[docmikeParticipant]

Dear All,
This is very good news but far too late for me but just to put thing s in perspective
I first needed treatment in 2015 and took part in the myeloma X1 trial which was the trial which looked at lenalidamide maintenance after asct ( I came off trial before asct ) By 2016 they were able to publish the data showing maintenance was effective in reducing relapse and indeed by then maintenance therapy was routine elsewhere in the major centres in europe and us . So it has taken four years to get better treatment funded !! the other major finding was that KRD was superior to CTD which remained the standard therapy until recently VTD was not specifically tested but is not used in europe or us
So progress but a hard slog for myeloma uk trying to get NICE to reverse its decisions i suspect .
Michael

• This reply was modified 3 years, 3 months ago by  docmike.

[docmikeParticipant]

Dear Mrsi ,
First of all I am pleased you appear to have avoided severe disease which may be due to your impaired immune system ( also off steroids?) but at that same time may explain difficulty in clearing the virus .
Hope it clears soon because otherwise your post is encouraging to most of us who anticipate the worst in this situation.
Best Wishes
Michael

[docmikeParticipant]

I had my az vaccine this afternoon ,watch this space
Michael

[docmikeParticipant]

Dear All,
Further to the arrival of the oxford vaccine ,it seems we will be offered the vaccine in the 4th gruop of the first phase of mass vaccination; and the advice elsewhere on this website (and that of the American IMF) seems to be to take up the offer even though there must be doubt of its effectiveness in myeloma and those on medications (eg dexamethasone )for the latter .
IF you belong the RUDY study (post elswhere on this forum) about 500 of you will know of the Prepare study in which one part will look to address the immune response to vaccine in blood cancers and if modifying therapy can improve the response. The trial is being set up for next year but the first flyer advert outlines the questions being asked .
BUT I still think AZD7442 hopefully wil be shown to be effective and is the best hope of providing immunity to covid 19 in myeloma and in other immundeficient conditions .
keep safer in tier 4
michael

[docmikeParticipant]

Dear Myeloma20 ,
carpal tunnel sydrome =compression of the median nerve in the wrist
PAIN at night relieved by hanging hand over bed or shaking hand
numbness in thumb and index finger and half of middle finger (not just tips )
confirmed by nerve conduction studies
google ;carpal tunnel syndrome ;will confirm this
hope this helps
best wishes michael

[docmikeParticipant]

Dear Rachel,
You ve done very well to point out Astra Zenecas AZD74442 (now in phase 3 clinical trial ) long acting antibodies against covid 19 . This indeed is highly relevant to the topic of vaccines and their effectiveness in myeloma ( and indeed in many other heamatological and non haematological conditions; literally thousands of patients have an interest in this topic )
This because on theoretical grounds, an impaired immmune system makes it high likely that there wil be a corresponding impaired response to a vaccine ( live friendly viruses are used treat myeloma Reolysin??? btw ). But there will great variation from patient to patient in terms of degree of impairment and which part of the complex immune system is particularly impaired or intact. After an ASCT the new immune system has lost its response to all previous vaccinations and previous infections .
In my own case after three different regimes and two ascts , I started on isatuximab ,pomalidamide and dexamethasone (40mg weekly ) in June under the EAMS scheme, which I learnt about last november and succesfully applied for before the widow of opportunity was closed by NICE . Likewise I think myself relatively lucky to be treated in sheffield where the haematology day ward was still open .
This is the first time I have been treated with a proper triple regime (I never regraded CTD as a proper triple regime ) and I have my best response so far ;indeed out of the last chance saloon . The problem is 40mg of dex weekly makes vaccination responses impossible ?? and i think you need to stop for months before this impairment is corrected . Bearing in mind this sterioid?dosage is universal in most anti myeloma regimes I am certainly not alone.
I ve had regular flu jabs on the basis it will do no harm but i dont think it is protective and indeed I had flu in september 2019.
So passive immunisation for a year with a monoclonal anti covid antibody cocktail is very relevant to us; given prophylactically (if it proven to work in the present trials)
Congratulations once again in keeping your eyes open for a highly relevant possible treatment option. I have been searching the medical literature on the internet for both direct antivirals that work against covid and information about the effectiveness of the vaccines in our clinical stuation ( Not much guidance from the heamatologists??) . Just to explain I am retired consultant physician/gastroenterologist who has been on this forum over ten years but have not posted recently but I am still a patient and respresent their views working with myeloma uk
best wishes michael

[docmikeParticipant]

Dear Johnny
I would be careful about running marathons soon after ascts.I had significant cardiac arrhythmia induced by coffee after my first asct and an echocardiogram showed left ventricular dysfunction with reduced ejection fraction. it recovered after three months . I drank decaff coffee for two months after my second transplant after another abnormal ecg within days of melphalan.(normal echo before second transplant)
michael ashton (retired consultant physician )

[docmikeParticipant]

dear Ian
You have nothing to loose and everything to gain if cucurmin works against your myeloma .
michael

[docmikeParticipant]

Hi Helen,
I am not sure if you have tried curcumin/turmeric ? I can give you details .
I despair that you could not access carfilzomib or ixazomib in the past . and hence yes a retired nhs consultant has to suggest an alternative medicine with anecdotal evidence based on one case report in the bmj .
hope this helps
I feel for you
michael

[docmikeParticipant]

I am pleased for you Rebecca. I was hoping for such a remission but alas(10months after second sct) the paraprotein is detectable at 1.1gm/l ;consultant say undetectable is less than 1gm/l ;undetectable is not zero?????so may be a blip /try not to worry . had planned a trip to Australia in January for a month!!!

