[docmikeParticipant]

dear all,
I am still on isatuximab and pomalidamide and am now into my third year of treatment (paraprotein Less than one ) last year reduced steriods .This year stopped altogether (consultant agrees no role in maintenance phase). lost alot of weight which includes muscle losss, still got cramps /tremor with pomalidamide .
so clearly my myeloma is more sensitive to isatuximab than melphelan
isatuximab is key drug in the radar trial which i would highly recommmend for newly diagnosed myeloma
best wishes michael ashton

[docmikeParticipant]

This was AZ7442 ? in the Provent trial
Still waiting to hear about my fifth injection ?
Antivirals take three days to arrive ?? the virus multiplys exponentially meanwhile; not best clinical practice .
still uncertainty about molnupiravir paxlovid seems safer and more efficacious ??
bmj references can be supplied
as throughout the epidemic weve been cast adrift to look after our risk of contracting covid
hopefully the haematologists will knowabout and sign the petition
Best wishes
Michael

[docmikeParticipant]

Hi there
Youve been given a variety of advice which reflects (as mulberry said) the extreme range of experience ,which in itself illustrates that myeloma is a very heterogenous disease ie every case is different . However in the present situation particularly in the uk ,generalisations are the norm . You ve already experienced this having had vtd and had neuropathy a much more significant and well known side effect than temporary loss of hair .
iF you have asct, which is consolidation treatment to hopefully remove as many remainng myeloma cells as possible; you would be eligible for lenalidamide maintenance afterwards which was proved to be of benefit in uk trial myeloma X! = longer disease free survival . a major step forward in the treament of myeloma in the uk ( Albeit 5 years +after the usa /and europe )
As always in myeloma its risks v benefits . however thats what s the forum should be all about in talking to people who had the same decisions to make .
best wishes Michael

[docmikeParticipant]

Dear Susie ,
After my first infusion I had no side effects from the iv therapy .
Like me when I relapse hopefully in a few years time, both you and I will have to look at the clinical trial finder on myeloma uk to find out where suitable tx is available elsewhere . Cart t cell etc ,bite , bcma targeted therapy .
I have always known that sheffield does not partake in every trial and that i would eventaully have to travel to hopefully be accepted on a suitable trial elsewhere . I Found out about the early access scheme from myeloma uk not my consultant . (There are trials for multi relapsed patients )
Bets wishes Michael

[docmikeParticipant]

Dear all ,
Ive had my fourth jab (2nd Pfizer ) but note that the pfizer antiviral drug paxlovid has been approved and maybe available for us ??? claimed to be 90% effective given prophylactically . Ideally it would be best if we had a 48 hour supply to start asap (double loading dose ? a personal medical opinion based on experience )
Antivirals will give us the best protection in the future and I think reduce?abolish hospital admissions for the general population
best wishes Michael

• This reply was modified 2 years, 10 months ago by  docmike.

[docmikeParticipant]

Dear Susie .
I started on isatuximab, poma and dex june 2020 under the early accces to medicine scheme and was the first person in sheffield to receive this regime . It is my fourth tx but my first proper triple regime.
I am still in remission at less than 1gm/l and am now in the maintenance phase and hence phasing out the dex hallelujah!!! (better response to my fourth covid jab and possibly makes the pomalidamide more effective ???? and thursdays are much better (TX on Tuesday))
The infusion only takes 90 minutes except in the first few infusions when you do nreed the dex ,antihistamine and paracetamol before each infusion. I had transient nasal congestion and chest felt a ittle tight before the dex kicked in and I felt suddenly optimistic which was weird I know (beginning of a steroid high perhaps??)
I have my usual muscle cramps but I had that with thalidomide and lenalidomide .
So I hope you find that reassuring .
I am a patient representaive on the radar trial for newly diagnosed myeloma patients which involves isatuximab big time and does not involve thalidomide !!
Best wishes Michael

[docmikeParticipant]

dear all
I ALSO HAVE RECEIVED THE PCR KIT TO BE SENT ASAP WITH SYMPTOMS OR POSITIVE LATERAL FLOW . IT IS THE FIRST STEP IN EARLY ACCESS TO ADDITONAL TREATMENTS WHICH IS CONTROLLED BY A CLINICIAN WHO WILL CONTACT YOU FROM 119?ETC. THE LOGISTICS OF THIS SOUND GOOD TO ME .
LIKEWISE I RECEIVED A LETTER FROM A LOCAL HAEMATOLOGIST (NOT MY MYELOMA SPECIALIST )WHICH CAN BE USED TO OBTAIN MY 4TH DOSE OF ANTI COVID VACCINE / OUR TRUE BOOSTER DOSE BUT ONLY AFTER 3 MONTHS FROM MY THIRD DOSE . SO AFTER 9.1.22 I HOPEFULLY WILL HAVE INCREASING PROTECTION
MICHAEL

[docmikeParticipant]

Molunipravir

• This reply was modified 3 years, 1 month ago by  docmike.
• This reply was modified 3 years, 1 month ago by  docmike.

