glad DAVE is responding well to vidaza, and that you have a good back-up plan. Take care of yourself, too. Remember that.

Enjoy the summer everyone, think of me some times.
Meri

[Cheryl C]

I've been reading your posts regularly too, Meri. It's good to hear that your white cells are responding as needed and the other numbers aren't too drastically low. You sound like a fighter with a healthy, positive attitude.

BTW I'm heading into winter down here at my son's place in Tasmania. Summer's a distant dream here now!

[Meri T.]

Thank you Cheryl, and keep warm AND DRY down there!

Day 27, still running a low grade fever, some constipation, belly pain, backache and nausea.
Seems like any kind of smell can trigger gagging, dry heaves, and my stomache to overturn. I've even changed my bathing soap, because I couldn't stand the smell of the old one. And don't get me started on meal times.

The nurses are great, from supplying me with those heated pillows for my back, to making sure I take my meds regularly.
The doctors on the other hand seem more interested in preventing infections, since I get anti-biotics, anti-fungals on the drip, and CT scans every few days.

Otherwise I am taking one day at a time, counts are:
WBC: 10.4 H
RBC: 2.98 L
hgb 9.4 L
htc 27.8 L
Plts 200
and some more for anyone interested in the differentiated counts,
Segs 64.5
Eos 2.0
Bas 0.5
Mono 9.0
Lym 18 L

I do "workouts" everyday for 20 minutes with the hospital trainer, mostly training my legs and feet muscles, and do the gym bike.

For food, I can tolerate soups, salads, and fruits. By tolerate, I mean I can eat it, it doesn't necessarily mean the food tastes good.
Hope my post helps those preparing for their own sct! You will get there, and maybe in even better shape than me!
Meri

[Meri T.]

Hello everyone,
Nausea, gvhd of the gut, right?still comes and goes, very persistent.

Counts are
WBC 6.5
RBC 2.99 L
Plts 263
hgb 9.2L
HTC 27.5 L
MCV, MCH, MCHC normal range.

So other than my reds, my brother's cells seems to be working.
My diet consists mainly of bread, cereal and fruits. I'm trying, but failing miserably, to incorporate some meat and fish.
A girl a few rooms away got a bad virus that entered her brain, and swept away a whole chunk of her memory. She has been here since March, but only remembers about two weeks of her hospitalization. We had some wonderful times in early June but she doesn't remember any of our conversations. Hope she gets better up there, I miss her.

The hospital staff talked to my husband and daughter about arranging a clean environment for me before I am released on a trial basis for 2days. Mold, dust, is the worst enemy it seems.

Take care everyone, and keep clean.
Meri

[Meri T.]

Day 30 came with stomach cramps and green watery stools. Actually, it started about a week before that with nausea, indigestion, and a belly ache. Then Wham! in the middle of the night it hit my intestines. After a stool test, doctors ruled out infection, and determined GVHD, put me on prednisone, my stools are still watery but back to the familiar brown colour. Seems it will take about 2-3 weeks to clear up, which is quite an optimistic outlook.

Blood counts for day 33
WBC 9.0 H
RBC 3.24 L
Plts 258
hgb 10.1 L

Besides that the gvhd and meds have taken a toll on my liver and kidneys, so that those numbrs are also all over the place. Doctors not worried though, saying I have it much easier than expected.

My diet consists mainly of bread and bananas, and the occasional hospital food.
Cherries, melon, oranges and other fruits are fine too. However, being lactose intolerant doesn't help raise my calcium levels.

Before GVHD came along, we were discussing switching to oral meds, and hospital release. However, it seems I will still be tethered to my best friend for a few more weeks.

Staying positive that this too shall pass.

Hoping everyone in the US enjoyed your 4th July.
Meri

[Cheryl C]

Hi Meri - Great to see those blood results and that you're doing OK considering the onslaught your body has been suffering. Are you allowed to eat really finely ground almonds? They are a good source of calcium.

[Meri T.]

Cheryl, yes, you could call it an onSlaught!

Yesterday, the skin rash appeared, and in under 24 hours had covered my whole body with tiny itchy red spots! I have steroid creams and lotions, and anti-histamines too.

My main problem is still my intestinals which start to hurt when food is passed down. I am on prednisone and cellcept.
Friday will do an endoscopy to see the extent of gvhd on my stomach.

Diarrhea, abdominal pains, nausea, itchy skin rashﾟ!!! when will this pass? 10days already.
Counts ok, though.

Anyone went through gvhd gut upper and lower intestinal pains? Please share your stories, I really need some encouragement now.
Meri

[rar]

A certain amount of GVHD is positive. It means that relapse is less likely to happen. I had all of what you are going through now+. I spent 2 months in the hospital. I went for 3 months without eating or drinking. I survived! It is now 3 years since transplant and the GVHD is not gone but is much better.

For the rash they kept increasing prednisone. It leveled off at 120 mg. a day. I have been on it for 3 years and it caused adrenal failure. Without the transplant I would be dead by now so I have no regrets. Any questions?

For my saga of my first 16 months post transplant search on "16 months past SCT" by rar

Ray

[Meri T.]

Thank you Ray, the prednisone and cellcept is not working for my gitract gvhd, so the drs are starting atg this wednesday.
Googled and found atg used for steroid refractory cases in gvhd.

My counts are fine. Drs say the downside of atg is it might weaken my donor.

Read that atg for AA is like shake and bake, so not looking forward to it.

Anyone out there also steroid refractory for gvhd that went through atg??

Meri

[Meri T.]

I thought I would continue my thread....
After the 3rd ATG, my GI TRACT GVHD subsided, it took a whole month. However, the opportunistic Urinary tract infection viruses BKV and JCV caused me a month of bloody urine and extreme pain. With drugs and a lot of liquids, I finally recovered after about 4weeks.

My numbers are doing well.

At present the doctors are focusing on some lingering GVHD symptoms, like nausea, diarhea,etc.
Meri

[Neil Cuadra]

I'm sorry to hear about your ongoing battle with GVHD.

Speaking of graft-versus-host disease, last month the FDA approved ibrutinib, trade name Imbruvica, the first drug for chronic GVHD.

[DanL]

Meri,

I have had gvhd of the gut basically since transplant. It gets better and worse, frequently within the same week.

I have tried rituxan, budesonide, prednisone, tacrolimus, and photopheresis. It seemed to take the best turn after the rituxan and has been reasonably well controlled with photopheresis and tac only pumping up the budesonide occasionally.

I hope that you get to a good place with the gvhd soon.

dan