Hi deeceebee123,
I have MM and had two heart issues. One of those issues was afib: in my case, I had an operation which cured me of afib. Even so, due to the other heart condition, my cardiologist, haemotologist and I discussed the situation and decided that it would be best for me not to have a stem cell transplant.
A stem cell transplant can be grueling, and a dodgy heart is not a good starting point.
In addition, chemo treatments have been improving: the case for MM patients having a transplant is weakening as a result.
Lastly, I came across this study of MM patients with afib having transplants. The hard statistics from this is that it is significantly higher risk for afib patients than otgers: https://pmc.ncbi.nlm.nih.gov/articles/PMC10198774/
Please, though, don’t lose heart (pardon the pun!). As a small example, I am still going strong, 2 years and 3 months after diagnosis, in remission since June 2023. Went to the gym this afternoon, and off on holiday next week 😀.
Regards
Rabbit
Hi Daz,
I am on a few of these forums, one of which is US based: https://www.smartpatients.com/conversations
There are posts there about patients’ experiences with Isatuximab = Sarclisa. Please see:
https://www.smartpatients.com/search?q=ISATUXIMAB
https://www.smartpatients.com/search?q=Sarclisa
All the best with Isatuximab. Please let us know how you get on with it.
Regards
Rabbit
Hi Rebecca,
I have no experience of hip replacements, but my immune system is weak (specifically low platelets and neutrophils).
For WBC (including neutrophils) you can be prescribed filgrastim injections (which can be done at home).
For platelets, an infusion of blood platelets from a blood donor can be done. That stop the risk of excessive bleeding (unfortunately the extra platelets don’t stay in one’s body for long).
Regards
Rabbit
PS I did see a study that eating dark chocolate boosts neutrophil counts.
Hi Tony642,
I am interested in signing up as a peer buddy. I haven’t seen a way to do so, so I have filled in the peer referral form but explained what I am trying to do. Will that do the job?
Regards
Rabbit
Hi Eltry,
Whilst I would hesitate to describe your refusal to have treatment as ‘foolhardy’, I didn’t seriously consider that choice for a moment.
You mention that you have bone lesions. They are being caused by myeloma cells eroding the calcium in your bones. This would be continuing at this moment, and at some point the erosion will reach the point when bone pain will start.
The calcium in the blood is a lot for your kidneys to deal with: at some point your kidneys may fail. Treatment can prevent or reverse this.
Meanwhile the myeloma cells are reproducing. As the myeloma progresses from Stage 1 to 2 to 3 (there is no stage 4), your prognosis gets worse.
As for chemo side effects, they are generally an issue, yes, but some patients are affected more than others.
Personally, I want to be around for my family for as long as I can. As for side effects, they have not always been easy, but my chemo was recently tweaked to deal with fatigue and brain fog that had been problematic lately. There are lots of treatments out there: if the side effects of one are severe, you can be switched to another treatment.
I am physically fit too, and routinely walk long distances, cycle intensely in the gym and lift weights.
Regards
Rabbit
Hi Jon,
The home page on this forum has a search function: mentions of the RADAR trial are here.
https://forum.myeloma.org.uk/forums/search/Radar/
Regards
Rabbit
PS I am not myself on the RADAR trial.
Hi Jon,
You say that you have only just been diagnosed but the decision meeting is on Wednesday: unless treatment is unusually urgent, it sounds as though you are being bounced into a decision very quickly.
Abbreviations: Dara VTD = Daratumumab, Velcade, Thalidomide and Dexamethasone.
DRD = Daratumumab, Revlimid and Dexamethasone.
As you can see, the initial phase is similar and many are given Revlimid instead of Thalidomide, which would make them even more similar.
There are plenty of posts here about the stem cell transplant process. In outline: your stem cells are collected from your blood in a process call apheresis and cleaned up. You go into hospital, are given a massive chemo dose which destroys nearly all the myeloma cells and wipes out your immune system, the cleaned up stem cells are then put back into you.
Recovering from the stem cell transplant takes some time, maybe 3 weeks in hospital followed by further recovery at home. It can be – but is not always – tough going. I didn’t have that as it would have put further strain on my dodgy heart. I had Dara VRD: now been in remission for 19 months.
Regards
Rabbit
Hi Jon,
Just to say that many people on this forum have had diagnoses like yours. We have been through the shock that you are probably feeling now. If we can provide information based on our experiences and familiarity with jargon and treatments, it may help you with your decision making.
Regards
Rabbit
Hi,
I have been on lenalidomide maintenance for 18 months so far.
I have taken it from the start in the mornings. No particular reason, except that if there was some delay (e.g. vomiting when I had gastroenteritis), there was still scope to take it in the afternoon.
Anyway, I don’t think that it has caused me any sleeping issues.
