MDS-from diagnose to transplant in 9months.

[Cheryl C]

I have been told not to have the Covid vaccine - at this early stage anyway. We are nowhere near any hot spots.

[Meri T.]

Cheryl,
I supposed it depends on the doctor, they know us a bit more, so asking them about the vaccine is the best way.
I'm glad you are not in the middle of the "hotspots" as I am now.
Please take care.
Meri

[Meri T.]

My doctor suggested I test for other cancers, so I did, I tested for Lung, breast, uterine, and colon cancer. I couldn't stomach the valium so I didn't do the stomach cancer test. Then bone level tests and HepB and HepC were good. Just a bit anxious awaiting the results.

John, I hope you are alright, I heard Dallas was not doing well in this freeze. Keep safe.

Meri

[John T]

Originally Posted by Meri T.

My doctor suggested I test for other cancers, so I did, I tested for Lung, breast, uterine, and colon cancer. I couldn't stomach the valium so I didn't do the stomach cancer test. Then bone level tests and HepB and HepC were good. Just a bit anxious awaiting the results.

John, I hope you are alright, I heard Dallas was not doing well in this freeze. Keep safe.

Meri

I am doing ok, power stayed on during most of the great Texas blackout of 2021. I also have solar panels, backup batteries, and a generator in case of power loss.

I was cleared by my transplant team for the Covid vaccine and am scheduled to receive my first dose this afternoon.

Where are you staying these days?

[John T]

Received my final Pfizer vaccine yesterday exactly 3 weeks after receiving the first dose, nothing dramatic in the way of side effects.

[Meri T.]

Hello John,
Good job on the vaccines! I am very sure the shots will give you that peace of mind while in public.

I am in Tokyo now, I would not miss the Sakura season for anything. I used to get hay fever with all the pollen during this season, but ever since transplant, my hay fever has gone, totally gone.

Good news everyone, results for all those secondary cancer tests came out good : colon, cervical, lung, breasts, hepB and hepC, bones over average.
No cervical cancer, though vagina cells are abnormal. Most of my girl friends all have the same results after transplant, so I'm not worried.

I will do a blood test next month, I haven't had one since last Summer, and will update the results for you all.
Take care everyone.
Meri

[Meri T.]

Hello everyone,
It's been 4 years stem cell transplant, and the counts are great. Showing off a bit here :
WBC 5.7
RBC 4.12
Platelets 174
Hemoglobin 13.3
The segs, lymphs, and other AST ALT numbers are good too.

Every person with MDS is different, so what is good for me might not be for everyone, but I have never regretted having a transplant.
Meri

[Rarity]

Congratulations Meri! You certainly earned the right to show off not a little bit... but a whole bunch! So proud of you! Keep up the good work! Keeping you in prayers as always.

Take Care,
Rarity

[John T]

Medical Team says they have seen this with several patients taking Jakafi.

Good video documenting what its like to live with GVHD.

https://youtu.be/DI0TOq_gHEY

[Hopeful]

Congrats Meri T! Those are impressive counts!

[Meri T.]

Hello everyone,
I have an appointment for my 5 years post transplant LTFU (long term follow up) in two weeks. I was going to wait for all the results of the blood counts to share with you, but I'm a bit excited since all is going well, and I'm certain the counts will be fine, so I just wanted to log in and ask how everyone is.
My hospital graduates most of their patients at the 5 year mark, and let us come in twice a year. Maybe making room for new patients.

Actually, I'm still taking some medicine, acyclovir for shingles, bone density, bactrim and gerd meds. And I'm still taking all the shots that I lost when I had my transplant, very late, but after transplant I was doing prednisone, and then during the pandemic, we weren't allowed back in the hospital. I had most of my appointments through the phone, and the prescription was sent to me. Insurance doesn't cover the cost for the shots, and every shot makes me wince, do I really need polio and DPT shots etc at my age? I know I do, but still this disease costs too much.

I have all 3 COVID shots done, and after this 5 year appointment, I might just be able to tell that inner voice that I won't relapse any more. Neil, Ruth, Dan, Mario, Rarity, John and everyone, hope you are all doing well.Hope to hear from everyone.

