Dex – my tip is to exercise as you “come off” it ( I used a personal trainer throughout my treatment) – the weekly high/low cycle is predictable, I lowered dose to 10mg after 4 cycles to help the marriage ! Remarkably few other side effects so I thought myself lucky overall
Yes I had the melphalan which I coped with fine – it’s a harsh drug and made my hair fall out…..don’t know any alternatives but worth keeping an eye on all the blogs – SCT still regarded as gold plate treatment although increasingly being questioned by some docs in the US – I did everything I could to look at alternatives to SCT but in the end decided it was for the best ….loads on forum about this questions
On the consolidation question, I went straight onto maint. I only achieved partial remission and I did an extra 2 cycles ( 6 in total )before the SCT.
If you are planning ahead to the SCT get your dad into good shape – I worked really hard to improve my fitness/ diet and I think it helped me generally with the chemo and then with all the tests you have for the SCT and then to bounce back from the SCT quickly
Myeloma is very individual so be careful about there being any validity to these answers – how old is your Dad and has he been staged ? High risk / low risk ?
@mulberry, not sure how I got back on Revlimid ( on NHS ) as I was +100 days post SCT but maybe my history of taking Revlimid as part of induction and then switching to Dr Reddy plus being a guinea pig for the consultant to monitor ( he has a number of patients sourcing from India ) plus a sumpathetic/ interested consultant all helped
@sachbarnes when I did co-pay I only paid for the Revlimid and everything else funded by NHS so not sure how you get to £10k as Revlimid around £5ka cycle …. I think you need a helpful consultant to get this sorted and as @mulberry said attitudes between consultants vary – my fist consultant would not support Indian Lenalidomide but my second consultant did ….
Good luck with everything, 20mg of Dex I found hard to deal with ( mood swings ) so one for Dad to be aware of
I am a big fan of http://www.healthtree.org which has a wealth of good info on the Healthree University
Endorse all of the above from Mulberry
I switched from privately funded Revlimid ( about £5k per 4 week cycle ) 6 months post SCF to Dr Reddy (sourced in India by @ Nirav Sangai).
I did this with consultant support and had the drugs tested in a U.K. lab for authenticity and efficacy. Consultant was interested in results and if there was any change to my bloods with the switch … Did 7 cycles of Dr Reddy with similar ( minimal side effects )
Stop post ….My consultant has just told me I can go back on Revlimid after change in NHS policy that now permits use of Revlimid as maint drug post SCT.
Great to hear all gone well for your husband
Your question is one for the medics.
If of any help I had SCT Dec 2019 and have had both Covid jabs. My myeloma consultant wanted to check if I have the covid antibodies ( he told me the stats at the moment are that c55% of myeloma patients have the antibodies). Heaslo said they have very little data on Covid and Myeloma at the moment.
You might also like to check whether the SCT means that the Covid jabs need to be done again ( SCT is known to wipe out some of the immunisations you have had ). I am still being reimmunised as is standard afterabout 6 – 12 months post SCT
http://www.Healthtree.org ( as specialist US site for myeloma patients ) is running a Covid research study you might be interested in for this and lots of other very helpful information
COVID19/MULTIPLE MYELOMA PART 2
From April – May of 2020, 1357 patients enrolled in the COVID study. The study was an Institutional Review Board (IRB-approved) study crafted by six myeloma researchers.
You can contribute to the COVID study Part 2 to help myeloma researchers understand how COVID has changed myeloma patients’ experience over time. Having participated in part 1 of this study is not a requirement to participate in part 2. The average time to complete this study is 10-15 minutes.
JOIN THE COVID PART 2 STUDY HERE
Wil
I’m sorry I can’t help on your particular journey/ symptoms to Myeloma but I hope it will help to say I believe you are in very good hands at the Royal Marsden where I am being treated and I think there is an excellent Myeloma team there.
My family would smile at what you describe as “agitation” from Dex. It certainly had its impact on me for a while ….
I’ve recommended to others an excellent web site and educational resource for myeloma patients http://www.Healthtree.org.
Good luck with your journey
Echo Roberts comments, the advances in treatments for Myeloma have been amazing
You asked for Help and advice
1. Diet and exercise – stay in top shape
2. Record all you calls with doctors and consultants – amazing what you miss live
3. Look at Healthtree.org – healthree University has some very helpful videos to take you through this step by step
The recent announcement that Revlimid has been approved for use in the NHS ( in England ) is fantastic news for newly diagnosed patients – keep an eye on this when the time comes for them to tell you what your treatment regime will be
Everyone will tell you Myeloma is different for us all but I have found I have been able to live a near normal life ( I was diagnosed 2019 ) and I recall being very spooked when I was first told so sending you my very best wishes as you navigate this…..
