MDS-from diagnose to transplant in 9months.

[Pearl]

Originally Posted by 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

As you probably know there is good news - Houston is home to the MD Anderson Cancer Center. Thee are many places to start and this seems one of the best ones. https://www.mdanderson.org/cancer-ty...-syndrome.html

[Meri T.]

Hello Pearl,
Thank you for the link. MDAnderson is SO BIG! Gosh, I'm a bit intimidated already.
Meri

[Pearl]

Originally Posted by Meri T.

Hello Pearl,
Thank you for the link. MDAnderson is SO BIG! Gosh, I'm a bit intimidated already.
Meri

Give them a call and see what happens.
International +001-713-745-0450

[Meri T.]

Thank you Pearl, you're a life saver!

With the corona running around, I think I will self quarantine for 14 days when I reach Houston.
The corona has reached and spread in Tokyo a bit too much, schools are closed (my teenager is whiling away on youtube), employees remote working (my husband is at home on his laptop) and masks are totally sold out.
People are now doing what we have been doing these past years, washing hands, wearing masks, avoiding sick people. So it's so natural for me now.

How is everyone during this time? I hope you keep safe on trips to the hospital.
By the way, my hayfever has really gone. Really gone. I read somewhere of a person who recovered from HIV because he had a transplant for leukemia ! Isn't that cool.
Anyway, where is everyone? Please drop in and let us know how you are dealing with this virus.
Lots of prayers for everyone in the forum.
Meri

[bobspez]

Hi Meri T,
It's been over two years since I posted on your thread here. I'm sorry your chronic gvhd issues have persisted but I'm hopeful that new ways of fighting chronic gvhd are being developed. I hope your gvhd does improve over time.
I wonder if you have relocated to Houston by now?
The covid 19 has been a strange experience. We are in NJ, the second highest state with Covid cases, after NY. I'm 43 months on watch and wait with CMML and have been fairly stable so definitely will stay indoors for as long as it takes. I read that with a compromised immune system due to blood disorders we are probably 5 to 7 times as vulnerable to the virus as the general population. We have been ordering our groceries from a local store that delivers, and also shipment of non perishable items from Amazon, Target, Walmart and BJ's. My wife dons gloves and uses clorox wipes to wipe down all the items, then washes her hands with the gloves on, and washes them again with gloves off, and uses clorox wipes to wipe off all the doorknobs. It's a bizarre ritual, but we are trying to be as safe as possible.
We participated in a virtual birthday party last night for my cousin, with 10 others plus my cousin and her husband, using Zoom, a sort of SKYPE for multiple users. The party lasted an hour and a half. It occurred to me that maybe this is how people will communicate if we populate the moon or Mars.
I have enjoyed catching up on all your posts. Wishing you the best going forward from here. Good luck.

Originally Posted by Meri T.

Thank you Pearl, you're a life saver!

With the corona running around, I think I will self quarantine for 14 days when I reach Houston.
The corona has reached and spread in Tokyo a bit too much, schools are closed (my teenager is whiling away on youtube), employees remote working (my husband is at home on his laptop) and masks are totally sold out.
People are now doing what we have been doing these past years, washing hands, wearing masks, avoiding sick people. So it's so natural for me now.

How is everyone during this time? I hope you keep safe on trips to the hospital.
By the way, my hayfever has really gone. Really gone. I read somewhere of a person who recovered from HIV because he had a transplant for leukemia ! Isn't that cool.
Anyway, where is everyone? Please drop in and let us know how you are dealing with this virus.
Lots of prayers for everyone in the forum.
Meri

[John T]

Hi Meri T, Dallas here and welcome to Texas,

I have been following your posts since my MDS diagnoses. I am now 22 months post transplant.

Let us know how you are doing and how your move went.

[Meri T.]

Hello everyone,
The flight Tokyo-Houston was great, 20 passengers in a 400 seat plane !
Houston is wonderful, the space, the food, the beef! I am very sure my Hgb is good, with all the beef I have been enjoying.The summer is great, sunny with showers. My skin gvhd has subsided, I used a cream from Walmart, it does wonders.