Meri

[Marlene]

That's great news. Glad things are working out for you. Thanks for coming back to share good news.

Wishing you continued good health.

[Meri T.]

Thank you Marlene for your kind words.
I was also thinking about you and all the caregivers out there. Without you all, we patients would have a very hard time. It's not only from the few agonizing months from diagnosis to transplant, but from all the years that follow, listening and understanding all our setbacks that come in this disease.

[Rarity]

That's fantastic Meri! So glad to hear you are doing well. Keep up the good work. Do the happy dance!

My husband relapsed into AML. He has had several relapses with several treatments, 2 failed DLI's in and out of remission since progressing He will be admitted for a 2nd transplant the end of this week.
It's been quite the journey for the last 5 years, two of those he did very well. He is quite the fighter and is admired for all he's been through and going through. I do check in to read for more hope. It has been quiet.

Wishing you all the best and continued good health. Thanks for thinking of all of us! And to all who understand.

Rarity

[Meri T.]

Hello everyone,
My hospital "graduates" us after 5 years, and I am doing so well with blood counts.
WBC 5.5
RBC 4.0
Platelets 181
Wonderful isn't it! No lows no highs!
Yes, I am in remission, but my doctor would not say that there will never be a relapse. He wouldn't confirm that, and I totally understand, I'm just so grateful about today and how far I've come, so why worry about what might or might not come.

The doctor wanted to know about my lingering sinus problems and my IBS, then advised me to do my annual checkup for all those cancers. We have an annual that covers lung, stomach, colon, breast, uterus cancers, etc, and he suggested a colonoscopy for safe measure. I did have stage 4 gut liver after transplant so he wants to make sure everything is going well in my gut. And also to check on my bones too.

Secondary cancers come for some people after transplant, and all those steroids really messes up our bones and teeth. Once I came off prednisone, it was like giving my bones and teeth back to their former glory, it was so bad when I was on that drug. You cut prednisone, you cut off so many drugs that pred makes you need.

Thank you Rarity, your husband is in my prayers, and you too! I hope the summer will help him with his fight against AML. Hopeful, I am glad you are doing well too!

I am doing non profit work at church, helping the immigrants due to covid. I love my work ! When I bring them to the hospitals, I try to be their best advocate. Just because they don't speak the language doesn't mean the treatment is lacking. I think when there is someone speaking on their behalf, the patients worry less, and the doctors are confident that their information is properly delivered.

I took my third booster, Moderna, it took me down a few days with a terrible fever. I so hate moderna, because the the first two Pfizers were so nice to me. If it's moderna, I do not want the 4th shot.

Lastly, I would like to thank Neil and Ruth for having this forum. And all the people who commented on our posts. I learned a lot from everyone of you. You are all in my prayers.
And yes, I will be back in California for Christmas! So love the lights, the choirs, the Christmas trees.

Meri

[John T]

Wonderful news Meri T.

[Meri T.]

Hello everyone,
I hope you all are doing well, both patients and caregivers. My 6 years post transplant is coming up, and I am doing very well. I am only taking vitamins, probiotics, and sinus meds. I have chronic sinusitis, my fault, I didn't wear masks when I was gardening or going out, so the sinus never got treated properly turning it into chronic, though it can be managed with meds by my ENT doctor, not the transplant team anymore. So not complaining about it.
I've been in remission for 5 years, my counts are very good, and I don't think my hematologist even looks at my counts anymore.

I've taken all my shots, from Tdap, MMR to Shingles, my COVID shots too. Tomorrow I have a flight, a cross Atlantic flight, and I'm not nervous like I used to be.

However, I've changed my eating habits, I don't like raw food even sushi or sashimi, I like to drink hot tea than iced drinks. I don't like group gatherings and I like to be by myself more, I still don't like shaking hands, hugging, maybe I'm still afraid of catching germs my new abnormal
Thank you John, hope you are doing well, too, and all my friends on this forum, especially Neil and Ruth, thank you and wishing you all the best.
Meri

[Marlene]

So happy for you. It's always good to hear good news.

Wishing you continued good health

[Rarity]

Hi Meri,

So awesome to hear you are 5 years post transplant and doing very well! This news gives hope for others!
Have a safe trip and enjoy! You certainly deserve it!