I’ve had my first dose last week ( Astra Zeneca ), very straightforward and no after effects of any substance. Second dose in April.
My consultant on scheduled review said to me they have no data yet on myeloma/ Covid and said they are testing for Covid antibodies on next blood tests for patients who have had the vaccine. I’m 18 months post transplant , on Lenalidomide maint (10mg). Good luck with yours
There is some good advice on the ninth update on Scott Meechs Blog ( see link below ) about how he overcame some nasty neuropathy pain – hope this helps and dad can hang on in there
Just as an update to those following this thread that I have now sourced Dr Reddy’s lenalidomide through a source as as kindly recommended by @mulberry. I did not need any documentation and he supplied 3 months of 10mg Dr Reddy’s Lenalidomide by courier in about two weeks. I decided to get these tested to ensure they were not counterfeit and that the Lenalidomide solution was similar to Revlimid, which as others have said is not easy to get done but I did eventually find a lab who did an analysis on an Aiglent HPLC with a DAD detector calibrated using a standard solution of Revlimid. Two samples of the Dr Reddy’s were tested and both “passed”. If anyone would like further details please DM me. I will be using the 10mg daily oral pill as Maint following SCT in Dec 19 following diagnosis for MM in May 19 and 6 cycles of RVD.
For those reading this without the back thread, Revlimid is standard in the US for the treatment of MM and commonly prescribed to newly diagnosed patients as a first line therapy as part of three drug RVD. If you are lucky enough to have private medical insurance this is what you will likley be prescribed. As it is not funded by the Cancer Drug Fund in England for most patients it is not available on the NHS (unless on a trial) . It costs approx £60k per annum to self fund hence why sourcing from India (approx £2k per annum ) is worth investigating. Its obviously a very difficult subject for NHS doctors and indeed MyelomaUK but this should not stop more discussion especially now that Scotland have started funding Revlimid for some patients and patent disputes between Celgene and others have been settled albeit with some time still to elapse.
@mulberry would it be possible to see the Gas spectometry reults you mentioned – I did try to PM you , now got my supply from Nirav so keen to get onto these checks.
my email address is stewartalastair@btinternet.com / 07768 744865 if its possible to contcat me ASAP . many thanks
Alastair Stewart
thanks you @mulberry and @sueharley for your recent posts which are very helpful given the recent NICE decision not to approve Revlimid\ Lenalidomide in the NHS.
My focus has been on how to source Revlimid/ lenalidomide from India so for those who are looking at this I can offer up the following comments.
I saw a new NHS consultant (myeloma specialist) who aware that I had been on Revlimid maint ( self pay ) advised Revlimid not available on the NHS and even if the recent decision by NICE was changed I was unlikely to qualify to get it.
He told me my options were a private pay arrangement with the hospital (£4.9k per monthly cycle of Revlimid ) and then volunteered that “some” of his patients sourced it from India but this was not something he could advise on – he volunteered the information about India before I could ask him which I thought was interesting ( perhaps a reaction to the announcement from NICE a few days before I saw him together with growing evidence about benefits of Revlimid)
I followed the suggestion of @mulberry and contacted Nirav Sangoi nirav.dialhealth@gmail.com who has sourced a supply for me of Dr Reddy’s lenalidomide. Before I take it I am planning to have a gas spectometry test done to check authenticity but as @mulbery has pointed out this is not easily done.
I’m also interested in finding out more about Lenalidomide supplied by Natco and if there any differences with Dr Reddy’s ( Both are large well established Indian pharma companies who have recently had patent settlements with Celgene)
I will update as things develop and again thanks to @mulberry @sueharley for showing the way….
@mulberry, very helpful and thank you very much for all the detailed explanation and background
@mulberry are you able to share details of where you did the gas spectrometry tests. I’ve ordered via Nirav who has been very helpful but want to test against the Revlimid I’ve been taking ( the authorised Celgene purchased privately in U.K. )
On the test you did was this manufactured by Natco or Dr Rennys which appear the two most common. Nirav says all his U.K. clients are using Dr Renny’s
As an aside Dr Renny’s just settled there patent dispute with Celgene ( details on the internet for those interested ) which should open up supply in 2022.
Many thanks
Jane , many thanks for follow up, we’ve made contact and he’s been very helpful . I’m still trying to establish if this is Revlimid manufactured under license from Celgene or just generic Revlimid – very helpful you’ve done some tests – does he supply from same manufacturer each time ? Thanks
Does anyone have contact details for Nirav as getting bounce back from the email address on this forum – thanks
