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chris
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Re: Hi and Hello

Post by chris » 17 Jul 2019 20:50

Dear DAWS9

It certainly sounds as though something is seriously amiss with the communication at your hospital and maybe this is something you could take up at some stage via an official complaint? It is unacceptable to fail to notify a patient of the results of a bone marrow biopsy and a serious illness such as MDS and let him put himself and others in danger by this lack of knowledge. It should not "filter down". You had several consultant appointments and I cannot believe that not a single one of them has given you a diagnosis yet? You are the patient and should have been told directly at the time at one of the consultations! As a first point of call, please ask your GP for copies of all letters received from the haematology dept at the hospital as they might give you some answers about the nature of your diagnosis. Maybe letters to your home address have gone adrift? (being charitable here!).

You say you have lethargy but I think most people with MDS would call it overwhelming fatigue ...... and it is fatigue like no other - exactly as you describe. What concerns me is that your haemoglobin might be dangerously low and falling asleep at the wheel and your recent exhaustion and sleeping patterns are NOT NORMAL symptoms. Clearly the B12 injections are not working and you urgently need to see an expert haematologist to find out exactly what is going on. If I were in your shoes , I would be phoning the GP and QE on a regular basis to try to bring forward your appointment date. Do you know what your haemoglobin count is? Maybe ask the GP for another full blood count test and contact Sophie again if you need help with understanding what they mean?

I really hope you get some answers soon Not knowing is so frustrating and worrying.

Take care

best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
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Re: Hi and Hello

Post by chris » 17 Jul 2019 21:16

Hi David (DTUB10)

I was also so sorry to hear that your SCT had failed and I echo Christina's response. It's such a complex procedure and there currently do not seem to be many ways to accurately predict who is likely to respond well and have a long-term successful outcome. So frustrating and upsetting when you feel you're out of the woods and approaching recovery. Just wanted to let you know that we have a member in our local group whose SCT also failed and he relapsed after 2 years but has been on Azacitidine since 2015 and is doing OK. I hope that gives you a wee bit of hope. Meanwhile I hope that they can treat the temperature rises and that you're continuing to feel well in yourself with not too many discomforts?

Best wishes
Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 05 Aug 2019 13:28

Hi Everyone, I haven't been on here for a while (March) and to explain why would probably sound a wee bit nauseous and trite after reading the posts since then .

David I am so sorry to hear of your disappointment at the failure of the transplant. You sounded fabulously happy and positive and as you describe this is a cruel and unforgiving disease. I hope you can pick yourself up and fight it again. Chris you sound as though nothing is going to hold you back you are an example to us all!

Well since the postponement of my SCT in October last year my cell counts have slowly, very slowly risen (without medication or transfusion) from 63Hb to the current 112Hb, leucocytes 3.7 , platelets 189 which is just under the low but normal range.

This has caused some significant consternation and interest in medical fields, they still do not know how or why this has happened, however they are trying to find out. I am donating marrow at request and it is hoped some form of mechanism can be identified which has triggered the cellular self repair. So hopefully it can be of benefit.

As a point of note; regarding SCT there is now a treatment footnote for patients symptomatic of MDS (Hyper-fibrotic and possibly other types) of the potential for self-repair and the potential for a 'wait and see' period to identify if self repair is initiated prior to a transplant obviously dependent on the condition of the individual.

I am still on the 'watch ' list, retired and active.

My hopes, thoughts and support go out to all who are being affected by this git of a disease. Don't give up hope, day by day or hour by hour whatever works for you it can be beaten.

If anyone wants to natter or ask anything please feel free either on here or pvt me (don't think i can donate marrow just yet!)

Sincere best wishes,

Paul
chris
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Re: Hi and Hello

Post by chris » 12 Aug 2019 16:51

Dear Paul

Thanks for your update.You shouldn't feel bad about posting good news on this Forum as we all need to hear it - particularly when it's a bit of a mystery as yours is! The idea that you've gone from being at the brink of undertaking an SCT to significant improvement in blood counts is a rarity among people affected by MDS so I'm sure we will all be really interested to see what might be the explanation. Do keep us posted! I've been to lots of conferences at which specialist haematologists from around the world have spoken on a range of topics but I have never experienced anybody talking about spontaneous remission from MDS. Logic tells me that EITHER your original diagnosis and prognosis were incorrect OR something has happened to bring about the changes that are occurring. What those changes are is the million-dollar question!! But, whatever the reason, it must be such a relief to you and your family and long may it all continue to go in the right direction. :D

My own diagnosis in 2008 of an MDS-type CMML (chronic myelomonocytic leukaemia), was equally scary - a leaflet I read at the time gave a median survival of 12-18 months. Pretty despairing about that as I didn't find the leaflet until after I had been diagnosed for about a year and there were signs that the CMML had already been present for about 5 years before that!! Anyway, 11 years on, still thankfully no treatment and the Prof said on my last consultation that my CMML seemed to be very "well-behaved" ! (My husband just about restrained himself from saying "Pity the patient herself isn't"!). Prof is doing NGS (Next Generation Sequencing) on my latest blood samples to see if there is anything in my DNA which would explain anything. It still hangs over me like the proverbial sword of Damocles, but I think less about it now than I used to and am fortunate to be unaffected by low Hb so have a reasonable amount of energy for a 69 year old!