The corona numbers are a bit alarming though, 5489 cases yesterday in Texas. I flew into the US through the Seattle hub, there was no temperature testing, no distancing at the immigration line!? Tokyo Narita/Haneda airports have obligatory CoV testing for arrivals. They have only under 40 cases/day, but they are still concerned, not as open as over here.
After I arrived in Houston, I did the 14 day self quarantine, and even did the drive in CoV test near my place. I don't take prednisone anymore, so I don't know if that makes me immune compromised or not. I haven't taken any vaccines yet, so maybe I am still compromised.

Bob, thank you for letting us know how your family work with this corona life. it's amazing how you take precautions. Good for both of you.

Pearl, all the hospitals are more on coV patients, so I haven't gotten any appointments yet. My case is not severe enough for an appointment. I only take 2 pills a day, acyclovir for any herpes flareup, and entecovir for prevention of Hep b.

John T. my neighbour in Dallas ! Thank you for the welcome. I hope your posttransplant was less severe than mine. Some people do have just a bit of gvhd, then they move on very well. I have got 3 pairs of sunglasses, the sunshine in Houston is so bright, it hurts my eyes. I do eyedrops at night too.

All in all I am doing very well with my cgvhd. June 2nd was my 3 year post transplant. I congratulated myself with a thick slice of beef, and a box of fresh mangoes !
Meri

[John T]

Originally Posted by Meri T.

Hello everyone,
The flight Tokyo-Houston was great, 20 passengers in a 400 seat plane !
Houston is wonderful, the space, the food, the beef! I am very sure my Hgb is good, with all the beef I have been enjoying.The summer is great, sunny with showers. My skin gvhd has subsided, I used a cream from Walmart, it does wonders.

The corona numbers are a bit alarming though, 5489 cases yesterday in Texas. I flew into the US through the Seattle hub, there was no temperature testing, no distancing at the immigration line!? Tokyo Narita/Haneda airports have obligatory CoV testing for arrivals. They have only under 40 cases/day, but they are still concerned, not as open as over here.
After I arrived in Houston, I did the 14 day self quarantine, and even did the drive in CoV test near my place. I don't take prednisone anymore, so I don't know if that makes me immune compromised or not. I haven't taken any vaccines yet, so maybe I am still compromised.

Bob, thank you for letting us know how your family work with this corona life. it's amazing how you take precautions. Good for both of you.

Pearl, all the hospitals are more on coV patients, so I haven't gotten any appointments yet. My case is not severe enough for an appointment. I only take 2 pills a day, acyclovir for any herpes flareup, and entecovir for prevention of Hep b.

John T. my neighbour in Dallas ! Thank you for the welcome. I hope your posttransplant was less severe than mine. Some people do have just a bit of gvhd, then they move on very well. I have got 3 pairs of sunglasses, the sunshine in Houston is so bright, it hurts my eyes. I do eyedrops at night too.

All in all I am doing very well with my cgvhd. June 2nd was my 3 year post transplant. I congratulated myself with a thick slice of beef, and a box of fresh mangoes !
Meri

Hi Meri T.,

I have family I visit in North Houston maybe we can get tother for a beer and a burger sometime. I can highly recommend Goodsons in Tomball.

Even though my transplant was a high resolution matched MUD donor I still have cGVHD. Last year put me in the hospital with kidney failure from which I seem to have completely recovered. Kidney numbers are all normal, still have some elevate liver enzymes and lower than normal rbc and hemoglobin.

All my vaccines except MMR have been completed. My transplant center was Medical City Dallas which was classified by insurance company as a center of excellence along with MD Anderson.

[John T]

Hi Meri,

Haven't heard from you in a while.

Staying clear of Covid I hope.

[Meri T.]

Hello John,
I freaked out. CoV cases in Houston was giving me stress, maybe that's why my gut went awry, diarrhea so bad I lost weight, and felt faint.
I called a doctor that was recommended, check up was 1850$, blood test 500-5000$ depends on what she wanted to check. Appointment the next week.
I saw the cost, and the timeline, and found I couldn't survive for the appointment, so that night I booked a flight and flew back the next morning for Tokyo, met my hematologist the next afternoon and got my blood counts. In Tokyo it was 80$, doctor, blood test and meds.

