Hi and Hello

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chris
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Re: Hi and Hello

Post by chris » 11 Jan 2019 20:01

Hi Tina

I'm currently weathering a bacterial sinusitis infection - something I've never had before and would NOT want again!! After a week of high temperatures, headaches and General whackedoutness, we called the doctor who sent out Emergency care team who did all the checks and then did blood test to check it was bacterial. It was! So got some anti bs Tuesday night and am slowly getting back to normal!
Thanks for asking.
Brilliant Newsletter article. I hope the Aza continues to work well for you. It sounds very positive in terms of the blast count. We have somebody in our local group who had a failed SCT (relapsed after 2 years) and he didn't want to go through that all again so he's been on Aza for over 30 cycles and is doing ok.
Take care
Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 15 Jan 2019 13:57

Hi All, I hope everyone is as well as they possibly can be and that whatever treatment you are receiving is working and providing relief and improving your condition.

It is now 10 months since I was diagnosed with hyperfibrotic MDS and given a 9 month prognosis without a SCT and about 6 months since i started this thread . ( I have just noticed how suddenly everything becomes 'time referred'; so many days to next appointment, prescription, biopsy, etc. So many weeks post transplant, day zero etc.) Anyway my transplant was deferred a few days before i was to have my central line fitted as my cell counts were ever so gradually improving. 3 months on from the initial transplant date I have been released from the Freeman Transplant Team and under the care of the regional Haematologists. My last red count had just topped 101 from a low back in April 18 of 58 and my platelets and white cells are around half of their normal values. It is not known why or how the improvement has come about, the condition is still there and I continue to be immuno-compromised but i am functioning at around 60-65% not bad considering the initial prognosis.
If this can happen to me it can happen anyone. Do not give up hope, let the doctors look after your body and you look after your mind. For some reason i remember gorging on fruit all day. everyday for weeks during the summer, fresh orange juice, kiwis, grapes, lemons anything I could lay my hands on it was a need, a craving ( and very out of character). I am aware that the body is unable to store Vit C and so it was being barraged with huge quantities of it on a daily basis (not good for the tooth enamel) then i read an article in the last MDS mag about the potential of Vit C at a base cellular level and wondered......
Anyway enough of my ramblings, I am back for my 2 monthly blood check tomorrow to see how the machinery is working. So fingers crossed.

Wishing everyone the very best of wishes and suck an orange (just in case!)

Paul x
christina
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Re: Hi and Hello

Post by christina » 16 Jan 2019 19:00

Hi Paul and Chris nice to read some positive news and hope the antibiotics are kicking in, love to read someone is on 30th cycle of azacitadine, gives me hope, I'm feeling very lucky and last week got back into my Nordic walking and back to choir practise twice a week with Outsing Cancer, really trying to get my stamina back, think it's important to keep moving and staying positive. My new passport arrived today so hopefully may be able to use it in the not so distant future, this is the first time I have spent a January in the UK for 10 years and forgotten how gloomy it is, so would like it cold bright and sunny, keep well Tina
christina
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Re: Hi and Hello

Post by christina » 18 Feb 2019 16:24

Hi where has everyone gone, haven't been on for awhile and I was the last one showing, hopefully you are all doing OK. I seem to be responding to the azacitadine and my blasts have gone down to 4% so start my 11th cycle next week, still having to have transfusions every 2 weeks but back to my Nordic walking and singing with the choir "Outsing Cancer" so life pretty normal, good wishes to you all x
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 03 Mar 2019 14:26

Hi Christina,
I am so pleased that you are making good progress and have returned to your Nordic Walking and are singing against cancer. I would join in but I refer snow under my poles and I cant hold a note !
I am due back for my 3 monthly check up. The people in the know still do not know or are not giving away what has caused the reversal in cell degradation but last counts were Hb 109, white cells 2.4 and platelets 109 an almost doubling in figures over 10 months. Considering i was given 9 months left to play in April of last year my time should be up but for some reason the body is fighting back. It is still there, possibly re-grouping but I shall continue regardless. Back to the Western Cape at the end of the month for 3 weeks and catch some late African summer sun I shall give the Continent your Best regards.