no triple therapy followed by maintenance in the uk for my situation thanks to nice and nhs England
michael

[docmikeParticipant]

Dear ALL
I have received a reply from Rosemary Finley ,Chief exec of myeloma uk regarding myeloma tracker and even more important issues .In her long letter she confirmed IRD is the first novel triplet available for patients at THIRD or FOURTH line funded by cancer drug fund (RUN BY NHS ENGLAND).good news Susie >! currently daratumumab,bortezomib and dexamethasone (DVD)is under appraisal by nice with second meeting soon . BUT she shares our frustration that the effective treatments are licensed but not routinely available . (But its going to be a long battle without fundamental changes in nice and nhs england not least with the present adverse financial situation..my words reading between the lines )
myeloma tracker or its rebranded version should be available now restructuring of staff has taken place
Helen,Interferon was used originally in initial studies on stem cell transplants 15+years ago ? in mm and also in hairy cell leukemia and i think in treating kidney tumours ??? it has significant side effects .. i know but that’s a long story.
Lets hope dvd is allowed to be given at any stage of relapse as well as primary therapy . lenalidamide is likely to granted for maintenance intially after successful first induction but least the concept of maintenance therapy is recognised .
Just hope all goes well for you all in the meantime .
Michael

[docmikeParticipant]

Dear Mira
I am a retired consultant physician and had smouldering myeloma for 6 years but am now in remission SCR after second stem cell transplant . as it happens i am on curcumin because NICE does not fund maintenance therapy . In retrospect had I known ten years ago ,what I know now, I would probably have taken curcumin then .Again as there was no alternative and no side effects of note . But a trip to Harley street will be very expensive and curcumin is available online and in some shops . This forum contains the information if you can search past discussions and reflects the very same questions that you ask ,as everyone joining asks the same questions. There is more experience here ,although hidden, than any doctor in Harley street .
michael
en

[docmikeParticipant]

Dear All,
Ive managed to log in again …yes new website progress or dampened down the fire by control?
I am in a very good position at present .I relapsed after my first sct and was put on rd but was blocked by nhs england from free access to i to make ird .However after my second sct in January I have achieved a significant complete response …….minimal residual status ? not done in Sheffield ( if i had had ird i estimate i would about 20 % more chance of achieving mrd -ve status based on my reading of the scientific literature none of which comes from the uk . ….. just to remind you I am a retired consultant physician who has been on this site 10 years and until a few months ago received myeloma tracker from this website and which produced a list of all scientific publications on myeloma …most of which confirmed how far we are behind most of the first world and indeed second world .. triple therapy is now standard elsewhere but does NOT INCLUDE EITHER THALIDOMIDE OR CYCLOPHOSPHAMIDE which have not been mentioned in treatment regimes for about ten years …in the usa thalidomide is regarded as the LEAST EFFECTIVE AND MOST TOXIC agent ..cyclophosphamide is history .
However I am pleased to see Susie and Jan on IRD and hope you both do well . yes the dexamethasone is an absolute pain ( yes ive been there) but we are stuck with that medication in most effective regimes for the foreseeable future .
I agree this website has lost some of its effectiveness but it is retrievable . Health unlocked (nhs sponsorhip )and facebook will never get down to nitty gritty unpleasant truths which are required to make a forum effctive.
So the truth is the uk is at least 5 years behind in access to the best treatment for myeloma because of nice and nhs england ,except where some brave heamotologists ignore the threats .VRD should be the first minimum line treatment for all until tailored therapy (genetic studies to detemine therapy)arrives . daratumumab triple regime for first relapse after first sct and so forth . Myeloma uk should be fighting for this and all haemotologists should know this but…….
I am going to write to see if i can get myeloma tracker back so i can keep this forum informed .
Best wishes michael

[docmikeParticipant]

Hi Susie
You are right to say that the forum is less well used these days .And hopefully this is due to more people being in remission, when you try to put myeloma on the back burner . However given that treatment in the uk (outside trials) is 5 years behind the us and probably most of europe ,unfortunately earlier relapse is more likely and the treatment options then are limited by NIce and Nhs england and thats why this forum becomes important again . If myeloma uk wants to make myeloma history it has to stop the rationing and distortion of clinical trial evidence by nice and nhs england so we get access to the drugs ( triple or quadruple therapy combinations) which give us longer remissions with LESS SIDE EFFECTS; thus myeloma becomes a chronic disease a step forward towards a cure .
Despite being a retired doctor i know a lot about patients forums and their unique value (how? that a different story). This is the best forum but sometimes you need to be contraversial to encourage debate when the truth, however unpleasant becomes evident ,and then you can move forward.
Michael

[docmikeParticipant]

Hi Linda,
Welcome .My name is michael ( was originally on the forum as Docmike).I am retired consultant physician/gastroenterologist and as it happens i am just recovering from my second stem cell transplant and my paraprotein is zero for the first time in ten years.
But i had smouldering myeloma for six years and help set up the specific thread for smoulderers/mgus on this discussion forum in which I have written extensively om my experience not least reviewing the medical literature on smouldering myeloma .The cutting edge treatments/strategys are reviewed and are available in the usa albeit in trials, with europe slightly behind but the uk is 5 years behind due to NICE rationing therapy . In that regard there is a trend to consider treating high risk smoulderers earlier in trials .One of the criteria of high risk is a free light chain ratio over a hundred ;if your lambda is 1866 and your kappa is less than 18 you would fit that criteria .I hope you have had a MRI in any case?
I apologise if I have increased your fears but I know those fears well but you ve joined this forum to learn more because your fears feed on uncertainty . There is a lot more to discuss but thats enough at one sitting .But ask away .
Best wishes Michael

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