Regards
Rabbit
Hi Rick,
With only slightly elevated IgM levels, which can have several other causes, and no other abnormal results, it seems very unlikely that you have myeloma.
Regards
Rabbit
Hi Rick,
“Bence Jones protein
Tests can detect paraproteins in the blood and urine if you have myeloma. One part of the paraprotein is called the light chain. This is also known as the Bence Jones protein. The body gets rid of the light chain in the urine. Urine tests are a way of detecting these light chains to diagnose and monitor myeloma.”
https://www.cancerresearchuk.org/about-cancer/myeloma/getting-diagnosed/tests-myeloma
You didn’t have any Bence Jones proteins.
Regards
Rabbit
Hi Rick,
I’m sorry to be one of those people who join a message board asking for guidance on a medical issue when its entirely reasonable for you guys to say “ask the doctor!…”
Don’t worry, Rick. You are among friends here. The average GP sees myeloma cases once or twice in a working lifetime, and some of us have experience of them not having a clue, misdiagnosing etc.
There is an obvious downside that whilst we on this forum know a bit about myeloma from experience, we won’t generally know much about other conditions.
There is a clue in your platelet count. The normal range is 150 to 450, so yours are not just erratic: they are on the low side. That can have a range of causes, from an infection, to a vitamin B12 deficiency, to overdoing alcohol, to other possible diagnoses.
https://northeast.devonformularyguidance.nhs.uk/referral-guidance/eastern-locality/haematology/thrombocytopenia-low-platelets
Low platelets can cause dark patches on the skin, (although this happens more often when the platelet count is much lower.
On the high IgM: this is outside the normal range, but not sky high. Sky high readings – in the hundreds or thousands – are more typical with myeloma https://pmc.ncbi.nlm.nih.gov/articles/PMC3736855/
Again, an infection can cause such ‘slightly high’ readings.
“He has no paraprotein so I am not concerned about the raised IgM (likely inflammtory), I think it sounds likley post viral”
The lack of proteins is a strong indicator that you do not have myeloma. The haematologist is pretty definitive on this (although, for full disclosure, a few people have myeloma without paraproteins).
In short, I think that the tests already done are sufficient.
Regards
Rabbit
Caveat: I am not a haematologist, but a patient (with very low platelets)
Hi emmasue123,
I am in remission and have been travelling a lot since going into remission, but I haven’t had a transplant.
Start Locally?
I live in Southern England, so my first bit of travelling was around Scotland. Still able to use the NHS, less need for travel insurance (see below), no language barrier. It also gave me more confidence as a traveller with MM (albeit in remission). Fatigue was a real problem at this stage, but a city break using a tour bus doesn’t require being on one’s feet for long.
Travel Insurance
This is a must, as always outside the UK, but the premium will be high for your husband. I suggest some shopping around. Don’t forget the free Global Health Insurance Card for emergency medical treatment in the EU and one or two other territories.
Medicines etc
There are countries (such as UAE) where bringing in medicines comes with rules. Please check first before bringing in chemo.
Elsewhere on this forum I have suggested CBD oil to help with lack of sleep. It is, however, illegal to bring into many countries (Sweden and Morocco come to mind) so again please check first.
Company
If your husband has any plans to go solo, please discourage him. Fatigue and infection are much easier to deal with when you have a companion.
My Experiences
My fatigue has gradually reduced over time. In the earliest trips, fatigue held me back but I planned accordingly. It is still there in a mild form now, after 18 months of remission, but I just allow for a bit of time to rest, whether on a beach, sitting and watching the world go by, or going to a theatre or cinema (maybe wearing a mask).
In that time I have been to: Scotland, Denmark/Sweden, Morocco, Cyprus, Southern Spain, Portugal and New York.
Yes, I have spent a bit, but I have decided to start using my savings/pension pots rather than just look at them (I am aware, though, that I am financially fortunate).
Food Hygiene and Healthcare
Both of these vary a lot around the world. Each time, before booking, I knew or checked that there were good hospitals where I was going (if nothing else I had peace of mind). With hindsight, I should have checked likewise on food hygiene: coming back from Morocco with gastroenteritis was… not pleasant.
Regards
Rabbit
Hi Kar,
There is a case for not having a stem cell transplant.
You may want to see this video:
Maintenance chemo is an alternative or extra way to keep your husband’s remission going for as long as possible. There are different chemo drugs that could be used (such as lenalidomide instead of thalidomide) that may have fewer side effects for him.
Please let us know what you think.
Regards
Rabbit
Hi jbal,
I remembered hearing about other cases like this.
Smartpatients.com is another forum, based in the US, that has an area for MM patients and carers.
Switches between kappa and lambda light chain MM was mentioned here:
https://www.smartpatients.com/conversations/strange-development-lambda-ch#post-1416562
Regards
Rabbit