Fantastic to hear you are doing so well. Keep going . Best wishes to all of those who stumble across these threads. Never give up you look after your mind and let the docs look after your bod. Harry I do so hope your wife is feeling a little better the bone pain is unlike anything i have felt before so my thoughts and best wishes are with you . DTUB10 I hope you are doing well and responding to the treatment you regularly find yourself into my thoughts.

Paul
christina
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Re: Hi and Hello

Post by christina » 03 Mar 2019 22:20

Hi Paul really pleased to hear all is good with you, have a great time in South Africa, beautiful country and beautiful people. All still fine here, am now taking vitamin D to see if that helps the bone pain in my legs, I'm ok when walking and moving but very painful at night in bed, also doing some regular exercises to see if that also helps, not a lot of us left on this site but I check it now and again, the face book page had come to much for me. Go and enjoy every minute of your holiday, I'm sure you will warmest regards Tina (Christina)
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 03 Mar 2019 22:29

Good to catch up on recent posts, especially the one from Paul who kicked off this thread.

I had my stem cell transplant on 22nd February from a 10/10 match unrelated donor. Hopefully there will be some signs of engraftment this week.

My bone marrow never recovered from the second cycle of Flag Ida chemotherapy, so I was already neutropenic before the transplant conditioning started. At least I was in complete remission from the AML.

I was fortunate to have the reduced intensity conditioning, with no radiotherapy, so I haven't suffered from any mucositis (yet) thank goodness.

Needless to say I have had some nasty side effects from some of the chemo and anti-rejection drugs, but most have been short lived.

I will let you know about my progress over the coming months. After four months in hospital I can't wait to get home.
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 04 Mar 2019 09:09

Tina and David great to hear from both of you. David fabulous news on your SCT wishing you every success with engraftment. I bet your family will be looking forward to having you home. Stay strong it has been a battle to get this far now sit back as best you can and let your body recover.
Great news .

Paul
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 15 Mar 2019 20:34

Hello again everybody,

Paul - I hope you enjoy South Africa. I am still in Hammersmith Hospital recovering from my SCT which was exactly three weeks ago.

I have found this four weeks tough. but having already spent three months in hospital and been through two cycles of chemo, I was already quite run down. They called it reduced intensity conditioning, so I would hate to think what the full monty is like!!!

The dreaded mucositis caught up with me, but I managed to avoid an NG tube with the help of lots of morphine. It has passed now, but I continue to experience multiple side effects from the cyclosporin and magnesium infusions.

The good news is that engraftment has taken place and my counts are rising slowly, with the occasional fall back which gets me worried. The doctors seem happy with my progress and I look set to go home next week, if I can avoid infections or GVHD. I then have a big bag of medication and many months as an outpatient to look forward to, but at last I feel that I have turned a corner and may be free from blood and platelet transfusions.

It hasn't been easy, but I still count myself as very lucky. Along this journey I have met many people in a much worse place than me. Many of them were on palliative care. If the transplant keeps working and I haven't relapsed after two years, I will try to thank my wonderful donor in person.

I will continue to keep you posted.

David
David Age 60(M) dx MDS Aug 2018 no genetic mutations. Progressed to AML with FLT3 in Oct 2018. Three rounds of chemo. SCT Feb 2019. Relapsed June 2019 - Now on Azacitidine, Venetoclax. DLI to boost the SCT has caused skin GVHD.
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 16 Mar 2019 08:28

Hi David,

It sounds like you have been through the mill but you could be on the final straight with home just around the last bend. Okay enough of the metaphors !

I am so pleased that engraftment has happened and i am sure that cell counts will bob around for a short time as they make them selves at home. I guess it is to be expected. Your family will be desperate to get you home and look after you. It'll be nice to be in your own room and bed again. Although the unit staff are so kind and attentive there is really no place like home and your own bed.

You have done brilliantly to get to this point and hopefully the worst is well behind you. Just keep the mind strong and let the professionals look after your bod. I was back in for a blood test last Wednesday and my counts have levelled off I am running on about 63% which is a hell of a lot better than many so i am not complaining. Africa will be a nice break , their early Autumn so not too hot but still plenty of wildlife out and about. We have a few activities planned which I am looking forward too, a few more off the bucket list.

Please keep in touch and let me know your progress. Again, double pleased to hear your news, stay strong and keep getting better.

Paul
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