Take care,
Rarity

[Meri T.]

Hello everyone,
Every year I like to come back to this forum and say hello to wish you all the best, and update everyone on my health. I was diagnosed in 2016. My stem cell transplant was in 2017, and it's been 7 years already !

I moved to California last year, the weather in the Bay Area is wonderful!
Before moving, I said farewell to my hematologist in Tokyo, he was the best during my transplant and helped me with my acute and chronic gvhd complications. I've tapered all steroids for a few years already, my gvhd has burnt out, and my chronic sinus is behaving too, thank goodness. The doctor said I don't need any more medications.

I have a new hematologist here in the Bay Area, and after seeing my blood counts,
WBC 6.9 RBC 3.91 Plts 165 Hmg 12.3
the new hematologist also stated I did not need any more meds, and if I'd like, I could have vitamins to booster my strength.

I've received all of my vaccinations and even a colonoscopy, the results were good.
I now have a part time job at a school near my place, the pay isn't much but I can socialize and feel like I'm helping with my neighborhood.

It took me 7 years, though some of my friends were good after 2-3 years, but I'm 58 already, so no complaints there. I can finally enjoy not having to worry about doctors appointments, blood results highs and lows, and time to take meds. I so hope this will happen to all of the patients in this forum. My best wishes and prayers to all the caregivers too.
Thank you John, Marlene and Rarity, I hope you are all doing well.
Thank you Ruth and Neil.
Meri

[Marlene]

So good to hear your progress. It's a strange feeling to be able to lead a normal life once again. But I'm sure you'll adjust quickly...it feels prety good.

John and I are doing well. We now deal with all that comes with our 70th decade of life. But it's still better than having to deal with SAA.

Wishing you continued health.

Marlene

[Hopeful]

Congratulations Meri T! It is great to hear that you are doing so well!
It is also nice to see your positive updates on John, Marlene.

I am doing well as well - still on low dose cyclosporine. I may hold the record for that drug.

Wishing all the best!

[Rarity]

Hi Meri,

I am so happy to hear you continue to do so well! My husband is getting there from his 2nd transplant. This one was a lot tougher but he is doing well now.
Thank you for thinking of us when you post!

All the best!
Rarity

[John T]

Originally Posted by Meri T.

Hello everyone,
Every year I like to come back to this forum and say hello to wish you all the best, and update everyone on my health. I was diagnosed in 2016. My stem cell transplant was in 2017, and it's been 7 years already !

I moved to California last year, the weather in the Bay Area is wonderful!
Before moving, I said farewell to my hematologist in Tokyo, he was the best during my transplant and helped me with my acute and chronic gvhd complications. I've tapered all steroids for a few years already, my gvhd has burnt out, and my chronic sinus is behaving too, thank goodness. The doctor said I don't need any more medications.

I have a new hematologist here in the Bay Area, and after seeing my blood counts,
WBC 6.9 RBC 3.91 Plts 165 Hmg 12.3
the new hematologist also stated I did not need any more meds, and if I'd like, I could have vitamins to booster my strength.

I've received all of my vaccinations and even a colonoscopy, the results were good.
I now have a part time job at a school near my place, the pay isn't much but I can socialize and feel like I'm helping with my neighborhood.

It took me 7 years, though some of my friends were good after 2-3 years, but I'm 58 already, so no complaints there. I can finally enjoy not having to worry about doctors appointments, blood results highs and lows, and time to take meds. I so hope this will happen to all of the patients in this forum. My best wishes and prayers to all the caregivers too.
Thank you John, Marlene and Rarity, I hope you are all doing well.
Thank you Ruth and Neil.
Meri

Hi Meri, Good to hear you are doing well after 7 years. This August will mark my 6th year post transplant and I am still dealing with GVHD and taking Jakafi and Rezurock. Someday I keep thinking one day I will hit that point were I can finally make peace with my inner Dutch girl donor. There is a FB group Graft-versus-Host Disease (GvHD) I am mostly on these days and there was a woman that had a transplant in Japan that made me think of you. The group has over 4.8k members.