Hi and Hello

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CWDN32
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Re: Hi and Hello

Postby CWDN32 » 06 Sep 2018 20:01

Hi all had first appointment with haematologist at centre of excellence 28th August, the a second bmb today, back to see haematologist on 18th September. All required samples were gained from today's biopsy, now just a waiting game again, I'm now having weekly transfusions. Though they have dropped quite a bit this week, I think partly my fault, I was away with 2 coach loads of people at the weekend in Blackpool, I had an accident on Saturday fell down a number of concrete steps outside the hotel, and no I wasn't under the influence, perhaps a bit disorientated and possibly low blood sugar.
Anyway I survived, but bled from grazed knee till middle of next day, bad bruise on my arm, I will make sure in future I look for steps.
What gets me is thus all seems a waiting game on everything, I was told by haematologist I'm unsuitable for sct due to copd and enlarged liver and spleen, which I did think would be the game changer, he told me I was too high risk.
He then was offering aza chemotherapy to hopefully improve my well being, until he saw my first bmb was incomplete, then he said he couldn't say till after the second bmb had been discussed in multidisciplinary meeting, at what point is it right for them to decide I'm not actually worth the risk of sct, I know it would be the main thing to increase my mortality should it be successful, should the risk not be my choice, I have family and friends who I'm important to, same as most people, I feel I'm worth taking that risk for.
I don't want to go through illness from chemotherapy and the possibility it does nothing, I'm just a bit bewildered that decision is taken from me, when it at the end of the day is my body my life which to me is important to do do the best to survive as long as I can.
What would your opinion be. I'm just so uncertain what my future holds now. Yet still in shock from initial diagnosis.
I hope you're all well as can be and so sorry for such a long post concerned to say the least.
Oh and today got photos of my samples x 8-)
christina
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Re: Hi and Hello

Postby christina » 07 Sep 2018 22:13

Hi good to read your story and experience, I was diagnosed 2009 and have led a normal life thanks to medication and the skill and support of doctors and nurses, however I stopped responding to Revlimid after 5 yrs and earlier this year had to make the decision whether to have a transplant or go on to azacitadine, it was a hard decision to make, one I shared with my husband and family, I am 72 and have led a very full life and I made the decision to go for quality of life instead of quantity, I don't know if it was the right decision but I do know it was the right decision for me, its such a personal thing and no one can advise another, also we are all so different, I do know that every time I have walked out into the garden this summer I have given up thanks and I'm appreciating every day, I'm ony 5th cycle of azacitadine and hopefully it will work for me if not I may have to be having to make another decision, but am feeling positive, wishing you all the best Christina
PSRNE30
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Joined: 16 May 2018 10:00
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Re: Hi and Hello

Postby PSRNE30 » 09 Sep 2018 15:26

CWDN32 wrote:Hi all had first appointment with haematologist at centre of excellence 28th August, the a second bmb today, back to see haematologist on 18th September. All required samples were gained from today's biopsy, now just a waiting game again, I'm now having weekly transfusions. Though they have dropped quite a bit this week, I think partly my fault, I was away with 2 coach loads of people at the weekend in Blackpool, I had an accident on Saturday fell down a number of concrete steps outside the hotel, and no I wasn't under the influence, perhaps a bit disorientated and possibly low blood sugar.
Anyway I survived, but bled from grazed knee till middle of next day, bad bruise on my arm, I will make sure in future I look for steps.
What gets me is thus all seems a waiting game on everything, I was told by haematologist I'm unsuitable for sct due to copd and enlarged liver and spleen, which I did think would be the game changer, he told me I was too high risk.
He then was offering aza chemotherapy to hopefully improve my well being, until he saw my first bmb was incomplete, then he said he couldn't say till after the second bmb had been discussed in multidisciplinary meeting, at what point is it right for them to decide I'm not actually worth the risk of sct, I know it would be the main thing to increase my mortality should it be successful, should the risk not be my choice, I have family and friends who I'm important to, same as most people, I feel I'm worth taking that risk for.
I don't want to go through illness from chemotherapy and the possibility it does nothing, I'm just a bit bewildered that decision is taken from me, when it at the end of the day is my body my life which to me is important to do do the best to survive as long as I can.
What would your opinion be. I'm just so uncertain what my future holds now. Yet still in shock from initial diagnosis.
I hope you're all well as can be and so sorry for such a long post concerned to say the least.
Oh and today got photos of my samples x 8-)


Hi Caroline,

It does seem you are going through the mill at the moment I do hope things improve for you soon.

Most of your questions are way out of my scope of experience and knowledge. The impact of COPD may obviously be a major factor in any concern regarding SCT but only your physician can explain in detail. I appreciate the frustration of the waiting game we all must go through, I get my 2nd BMB results tomorrow and then have to undertake a full days medical examination on Tuesday with all the usual organ function testing at the Centre of Excellence to confirm my physiological suitability for transplant at the end of the month. I would suggest that you wait for the outcome of the discussion between haematology and the transplant team regarding their concerns of potential SCT. Then at at that point you can decide to ask your questions and if necessary question any criteria upon which that have made their decision.

I hope this helps in some way.

