[Kathleen Till]

Facebook pages

Fight Myolodysplastic Syndrome

Also I have a page about my journey through transplant if you are going that route.

Kathy’sMDSbattle

Wishing you the best.

Kathy

[Kathleen Till]

Sorry cannot help you.

I went to Moffitt in Tampa Florida and they were great for me.

One year out from transplant Sept 9th was my 1st birthday.

Hope you get help on here.

If you are on Facebook there is a great MDS page on there I belong to it. Lots of information, but one must always check with ones doctor for medical advice.Fight Myolodysplastic syndrome
Hope I spelt it correctly

Kathy

[Kathleen Till]

I had my transplant at Moffitt in Tampa, Florida.
I had a 10/10 match and we were both negative for CMV, which I understand is unusual and great.
I was only on 2 pills a day for 14 days before transplant. 200 mg each one.
Not on anything now except viral pill for another year until I can get Shingles shots.
My Venclexta was just to kill the blasts.
Kathy
🙋‍♀️❤️

[Kathleen Till]

Your email came into mine but replied and it went to MDS foundations do not reply box.

Here is what I wrote.

I was on Acacitine for 4 months before transplant.
Biopsy showed blasts were still too high.
They did another chemo along with Venclexta. Did the job 28 pills over 14 days and went into remission.
If you are not going for BMT then not sure how this would work for you.
I had MDS EB2 with trisomy 8 extra chromosome.
Had transplant last Sept 9th at age 73 and doing really well.
If you are on Facebook sign in to this page, lots of help from everyone
There.
Fight myelodysplastic syndrome

Do not think my other message will reach you.

Good Luck

Kathy

[Kathleen Till]

There is a really good MDS site on Facebook if you are on there. People share so much stuff on MDS.

Fight Myolodysplasticsyndrom

Think I have not spent it right but spell correctly and out in on Facebook.

Kathy

[Kathleen Till]

Can he not have a Stem Cell Transplant. I had one last Sep and I am 73.

[Kathleen Till]

I had mine Sept 9th last year in Moffitt in Tampa Florida. I was in for 21 days, then had to find an apartment close to hospital for two months. If you live close, within 15 mins you can go home, otherwise apartment. I was five mins from hospital, which was great as sometimes you have to visit twice a day and at least once a day for over two weeks. It really depends on how much progress you make. I was exceptionally lucky that I did really well and doctor let me go back home after 62 days.Usual time is 90-100 days.
I had a friend look after me during that time.
I. Hospital my daughter stayed with me all the time in my room. They had a sofa bed for her which was very comfortable and they provided the sheets and blankets, she could not leave the hospital because of Covid and I could have no other visitors at all, not even my husband.
The hospital will give you a booklet to read and it goes through everything you might need for your stay.
You have to wash all your clothes after only wearing them for one day, that is the hardest to do, good to take a supply.
The hospital I was in provided other things, like massages in your room, arts and crafts, music recitals and physical therapy.?
You should have been given a lot of this information already. You can call LLS Lymphoma and Leukemia Society and they will give you a lot more info about everything and grants etc.
Hope this helps. There are also some good groups that you could join on Facebook if you use it. I have two that I belong to and lots of advice given there.
Kathy

[Kathleen Till]

Have they given you a biopsy to see where you are blast wise.
I had high level MDS and had to have a Bone Marrow transplant, which I had at Moffitt in Tampa on the 9th September.
Doing really well and last biopsy showed no signs of MDS.
I am 74 in June.
Kathy

[Kathleen Till]

I had transplant on Sept 9th last year. Just over 6 months out now. Had slight GVHD in digestive system but did not last. They gave me some medicine and it cleared up. Most people get some stomach problems at first, I think mainly because the chemo changes the taste of food. I did not want to eat but as soon as they gave me the medicine it sorted it out.
Have not had any other problems except got fungal pneumonia but believe I had this when I went in for transplant due to the fact that I love gardening and my immune system was too low before to cope with it, was on a pill for three months and now cleared up.
I am happy with my progress but one never knows from day to day what might happen, but none of us know anyway so have transplant, keep exceptionally positive and take it day by day. Everyone gets upset stomachs and some sickness during treatment but do not let this get you down, it goes away.
If you do not have transplant and carry on with your treatment it will never go into full remission. I had MDS high level with Trisomy 8 chromosome.
I am 73 and was grateful to be a candidate for transplant.
We are all different.
Good Luck with your decision. Reading all the bad things before transplant is not always a good idea. I left that to my daughter to do the worrying for me.
She stayed in my room for three weeks because of Covid I could not have visitors. Having her there all the time was great. She gave up a lot to be with me, but she was the best medicine ever.
Sorry this is long winded. They let me come back home on day 62 which was great as usually you have to stay very close to hospital for 90-100 days. I am 45 minutes from Moffitt now. ❤️❤️❤️

[Kathleen Till]

Ask your doctor about, I think it is called Venclexta by Genentec. It is not approved for MDS as far as I know but my doctor put me on this before my transplant last September because my blasts were too high and they wanted them lower. I took them for 14 days and they put me in remission and my platelets went up from 34,000 to 505,000 far too high I know but I was going in for transplant and knew during chemo they would come down again.

This is a long shot I know but worth asking about. Probably not for you but who knows. During my five months of chemo before transplant my platelets got as low as 13,000 and I never had any platelet transfusion or blood transfusions.

They do carry a high deductible but the company will pay for them if doctor puts in order directly to them.

Certain people with other blood cancers are on these for months.

By the way I am 73. 42 is far too young but kids have been diagnosed as young as 9.

Good Luck with your treatments.

Hope this makes sense.

Kathy

[Kathleen Till]

That is a question for your doctor, I think.

[Kathleen Till]

Press the topic link and you can reply there.

[Kathleen Till]

BMT are done in Florida at Moffitt has one 60 days ago now.

Where are you located and how old is mum and is she fairly physically fit?

Not sure what you meant by in here though.

[Kathleen Till]

I had Vidaza for five months and mine was covered by Medicare.

Just has Transplant and Medicare covered that too.

Have a grant for prescriptions and that pays the cost of most of my Medicare co-pays. Also pays for my monthly Medicare payments, monthly prescription for RX and my supplemental.
The above I believe is only offered when you get a transplant.
At the moment we are only living in Social Security so we qualified for grants. You can still own a house and get these grants, they only take SS into account.

Hope this helps.

Kathy

[Kathleen Till]

I was having chemo for high MDS and caught a cold. It lasted 2 weeks and I
Got no Ill affects from it. I even managed to fit my chemo in but not everyday. Had no temperature.

I am now 49 days post Bone Marrow Transplant and doing quite well.

Kathy .

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