Recently diagnosed, about to start treatment

Hi Geedubya.

Welcome to the forum.

Chemo side effects vary enormously from one person to another. These were my experiences with similar chemo (Daratumumab instead of Isatuximab: the two are similar)...

I started being a gym regular way back in 2004, a mix of cardio and resistance training, and a few years later I also took up running. I was diagnosed at the end of 2022 and started treatment in early 2023.

I kept up the exercise... for a week. Then the fatigue hit, and I struggled to do more than a minimal amount of walking. I kept my gym membership out of principle, but didn't actually use it for 6 months, when I went into remission.

I had lost a lot of weight, much of it muscle. It took a lot of effort to rebuild myself, but after a few months I was back to doing the weights and gym cardio that I was doing before. The running has only really restarted in recent months, but that's less indicative I think.

By the way, I am still in remission: did a massive intense cycling session yesterday, lots of walking and a weightlifting session today.

All the best. Please keep us informed about how you get on, and we'll be happy to answer any questions.

Hi. Geedubya   Welcome to the forum.    I am. Vespa.  A. K. A. Kevin.  Male 69. In remission with. M. M.  Had stem cell transplant about 2.5 years ago. Not on any treatments due to skin reaction to Lenolidamide.      Like Chicken2  my treatment plan was with Daratumbaba and dexamethasone.     The side effects of the treatment I still live with.    Neuropathy and fatigue breathlessness.   But happy to still be here       Life is good.    I am not sure if you are heading towards a stem cell transplant.      The recovery from that is tough   And low immune system is something to be aware of     I got my news on my 66 Th birthday and my retirement day.        You cut your cloth to suit.     We ( wife and I ) plan to visit family in Australia next year probably twice.   I missed out on two trips due to treatments.        A positive mental attitude helps also and support of family and friends.    Do NOT let this blood cancer define you       Always interested what people did before retirement or getting too ill to work.  I worked in bakery products development.  It took me around the world so  lots of great memories.     Best wishes keep in touch on here.   Kevin 

Thanks, looks like I might at least be able to save a bit of cash by suspending my gym membership for a bit!  Encouraging though that you have been able to get back to it, as it's a big part of my daily routine and important in terms of keeping me generally fit and healthy, which is going to be vital going forward.

I'll see how I get on once treatment has started.

Thanks, I guess I'll just have to see how the side effects go.  Since I'm feeling pretty much fine at the moment it seems a bit weird to have to go through tough treatment, but that's just how it is.

No mention of stem cell treatment so far, but I'm due to see my consultant again before treatment starts.

I worked as a civil servant for over 30 years before taking early retirement, and I've had a pretty nice life for the last 15 years or so.  I'm well aware that there are plenty of people who would find living with this condition a lot tougher than me.

Hi

I started Isa-VRD in mid-January this year. I don’t want to comment on the side effects I experienced as it really is different for each individual, even if there are some in common and, as you will be aware, it is a relatively new treatment so there is not yet enough data to list all side effects. 

What I want to do, however, is share how successful this treatment has been for me; better even than I’d hoped. 

My protocol was for 6 months of weekly chemo plus various supporting drugs.  After only 4.5 months my paraproteins were, “too small to quantify” and my treatments were changed to fortnightly.  Blood samples taken 10 days ago show that my serum free light chains have normalised and, so far, my liver and kidneys have not sustained any damage.  I wasn’t offered Stem Cell Transplant because I’m over 70 (turned 76 earlier this month).  

Velcade was discontinued after 2-3 months owing to severe muscle pain.  In July Lenalidomide was discontinued because I am doing so well.  This means that I’m experiencing less side effects and my life is good.  Again this may not be the same for everyone, especially as my Myeloma was caught very early but, I know of one other person who is experiencing very similar improvement with this treatment.

I am pleased I was offered Isa-VRD and whilst it has been challenging for me, it has been worth it.

I wish you well. 

Hi Geebudya,

Sorry to be a doomster again, but I had a thought. You mentioned a pain in your back/shoulder and which may be down to a bone issue.

It could be that your bones are vulnerable to fracturing: it is not exactly unusual among myeloma patients. I am relatively lucky in that I have no bone lesions, but that is unusual (my many years of lifting weights have given me strong bones, so even though the myeloma cells have eaten away some bone tissue, there is enough to spare).

I therefore suggest lighter weights for now, until you get the green light.

Thanks - I'll bear your advice in mind, but I really don't do anything very ambitious with weights, just using the various resistance machines at what seems quite low resistance compared to many others I see in the gym (whose membership is largely of a similar age to myself).  I do go quite hard on the treadmill and cross-trainer though, and I'm fully prepared to have to slow down or stop on that at some point due to fatigue from the treatment.

Thanks - I'll obviously just have to wait and see with regard to side effects, and I'm under no illusions that it will be plain sailing.  I'm encouraged by what you say about the effectiveness of the treatment though, and interested in particular at the possibility of some elements of it being discontinued, whether for good reasons or bad. 

Just out of interest, how frequently have you had blood samples checked to monitor the effects of the treatment?

Every four weeks, at the end of each cycle. 

The protocols may differ from hospital to hospital. My own team starts all drugs from day one and then monitors to see how patients cope. Others may have a more gradual approach.  I believe all administer chemo infusions gradually on at least the first two treatment days though so  expect longish days to begin with and then much shorter stays on the day unit. 
My own consultant offered me a reduced dose of Isatuximab or discontinuation of Lenalidomide in July; I opted for the latter as that had more side effects for me. Other hospitals may do it differently though.