Kind regards, Paul
Goldtooth
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Re: Hi and Hello

Postby Goldtooth » 10 Sep 2018 07:47

Hello Caroline,
I have just read your post and can greatly sympathise with your predicament.
I don’t know which type of MDS you have( there are several) or your age?
I was 71 when I was diagnosed with RAEB2 and too old for a transplant, which is too risky for someone of my age unfortunately.
Don’t be too be too dismissive of Azacitidine treatment, it works for me with very little side effects, fatigue for a few days after that’s all.
I start my 50th cycle next Monday providing pre Chemo blood test on Thursday is satisfactory.
Best wishes and good luck.
Anthony
christina
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Re: Hi and Hello

Postby christina » 12 Sep 2018 11:20

Hi Anthony gives me great pleasure to read your message and to know your doing well on azacitadine, I started my 5th cycle on Monday, it seems to be improving my Platelets and was told that meant I was responding to the treatment, however my hb is low around 73 which means every month I need a transfusion, did you experience that, when I was on Revlimid and EPO I went for 6 years without a transfusion, not that I mind but the 10 days before I'm dragging myself around, would be interested to hear how you cope and what you're able to do, best wishes Christina
DTUB10
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Joined: 20 Aug 2018 14:00
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Re: Hi and Hello

Postby DTUB10 » 12 Sep 2018 17:53

Hello everybody,

Thank you all for sharing your experiences. This is a difficult condition to understand, with so may different types of MDS giving different treatment options.

I am going to see a consultant on Monday 17th to discuss a BMT, six weeks after my initial diagnosis, so I hope to find out more about my type of MDS and the prognosis. At the moment I still need one unit of blood a week and my platelets are gradually dropping too. My big concern is that my WBC and neutrophil counts seem to be dropping too.

In the meantime I am taking all sorts of vitamin supplements and herbal remedies to try to boost my immune system. I have also radically changed my diet. Maybe I am wasting my time, but I have to try.

I am encouraged to hear about those who have done so well without the risky and unpleasant BMT, like Anthony and Christina.

Then there is Paul who is being considered for a BMT and Caroline who is not, due to other health issues.I suppose that our fate is decided by our type of MDS and how it progresses, our age and our general health. None of us have any control over these factors and it is no good regretting the lifestyle and habits that may have affected our health over many years.

I have come to the conclusion that all we can try to control is our current diet and lifestyle and our attitude to this disease, with the help of our loved ones. It is not easy to stay positive when you are scared or angry, but we can try to benefit from each other's example.

Please keep updating the post as we take this journey together.

Regards

David
PSRNE30
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Joined: 16 May 2018 10:00
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Re: Hi and Hello

Postby PSRNE30 » 14 Sep 2018 13:44

Hi David, hi everyone ,

I concur that by its very nature MDS is a complex and frustrating beast. I hoe your meeting with the consultant will provide you with more information regarding the species of MDS you have and potential strategies for you.

One thing to note regarding your multi vitamins ensure they do not include Iron (Fe) as your transfusions provide approx 100x your daily amount of Iron and you don't want to be building up unnecessary iron deposits. I am sure if someone has not mentioned Iron, the consultant will on Tuesday.

I too am going through a period of frustration; I visited haematology on Monday for my fortnightly blood testing to find my platelets have doubled and other counts have increased. This has fired off immense interest in Haematology which has now passed to the Transplant team whom I visited on Tuesday ( I was shown around and given schedule of treatment etc.lots of info and advice , fabulous facilities, even a play station in my room with a 50" flat screen) However, due to the increase in cell count they are holding a multi-disciplinary meeting to discuss my future treatment.

I am due to have my Central line put in on Wednesday so it is again a waiting game . I hate waiting games.

Best wishes to all,

Paul
PSRNE30
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Re: Hi and Hello

Postby PSRNE30 » 14 Sep 2018 14:21

Hi again,

Well I didn't have to wait too long. They have taken me off the transplant list! So, apparently the reversal in cell decline is sufficiently robust to merit cancelling the SCT scheduled for 03/10.
I am a bit dazed and confused.
Regards

Paul
DTUB10
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Re: Hi and Hello

Postby DTUB10 » 25 Sep 2018 17:17

Paul,

Sorry for the delay in responding to your last posts, but I have had problems getting onto the forum. I was shocked to see how close you got to your SCT, only to have it cancelled. I have found very little evidence of spontaneous remission of MDS, but it sounds as though you are moving in the right direction.

I don't believe in miracles, but maybe I will have to review my opinion. Have you made any lifestyle or dietary changes that may have helped, or is just another twist of fate?

Needless to say I am absolutely delighted for you, as long as the improvement in your counts continues until you are free of this horrible disease. I hope you don't have to go through the process of getting psyched up for the SCT again.

I am not much further ahead with my own SCT. No word of my MDS type or my brother's suitability as a donor. The blasts are over 5%, which makes the SCT more urgent, but the waiting seems endless. I see the SCT consultant again in two weeks time, so I am hoping for some progress. I have to go for transfusions twice a week now, because they are trying keep my platelets a bit higher after a few eye problems. This is a pain, because it means more needles, time off work and more traveling for very little benefit, because the platelets don't last for long.

Thanks for the heads up on the iron. I have eased off on the supplements and potions because they were upsetting my digestive tract. I also trying some alternative healing therapies, some a bit bizarre, but you never know.

Please keep me updated on your progress.

David

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