It was scary. Let's see, when I came to Houston I was fine, but as my gut gvhd worsened my red cells and platelets had gone down, calcium levels low, and lots of stuff were bad. That's how fast gut gvhd works.

I am fine now, lost a lot of weight. My husband is worried, he insists I stay in Tokyo awhile before flying off. Especially since coV rates have worsened in Texas.

How about you? How is Dallas?
Meri Tokuhara

[John T]

Originally Posted by Meri T.

Hello John,
I freaked out. CoV cases in Houston was giving me stress, maybe that's why my gut went awry, diarrhea so bad I lost weight, and felt faint.
I called a doctor that was recommended, check up was 1850$, blood test 500-5000$ depends on what she wanted to check. Appointment the next week.
I saw the cost, and the timeline, and found I couldn't survive for the appointment, so that night I booked a flight and flew back the next morning for Tokyo, met my hematologist the next afternoon and got my blood counts. In Tokyo it was 80$, doctor, blood test and meds.

It was scary. Let's see, when I came to Houston I was fine, but as my gut gvhd worsened my red cells and platelets had gone down, calcium levels low, and lots of stuff were bad. That's how fast gut gvhd works.

I am fine now, lost a lot of weight. My husband is worried, he insists I stay in Tokyo awhile before flying off. Especially since coV rates have worsened in Texas.

How about you? How is Dallas?
Meri Tokuhara

I am truly sorry to hear about your bad experience with both personal health and American health health care.

Even with my top shelf employer sponsored insurance plan I still have a $6000 annual deductible. Right now I am only able to work part time and paying Cobra premiums of $700 per month.

Dallas CoV rates are not as bad as Houston but its a relative relation of worse vs not so worse.

Good to hear you are better now and your husband is giving you good advice. Tokyo is a safer place to be right now with CoV than Houston.

I had asked my Oncologist/Hematologist about how many of his BMT patients had contracted CoV. He said don't quote him on this because the data is antedotal but of the 9 patients all had survived and were doing ok. We also discussed how CoV is similar to GVHD and the new treatments involve immune suppression as CoV attacks your organs. I have an appointment on Monday and will ask about any outcomes for Remdesivir for BMT patients.

[Meri T.]

Hello John
Thank you for the info, and what did the doctor say about Remdesivir?

I will be flying to San Francisco today for some procedures to complete, my signature is needed. There's an overnight stay at Seattle on my flight back. I don't think I can sleep at the airport, maybe a nearby airport hotel. Anyone in Seattle with a recommendation?
I read that California's cases have risen. Just hope there's no lockdown.

I have put all my meds on my carry-on luggage, with a prescription. A lot of masks to change, and hand sanitizers.

I googled Goodsons Tomball. The food looks good, will be for next year or the year after. Something to look forward to.
Take care everyone.
Meri

[John T]

Originally Posted by Meri T.

Hello Peter,
Thank you for the info, and what did the doctor say about Remdesivir?

I will be flying to San Francisco today for some procedures to complete, my signature is needed. There's an overnight stay at Seattle on my flight back. I don't think I can sleep at the airport, maybe a nearby airport hotel. Anyone in Seattle with a recommendation?
I read that California's cases have risen. Just hope there's no lockdown.

I have put all my meds on my carry-on luggage, with a prescription. A lot of masks to change, and hand sanitizers.

I googled Goodsons Tomball. The food looks good, will be for next year or the year after. Something to look forward to.
Take care everyone.
Meri

I asked the doc about Remdesivir and they said they did not have any patients who have used it.

My latest blood tests are looking good with exception of some elevated liver enzymes they are attributing to GVHD. All other liver functions are normal, rbc and hgb still need improvement. I am taking 2 500mg celcept per day and they cut back to 1 500mg. Cellcept can suppress counts.

I started the process of contacting my donor since its been 24 months as of next week.

Good luck with your travels and you know all the precautions.

Look forward to hearing from you.

John

[John T]

https://www.nwahomepage.com/wp-conte...FINAL-JPEG.jpg

[Meri T.]