[docmikeParticipant]

hi ss, azd4772
Astra zeneca produce monoclonal antibodies against covid 19 which are similar but not the same as the antibodies that you hopefully produce after vaccination or after having covid.
A combination of two long acting (a year?)antibodies which are given into the buttock ?IM ,can passively increase your antibody level ( THE more the merrier)
THE Provent trial? showed it prevents many hospital admissions ,if give to the immune vulnerable ,in this case renal dialysis patients . It is called Ronapreve,or regen co and is likely to be expensive ,so will have restrictions
It also available now in hospital to acute covid patients with low antibody levels; after encoraging results in the Recovery trial
Molnapravir ,if as good as promised, is an antiviral tablet that ideally could be given at hone asap after a positive pcr and stop the infection multiplying .
Idealy the vulnerable /us need two days supply on the ready at home and get the the rest else where later but organising that will need a lot of effort keep watching this space
Best wishes Michael keeping asking if not sure

[docmikeParticipant]

Dear ALL ,
I ve read all your threads which explains the problems of getting revaccinated after asct .But it has not been easy for all patients with myeloma to receive advice from their haematologists re when, how to fit vaccination in with treatment schedule ( I have been lucky enough to arrange steroid holidays for my last 2 jabs) etc .
Like Sachbarnes I found Anthony Nolan website helpful and indeed they had reminded both gps and haematologists about a letter in september from nhs ? re the need for arrranging a third vaccination (not a booster and that the 3rd could be given 8 weeks after the second) as part our specific vaccination programme . I ,at last , recieved two letters from the haematology dept (Not my haematologist ) advising where to get vaccinated with the letter itself the mandate for the jab itself . This was just as well .as the later gps invitation lead to a blank point refusal at a local gp flu/covid site ..”its not six months since your second jab” ;thus I went to another site where they recocgnised the letter as a need for a THIRD vaccination .
So like you all, it felt as though nobody was in charge of our care re covid protection. As an ex clinician i feel the haematologists should take on all the complications of the therapy that they arrange for their patients in the first place .( gps fight shy even before covid , 111 and A&E are far from ideal they have enough problems of their own . ) They the haematologists should have been more proactive .
However having had two jabs and being part of the Rudy study I know that my antibody level is regarded as PROBABLY adequate ( at that time) and t cell response probably inadequate .BUT although it could be worse , I do not feel protected to the maximum . Hence the arrival of azd7442 ,which enables passive protection by providing two long acting antibodies given by im injection, is of significance to us all and especially after asct .( the more antibodies you have the better full stop.)
On my other thread re the radar trial; I have pointed out to the trial clinicians that this possible protection against covid may be available after asct, wth a view to adding this option in the protocol .
Best Wishes Michael

[docmikeParticipant]

Sorry some bad errors ?predictive text

[docmikeParticipant]

Hi
I have been on the above regime for a year now . It is my forth treatment but the first time I have proper tripe therapy .I was also lucky to receive it during a the short window of opportunity under the early access to medicine schemes(EaMS)
I had good response 12 down to 1.5 but I am now in the maintenance phase as it has kept at this level for the last six months
As always the steroids are the pain but you need them before the isatuximab every two weeks and although I have reduced the dose to twenty mg the day of lethargy persist.
I have had cramps inhands with thalidomide,lenalidamide and now with pomalidamide togethr with post excuse cramps in thighs
The first infusion took over three hours and I had minor respiratory symptoms before the steroid kicked in with a the last very very early mental high which was not repeated with subsequent doses . Indeed the highs with steroids have finished but not the lows but you probably know things already
The nurses tell me the infusion rate has now been speeded up after the first dose so i weigh 95kg and my aboutnfusion takes about 80 mins ; if you weigh less the infusion should take less time
I also regard myself as lucky to receive tx in O2 ward Sheffield which was still functioning during the covid crisis .
I hope that reassures to some extent .please ask further questions
Best wishes Michael Ashton

[docmikeParticipant]

Dear Clare ,
I am sure I speak for many on this forum . You and Lee are in our thoughts .
michael ashton

[docmikeParticipant]

Before I had my vaccination I had blood sample sent to the Rudy study as a baseline so I assume I will send another one after my second dose to see if there is an antibody response .
I still think azd 4772 passive antibodies are our best hope .
michael

[docmikeParticipant]

Hello Clare ,
First of all I hope your husband ,LEE is improving despite the difficult circumstances .
Secondly I would like to apologise for not responding to your post earlier ; this is because I am also a patient at Sheffield rhs .
I am a retired Consultant Physician/Gastroenterologist(Chesterfield but trained at the Hallamshire ) and have had myeloma for over 12 years (6years smouldering and active myeloma since april 2015 ). I ve had two ascts and in June this year started on my fourth treatment of isatuximab pomalidamide and 40mg dexamethasone under the early acccess scheme which is fortunately still available on 02 ward ( bearing in mind a lot of clinical trials elsewhere have been suspended ).
Anemia was the reason for starting my treatment so I consider myself very very fortunate not to have bone pain ( all mris negative so far touch wood) enough about me .
Andrea Foster is the macmillan nurse who supervises outpatients on A floor clinic but I would guess your husband has had telephone outpatient consultations ?
However with no disrespect youve discovered this forum which is the best source of the imformation that you were looking for and more importantly ,despite being medically trained like me, you and especially your husband have felt nobody really understands and you feel alone . Well I am sure I speak for many on this forum who felt the very same but found comfort on this forum which is why it exists .
Myeloma is very heterogenous entity and every case is different however subtle that difference . in the last 12 years many treatments have been developed and the outlook has improved year on year . so it a matter of being exposed to the drugs which is best for your myeloma . In my case ive just got of the last chance saloon I hope , but this is the first time I have had triple therapy . Your husband has started on a triple regime .and will be given maintenance after asct ( I think) which is of known benefit.
Of course the covid crisis/infection control in hospitals/ vaccination response are ongoing big issues but infection control was an issue before covid, given the emergence of resistant bacteria and lack of new blockbuster anti biotics . so shielding might be required long term
best wishes michael

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