Hi Loubella,
You say that it “… does feel as if he has been pushed down the route of SCT without alternatives being fully explained.”
Not everyone has an SCT. I didn’t, as I have a dodgy heart.
Also, my consultant told me that although remission tends to be longer with an SCT than without, the overall prognosis (to be blunt, life expectancy) is similar. You could mention the DETERMINATION clinical study to your consultant.
Hi sj2909,
Although I have no experience of any of the bispecifics that you mention, I have been reading up whilst in remission. Simply planning ahead.
Anyway, I came across this study stating that Elranatamab is significantly more effective than Teclistamab.
https://pubmed.ncbi.nlm.nih.gov/38347747/
Regards
Rabbit
Hi David,
Top priority: please contact your doctor or healthcare team.
On this forum, we are not generally medically qualified. In particular, a blood pressure of 170/90 sounds sky high.
I have experience of zoledronic acid, also known as Zometa. For me, it caused flu like symptoms (not unusual) and temporary utter exhaustion (less common but not unknown).
What follows is from reading up, not personal experience…
The pain just above your pelvis could be coming from your kidneys. Myeloma can harm kidney function. Blood tests could indicate whether this is the cause.
You could be low on electrolytes: that would be consistent with being prescribed calcium tablets (calcium is an electrolyte).
All this is guesswork, though.
Regards
Rabbit
Hi Boisvert and welcome to the forum.
Also, thank you Pedro16 for the intro 😀.
I don’t have experience of Belantamab yet. However, I have been in remission for longer than expected and am well aware that all good things must come to an end 😀. Belantamab, Bortezomib and Velcade may well be my next treatment when remission ends.
However, I do have experience of Bortezomib (= Velcade). It caused me some constipation and fatigue, but I recovered from both when treatment ended. If I say that it was manageable, that is a relative thing, but I was able to keep up working from home.
A word of warning about Bortezomib. It works using an oxidative pathway. In plainer English, food and drink full of antioxidants can stop Bortezomib from working.
Previously on this forum, I have advised against vitamin C supplements and green tea. Both in particular have lots of aantioxidants.
Having read further, my revised suggestion is both more specific and more general (yes I know that sounds contradictory 😀).
– It is best to have food and drink which contains a lot of antioxidants away from when you are having Bortezomib injections. Bortezomib anticancer action is over a couple of days at most, so when it has done its job for that cycle, antioxidants are OK.
– Food and drink containing lots of antioxidants also include fruit juice.
For more info (and where I got this from) please see this US-based myeloma forum:
https://www.smartpatients.com/conversations/contraindications-with-velcade
Regards
Rabbit
Hi Goffy,
A reduction in your light chain (lambda or kappa?) from 1600 to 85 after just one cycle is really good! It looks as though BVD is working well for you.
All the best.
Regards
Rabbit
Hi Pedro16,
I am not on Belantamab yet. However, when remission ends, it could be my next treatment, so I have been reading up on it.
You mention in another post that your platelets are at 11! Although protocols vary, there seems to be unanimity that a platelet count below 25 means that Belantamab treatment has to stop for a while.
Please take it easy and try to prevent any bleeding. If you are having turkey at Christmas, maybe hand the carving knife over to someone else!
All the best.
Rabbit
Hi Pedro16,
Thank you. I do post a lot on this forum, it is true!
I read a lot about myeloma, as a layperson but one with a lot of skin in the game and as someone with a background in science (not medicine). As a patient, I focus on treatments and anything else which can help (or hinder), rather than looking backwards into causes of myeloma.
There have always been a lot of con artists and scammers, especially when it comes to cancer treatments. Nowadays, there is also lots of online fake news.
In short, everything that I mention comes from:
– Clinical papers, presentations etc
– My own experience (always recognising that others may have different experiences)
– Advice from my consultant which may
help others. He is a leading expert, and not all us patients have access to that level of expertise.
– Occasionally info, advice etc from other forums. I try to include links to these.
In this case, you are posting on a discussion about neutrophils and dark
chocolate, and I put a link above to the source medical paper.
Regards
Rabbit
Hi ritzygirl.
You are doing really well, especially in terms of energy and exercise – 10 to 14 miles of walking is a lot!