Hello everyone.
Wishing you all a blessed new year! Thank you John for the Covid link.
I haven't had any shots since I had my transplant 3.5 years ago, so I will need ALL those shots polio, DPT...all of them, including the covid shots.

I will ask my doctor this week whether he recommends me having the covid shots (when it's available).
Has anyone had the Covid shots yet? Any side effects? Please let us know, thank you.
And again, a wonderful new year to all, even in sickness, it's nice to have a place to ask, listen, learn or even vent.
Meri

[John T]

Originally Posted by Meri T.

Hello everyone.
Wishing you all a blessed new year! Thank you John for the Covid link.
I haven't had any shots since I had my transplant 3.5 years ago, so I will need ALL those shots polio, DPT...all of them, including the covid shots.

I will ask my doctor this week whether he recommends me having the covid shots (when it's available).
Has anyone had the Covid shots yet? Any side effects? Please let us know, thank you.
And again, a wonderful new year to all, even in sickness, it's nice to have a place to ask, listen, learn or even vent.
Meri

Good to hear from you Meri.

I just got back from my Dr appointment and my labs are looking good.

I started Jakafi about 3 months ago and the GVHD is much better.

[quantpsyc]

Hey John,
My husband Ed tried Jakafi for his gvhd after the spine specialist said he had to get off the prednisone, three compression fractures in vertebrae!! He is prednisone dependent, every time he gets below 15mg his gvhd flares.
He has been struggling with low platelets for about a year so has been on promacta....had finally gotten over 50k platelets when they put him on the Jakafi, his platelets tanked and bleeding started. They tried lowering the dose with no improvement then took him off. He won't go back on. He is going to try ECP if medicare will approve it.

His doctor at Duke wont let him get the vaccine until they see "lots more data". Not so concerned about transplant status but am concerned about the gvhd...seems anything new or different makes it flare. So we will keep hunkering down a while longer. Sure am looking forward to the end of this pandemic!!
All stay safe, stay sanitary and stay well!!
Kathleen

[John T]

Originally Posted by quantpsyc

Hey John,
My husband Ed tried Jakafi for his gvhd after the spine specialist said he had to get off the prednisone, three compression fractures in vertebrae!! He is prednisone dependent, every time he gets below 15mg his gvhd flares.
He has been struggling with low platelets for about a year so has been on promacta....had finally gotten over 50k platelets when they put him on the Jakafi, his platelets tanked and bleeding started. They tried lowering the dose with no improvement then took him off. He won't go back on. He is going to try ECP if medicare will approve it.

His doctor at Duke wont let him get the vaccine until they see "lots more data". Not so concerned about transplant status but am concerned about the gvhd...seems anything new or different makes it flare. So we will keep hunkering down a while longer. Sure am looking forward to the end of this pandemic!!
All stay safe, stay sanitary and stay well!!
Kathleen

Hopefully the ECP will work for him.
My Oncology team is taking the same approach with the Covid vaccine. I told them to sign me up as in my opinion the vaccine could not be as risky
as contracting the disease.

Has Ed been tested for engraftment percentage? I had low platelet counts early after transplant. My engraftment at that time was 90%. Since after lowering my immunosuppressive drugs it has gone to 100% and the GVHD flared in kidneys, lungs, pancreas, an eyes. Thats how I ended up on Jakafi which so far has worked well for me.

Platelet counts are 312. RBC 3.63 and HGB 12.6 are still a little low.

[Meri T.]

Kathleen,
I hope medicare will approve ECP for your husband. I haven't tried it, but I do know tapering prednisolone is a very VERY slow process, especially when you get under 10 mgs, and of course gvhd will flare. Even now I've been off it for a year, gvhd still comes in various ways.
And as you say, anything can make it flare, I used a different soap and my skin started itching! I ate beef and my gums started hurting!?
What I do is I try to live a very regular life, no surprises to upset my fragile gvhd. Hope your husband stays well during this time.


John,
Your counts are quite good! Seems like Jakafi is working for you!
My platelets and red cells have always been a bit low. I haven't had a blood check in a while, my next appointment is April.
Let us know when you get the vaccine, and side effects if any.