Keep on doing what you're doing. I was very interested that you had a fruit/ bitter juice craving and binge a while before improvements started (you mentioned Tim Chevassut's research into Vitamin C and its effect on the TET2 protein which helps the body form blood cells ?). Who knows?!

best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
PSRNE30
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Re: Hi and Hello

Post by PSRNE30 » 18 Aug 2019 17:35

Hi Chris,

Thank you for your reply I am glad to hear of your continued energy levels.

Indeed at the moment the consultants at both the local haematology unit and Freeman specialist Centre do not have an answer as to why my cell counts gradually began to improve. The original diagnosis was indeed confirmed as Hyper-Fibrotic MDS with a high proportion of immature red cells and significant fibrosis with collagen and reticulin fibrils. Researchers believe marrow fibrosis may be caused by abnormal blood stem cells in the bone marrow. These abnormal stem cells produce mature cells that grow very quickly and take over the bone marrow, causing both fibrosis (scar tissue formation) and chronic inflammation. There is evidence of other patients who have experienced improvement in their condition (also Hyper-fibrotic in nature) one of which; a 14 year old male was described to me by my consultant. So I continue to cross my fingers, wash my hands and dodge sneezers . The hospital has asked for further marrow samples to monitor its condition.

During my Vit C binging I was drinking around 2 litres of sharp grapefruit, pineapple, tropical fruit mix (not concentrate) punnets of fresh fruits and berries. It was almost uncontrollable on top of a multi-vit tablet already providing 500mg of Vitamin C .
Side effects from too much vitamin C are very rare as the body cannot store the vitamin. Studies have shown, however, that vitamin C amounts greater than 2,000 mg/day can lead to nausea and diarrhoea although I personally did not experience any side effects apart from my teeth taking a hammering from associated elevated levels of Fructose

Vitamin C(Ascorbic acid) is a water soluble versatile vitamin. Humans cannot synthesize vitamin C due to the deficiency of a enzyme L-gulonolactone oxidase & also vitamin C is rapidly absorbed from the intestine. Due to its solubility in water it is not stored in the body to a significant extent. As a result, it is readily excreted in the urine or as its metabolite diketogulonic acid & oxalic.

So at the moment there is no answer how or why but they are working on it.

Best wishes,

Paul
christina
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Re: Hi and Hello

Post by christina » 22 Aug 2019 17:09

Hi everyone just finished reading the latest blogs which I found interesting and encouraging, Im on 15th cycle of azacitadine and touch wood most of the time doing well but I still need a blood transfusion once a fortnight which makes me feel a lot better, my hiccup of the month was vomiting for 6 hours which I blamed on the chemo but now I think I'd caught a bug as it had never happened before, trouble is we tend to blame everything on cancer when it could be just down to doing too much, age or a bug picked up. Hope everyone has a good weekend, I'm off to choir this evening, a great group from Cancer United, Out Sing Cancer warmest regards Christina
DTUB10
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Re: Hi and Hello

Post by DTUB10 » 27 Aug 2019 23:04

Well I am still here.

Great to hear about your continued recovery Paul.

I have now had a DLI and three rounds to Azacitidine, with daily Venetoclax tablet. The leukaemic cells are much reduced, but my blood counts are not recovering.

My platelets got up to 70 but have dropped back to 18, so I am going to need more blood and platelet transfusions.

I seem to have skin GVHD now, probably as a result of the DLI. It is very itchy, but on balance it is probably a good thing, as long as it doesn't get out of control.

I am still waiting for the results of my last BMB, but they are still trying hard to salvage my SCT. They may even go back to the donor for more stem cells.

Thanks for the good wishes.

I will keep you all posted.
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.
PGEX22
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Re: Hi and Hello

Post by PGEX22 » 28 Aug 2019 10:33

Hello everyone. This is my first posting. I was diagnosed with high risk MDS on the 3rd June 2019 and spent the majority of July as an inpatient in The Royal Devon and Exeter Hospital having Cycle 1 of intensive chemotherapy (clinical trial of Flag-Ida). I was expecting to go back for Cycle 2 for another month of treatment/recovery, but it appears that the Consultants now want me to go directly to a stem cell transplant at Derriford hospital in Plymouth. I’ll know more after the 2nd September when I have another appointment with my consultant at North Devon District Hospital in Barnstaple. Right now I’m feeling fine and am remaining positive. Pat
christina
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Re: Hi and Hello

Post by christina » 31 Aug 2019 16:23

Hi Pat good luck with all your treatment hope it all goes smoothly, please keep us posted as we all care for each other and are interested in how we are all getting on regards Christina
chris
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Re: Hi and Hello

Post by chris » 01 Sep 2019 20:55

3 hellos.
To Pat. Hoping everything goes well for you. A guy called John Watson had his stem cell transplant at Derriford I believe and he had a 10/10 match from his brother. Several years ago but he did well and got great care there.
To David. So sorry to hear about the GVHD Itchiness sounds very trying but hope some more donor cells can redress the balance.
To Paul. Thanks for detail on Vitamin C. Surely something to research - though the cynical old woman part of me thinks there isn't any big money to be made from vitamins so who will do the research?!

Wish you all the very best.

Take care

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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