You asked about the benefits and side effects of Lenalidomide.
You are right that people can live for some years without lenalidomide – in fact staying in remission for some years, followed by other treatments.
However, lenalidomide would change the probabilities in your favour. After all, that’s why it’s being offered to you! You could ask your consultant for the median times in remission for patients with and without lenalidomide, to quantify it.
Now on the side effects. These vary a lot. You have had thalidomide, and lenalidomide is similar. All that I can say is that you can try it. If you do get side effects that are too unpleasant to continue with, reducing the dose or stopping it are always options. Then you are no worse off.
My own experience was that I went on lenalidomide on going into remission. Meanwhile (as you emphasise exercise), I got back in the gym and rebuilt my strength and cardio fitness. My immunity wasn’t so bad because I haven’t had an SCT. I stayed on Lenalidomide for about 18 months, but I was developing diarrhoea and fatigue (for some people the side effects gets worse over time), and my platelet count went too low. The lenalidomide dose was therefore reduced for a few months. I felt much better but my platelets weren’t responding well, so it was stopped altogether. Still going strong without (still in remission, still weight training, cycling like a lunatic in the gym, and walking a lot)
Just my views and experiences, but I
hope that this helps.
Regards
Rabbit
Hi Bonzo.
Sorry that no one has replied to you until now.
Although myeloma chemotherapy can affect the feet, MGUS is not known to cause itchy feet. Neither is myeloma.
Hi Pedro, welcome to the forum.
You have had a tough time over the last 3+ years. Going through one stem cell transplant is a lot, let alone two of them.
All the best with belantamab. I have read up on it (it may well be my next treatment when remission ends). It looks pretty effective, and you are sounding very positive!
Hi c,
A new treatment has been approved by NICE in the UK today.
It is called Talquetamab. It is a bispecific antibody treatment, like Elranatamab. However, it is also different: it targets a different bit of a myeloma cell, called GPRC5D. Elranatamab targets the BCMA bit of a myeloma cell. Therefore it may well work better than Elranatamab.
Hi c,
Welcome to the forum.
I wish that I could give some comfort. I assume that the option of a clinical trial for your loved one has been investigated.
Myeloma UK has a clinical trial finder:
Also, belantamab malofodin has only been approved as a treatment in the UK in the last few months. Your loved one may have had it as part of a clinical trial already, and the approval is for it in combination with other medicines that may not work any more for your loved one.
I hate the idea of giving you false hope, but nor can I keep silent if there is even a tiny chance.
Regards
Rabbit
Hi ipg. Welcome to the forum.
I can suggest two alternative ways of improving on the diarrhoea front.
1. I gradually umproved my diet, to boost my health and prognoais. Moved towards emphasising whole foods: beans, nuts, cereals/bread, fruit and veg, some (but not a lot of) dairy and eggs. Very little junk, lots of fibre.
That improved my diarrhoea. If you are wondering why I am not mentioning meat, that’s because I have been vegetarian for decades.
2. The effects of lenalidomide can accumulate over time. About 18 months into remission, diarrhoea returned and fatigue got worse. In response, my doctor cut the dose from 5mg to 2.5mg. That dealt with it again.
Regards
Rabbit
Hi Les,
An itchy skin – including/especially an itchy scalp – is sometimes a Lenalidomide side effect.
It is not something that I experienced, but if you go to the Home page of this forum and search for “Itch”, it has been mentioned a few times.
In terms of what seems to have been effective for any itchy scalp, I have had a look to save time and effort:
– Pam said “Now taking antihistamines which have helped.”
– Shropshiremum said “I take loratadine [an antihisamine], and it definitely helps”
– Lilib said “I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names)”. You could ask you doctor or nurse?
. Maidmarion said “I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens”.
I hope that this is some help.
Regards
Rabbit
Hi and welcome to the forum.
I would suggest that it would be a good move, and that you are being very thoughtful for thinking of this.
In particular, if and when he has a stem cell transplant (as not everybody has one), he will come back from hospital highly vulnerable to infection. You reducing the risk of passing on Covid to him at a time when his own vaccine protection has gone could make a big difference.
Regards
Rabbit