Meri

[quantpsyc]

John your numbers look great., no worries on your end for platelets. And Jakafi seems to agree with you!! I think Ed's issue was that with already low platelets, the expected bump down on the Jakafa was critical for him.
He has been at 100% donor for over a year (bmt May 2019) His platelets recovered to normal levels before dropping precipitously. Maybe ITP, maybe GVHD. Maybe some of the cocktail of meds he is on. They admit they just don't know but the Dx on record is ITP.
Ironically he now has been diagnosed with a blood clot in the leg. They say his body is overcome pensating to the low platelets by trying to clot faster. BC of the low platelets they can't put him on blood thinners, so this afternoon he gets an IVC filter put in to avoid movement of the clot to the lungs.

[quantpsyc]

Thanks Meri, yes I learned very early not to make any changes! A couple weeks post transplant I used a different detergent because my old one was unavailable. Ed got gvhd in a pattern (collar, cuffs, underarms, belt...anyplace fabric would be tighter) that made it clear to me was detergent. The nurses kind of shrugged off my suggestion about the detergent but nonetheless I now always use one "clesn" detergent (no scent, no dye, no additives) and no fabric softener.
That's why I am concerned about the vaccine. Anything new and different seems to set him off!! We also try to make life as boring and predictable as possible!
Well he has surgery in a couple hours for that blood clot. Prayers please!!

[Meri T.]

Kathleen,
Ed is in my prayers, and rest assured you are too!

I so hope the surgery will go smoothly, and the blood clot will remain just an incident only. I see your doctors are quite well versed with Ed and taking good care of him.

I have talked to my doctor, he hasn't received his covid shot yet, though healthcare people are first on the list, so mine will not be soon.

Yes, keep life regular. I am glad your husband has you as a caretaker, because in gvhd, every small symptom can spread quickly. Kudos for finding that guilty detergent!

Please do take care, and we look forward to good news from Ed.

Meri

[John T]

Originally Posted by quantpsyc

John your numbers look great., no worries on your end for platelets. And Jakafi seems to agree with you!! I think Ed's issue was that with already low platelets, the expected bump down on the Jakafa was critical for him.
He has been at 100% donor for over a year (bmt May 2019) His platelets recovered to normal levels before dropping precipitously. Maybe ITP, maybe GVHD. Maybe some of the cocktail of meds he is on. They admit they just don't know but the Dx on record is ITP.
Ironically he now has been diagnosed with a blood clot in the leg. They say his body is overcome pensating to the low platelets by trying to clot faster. BC of the low platelets they can't put him on blood thinners, so this afternoon he gets an IVC filter put in to avoid movement of the clot to the lungs.

I am also on an insulin pump and when platelet levels were low I would get bleeding at the infusion site. My transplant team was highly concerned about the comorbidity of diabetes.
Cloting with low counts seems like a rare occurrence but then only 1 in 100,000 get MDS. I was concerned about this due to my in and out of the hospital over the past 2 years and the inability to move around much there.

I have looked but I can't find any reference to ECP on the interwebs?

Drugs.com has nothing unless I am missing something.

[Neil Cuadra]

Originally Posted by John T

I have looked but I can't find any reference to ECP on the interwebs?

ECP stands for extracorporeal photopheresis. It's a treatment, not a drug, and it's used for graft-versus-host disease (GVHD).

From https://www.emedicinehealth.com:

What Is ECP for GVHD?

Extracorporeal photopheresis (ECP) is a second-line treatment for GVHD that involves extracting white blood cells, treating them with UV light and medicine, and then re-injecting them into the patient.

[John T]

Originally Posted by Neil Cuadra

ECP stands for extracorporeal photopheresis. It's a treatment, not a drug, and it's used for graft-versus-host disease (GVHD).

From https://www.emedicinehealth.com:

What Is ECP for GVHD?

Extracorporeal photopheresis (ECP) is a second-line treatment for GVHD that involves extracting white blood cells, treating them with UV light and medicine, and then re-injecting them into the patient.

thanks for the info, I will ask about this treatment on Monday along with any updates to Covid vaccine status.