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Kathleen TillParticipant
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 .
Kathleen TillParticipantI just had Bone Marrow Transplant at
Moffitt Cancer Centre in Tampa. It is a long haul to get better but taking one day at a time. Certainly lots of hurdles to get over, but this is possibly the only cure for MDS.Transplant was in September 8th so very early days yet.
I am 73.
Kathy
Kathleen TillParticipantI just had Bone Marrow Transplant at
Moffitt Cancer Centre in Tampa. It is a long haul to get better but taking one day at a time. Certainly lots of hurdles to get over, but this is possibly the only cure for MDS.Transplant was in September 8th so very early days yet.
I am 73.
Kathy
- This reply was modified 2 years, 5 months ago by Kathleen Till.
Kathleen TillParticipantSue,
Had no idea you had gone through all of this for many years.Somehow I do not get notified when posts come up. My daughter told me you had been on.
Sent email today.
Hope you are keeping well.
Kathy
September 16, 2021 at 10:21 am in reply to: Any MDS patient having hot flashes (NOT menopause) #54980Kathleen TillParticipantIt is quite common to have these. I would just get them from my neck up, especially after drinking a hot drink. Just like the ones that ladies get in menopause.
I am in Moffitt cancer centre at the moment undergoing a BMT waiting for my stem cell to start working.
Kathy
Kathleen TillParticipantRobert,
I am in Moffitt at the moment undergoing a Bone Marrow Transplant. One week and a half into it. I have or hopefully had MDS High risk.
I wanted to mention the above and then go on about Moffitt. Moffitt does a lot of clinical trials so maybe, if you have not already done so, get in touch with them with the hope that they may have something up their sleeve for you.
I was told the other day that they have the largest research and clinical trials offered in America.
I do not know anything about your MDS so will check it out.
I was very fortunate at my age (73) to be put forward for a transplant. They transplant if you are fairly fit up until around 80.
Moffitt is a wonderful hospital and I am putting all my faith into them to get me through this.
Good luck and hopefully you find something to help you.
Kathy
Kathleen TillParticipantSue,
Here is gmail and I will give you my other email later.
Thank you for taking the time to care. I would certainly do the same for anyone.
Kathy
❤️🙋♀️
Kathleen TillParticipantSue,
How do I get to correspond with you privately. I do not mind putting my email on here, is that allowed?
I came into Moffitt yesterday had my first 30 minute round of chemo last night. Okay at moment but know it will get worse – who knows we are all different.
Two more nights of this chemo then this chemo again plus the stronger one.
Let me know.
Thanks for all your help for all of us.
I am on the 4th floor W in Moffitt and all the doctors, nurses, techs and cleaners in here are wonderful.
Kathy ❤️🙋♀️
Kathleen TillParticipantSue,
Thank you for the kind words and taking the time to get back to me.
I will try and give you an update. I moved to Dunedin, Florida in 2018 from Danville CA and originally from the UK.
Kathy
Kathleen TillParticipantI was diagnosed with MDS high risk in April this year. Had Vidaza for four months then another biopsy which showed 5.8 blasts so not low enough to go ahead with my transplant in August. Strange thing is the hospital that did first biopsy said my blasts were 6-7 and the other day Moffitt told me they did their own analysis of the slides and I was at 10%.
They put me on Vidaza 7 days again with Venclaxta for 14 days and when i got my biopsy results last week my blasts were at 0.5.
Since then my platelets went from 34,000 to 505,000 which is now high.
I go in on Saturday for my BMTransplant, could not risk being in remission and then it turning to AML because of my high risk. I am 73.
Hoping all goes well. My daughter will be in my room for a month with me as they are now not allowing visitors and only a caregiver can stay. If she leaves she cannot come back in and neither can anyone else. We both have to have Covid tests tomorrow.Different hospitals have different ways of testing so different results which is crazy.
Kathy
Kathleen TillParticipantHave you had a biopsy lately and if so what were your blasts.
I am going in Saturday to Moffitt for BMTransplant. Today I got the great news that the Venclaxta they gave me with my last chemo worked so well, I am now in remission. Because I am high risk still need the BMT for complete cure.
I used to live in Danville, CA and there is a cluster of MDS there.
Take care
Kathy
Kathleen TillParticipantI am high risk and hoping to get BMT this Saturday 4th.
I have some health problems but pretty fit for a 73 year old – I think.
How old are you and why have they not tried Azatidine on you? I guess because of your health problem.
Read my other post. I am with Moffitt and live in Dunedin.
Kathy
Kathleen TillParticipantI was on Azacitidine 7 days a week for four months. I was due for Bone Narrow Transplant in August, but after my biopsy they cancelled it as my blasts were too high.
They then decided to give me more Azacitidine along with a fourteen day course of Vendaxta pills 200 msg.
Had biopsy last week and it appears it has helped not sure how much yet. Strange thing is my platelets went up to 409,000 from 34,000 having been as low as 13,000. My whites are really low but this is what the pills do.
I am due to go in this Saturday 4th September. By the way I am 73 now. I am getting anxious now though.
Hope this helps.
Kathy
Kathleen TillParticipantMinnie,
I cannot really help with this but want to say that I have high risk MDS and was going to have bone marrow transplant two weeks ago.
Unfortunately, my blasts were not low enough so I was given Venclexta along with my regular 7 day chemo treatments. I took 200 mg for 28 days. Finished a week ago.
Having biopsy on Monday to see if blasts have gone below 5, which I think they have. Reason is my platelets were at 34,000 and yesterday rose to 134,000.
That’s all the info I have and if biopsy is good then BMT will be Sept 4th. It has been an agonizing wait, total five months of chemo.
Kathy
Kathleen TillParticipantMine were as low as 13,000 but they do not usually give until under 10,000.
I am waiting for BMT and on chemo. The other day my platelets went to 99,000.Sorry cannot help you more.
Kathy
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