rabbitHi Gilliland and welcome to the forum.
A few things come to mind.
– The chemo can itself cause mood changes. I had bouts of depression during treatment. They felt ‘artificial’ as there was no real emotion behind them. However, 2 years on, he would surely be on maintenance chemo – fewer medicines and lower doses?
– Being diagnosed with incurable cancer can be pretty devastating. I snapped out of it after a few months, but some don’t.
– Related to that, there are knock on effects. As he broke his neck at work, is he not able to work any more, for example?
– That comes on to the next thing. Men do sometimes bottle things up, and value themselves in terms of being a breadwinner (my username doesn’t make it clear – I’m male!). That combination could be the cause?
Regards
Rabbit
rabbitHi fenr65 and welcome to the forum.
First things first: as your myeloma is smouldering, it could be worse. How are your bloods (neutrophils seem to be the most relevant here)?
Getting antibiotics was the right thing to do.
Advice from AI:
Recommended Precautions & Action Plan
If someone with SMM is scratched or bitten by a cat:
Immediate Wound Care:
Immediately wash the area with soap and warm running water for at least 5 minutes.
Apply an antiseptic (e.g., povidone-iodine or chlorhexidine) and cover with a clean bandage.
Low Threshold for Medical Evaluation:
Contact a primary care physician or hematologist promptly. Due to the reduced immune clearance, doctors often have a lower threshold for prescribing prophylactic antibiotics (such as amoxicillin-clavulanate or doxycycline) for scratches or punctures from animals.
Monitor for Warning Signs:
Watch closely for redness expanding beyond the wound, severe pain, swelling within 2 to 24 hours, pus, unexplained fever, chills, or enlarged lymph nodes (under the armpits, neck, or groin).
Preventative Steps with Household Cats:
Keep domestic cats indoors to reduce their exposure to fleas (B. henselae vector).
Use regular flea prevention treatments on pets.
Avoid rough play that leads to scratches or bites, and do not allow cats to lick open skin wounds.”
rabbitHi Graham and welcome to the forum.
Flu symptoms are pretty normal with zoledronic acid. I am a bit surprised that they have gone on for 5 days, though.
The chemo treatment generally can cause fatigue – I was fine for the first few weeks before it hit me. It can be difficult to figure out which medicine is causing which side effect when there are so many!
All the best to you.
Regards
Rabbit
rabbitHi jjc and welcome to the forum,
Firstly, on your blood test. Paraproteins do not necessarily mean active myeloma. That all your other bloods are OK could well mean that you have MGUS. About 0.5% to 1.5% (according to AI) of 47 year olds have MGUS and for a high proportion of them it never develops any further.
Worst case scenario: some day it develops into active myeloma. As someone who was diagnosed with the worst of that worst case, people can live long, long lives with it these days. In 2022, I was told that I had high risk (= aggressive) stage 3 active myeloma. Earlier today, still in my first remission, I worked out in the gym for an hour. Yesterday I finished booking a holiday in Italy (I have been on lots of holidays in remission).
Since my diagnosis, I have seen my ‘kids’ (they are adults) make so much progress in life: studying, working, in one case talking about marriage! I have been around to help them, congratulate them when things have gone well, comfort them when things have gone less well…
Prospectively, many highly effective new treatments have been approved in the last couple of years.
Please feel free to post your blood test results here and/or ask anything you want.
All the best to you.
Regards
Rabbit
rabbitHi Bellawest,
Back to our AI overlords 😀 on smouldering myeloma clinical trials:
“…clinical trials and research studies for myeloma do take place in North East England—most notably through major regional centers like the Freeman Hospital and the Sir Bobby Robson Clinical Trials Unit at the Newcastle upon Tyne Hospitals NHS Foundation Trust, which works in close collaboration with researchers at Newcastle University.”
Regards
Rabbit
rabbitHi Bellawest,
Whereabouts are you?
Regards
Rabbit
rabbitHi Bellawest,
I can help on that one. Before a treatment is available to the general public, there are clinicals trials of it followed by an approvals process. No treatment for high risk smouldering is approved in the UK yet.
However, quoting AI “LINKER-SMM2 and MODIFY are clinical trials evaluating early intervention for smouldering myeloma that have active involvement or sites within the UK.
Because standard NHS practice for smouldering myeloma is active monitoring (“watch and wait”), these trials represent key avenues for patients aiming to access advanced therapies early.
1. LINKER-SMM2 Trial
What it investigates: A Phase III study comparing the bispecific antibody linvoseltamab against the monoclonal antibody daratumumab in patients with high-risk smouldering myeloma.
UK Status: It is active at select UK hospital sites (such as University Hospitals of Leicester, Royal Cornwall Hospital, and Norfolk and Norwich University Hospital, though participating sites can expand over time).
2. MODIFY Trial
What it investigates: A trial evaluating a combination therapy involving isatuximab, iberdomide, and dexamethasone specifically targeted as a treatment for smouldering myeloma.
UK Status: It is open and recruiting at major UK centres, such as University College London Hospitals (UCLH), under leading UK myeloma investigators.”
Regards
Rabbit
rabbitHi Bellawest,
Short answer: no, a cancer nurse (covering all cancers) is not as good as a haematologist (focussed on blood illnesses). Best is a myeloma specialist.
Having said that, if you post your blood test results here, we can try to figure out what is going on.
Regards
Rabbit
rabbitHi Citlenblk and welcome to the forum.
As your light chains are very high but you haven’t had an MRI yet, am I right that you haven’t had a myeloma diagnosis yet?
“Functional Medicine” doctor. I haven’t encountered that before, but my reading up indicates that they deal with root causes.
I’m glad that you mention that this is in conjunction with the NHS, not instead. I suggest keeping your haematologist informed, to make sure that there is no adverse reaction.
Assuming that you are diagnosed for a moment:
– Some supplements could put a strain on you body. For example, some require your kidneys to be working well, but poor kidney function is one frequent symptom of myeloma (typically measured by “eGFR”: healthy is around 90, but even in remission mine is only around 60).
– If you have treatment including Bortezomib (= Velcade), some things are normally good for you such as green tea and vitamin C supplements can stop it from working.
In short, I suggest going ahead, but cautiously.
Regards
Rabbit
rabbitHi Tetley and welcome to the forum.
Your post implies that you have kappa light chain myeloma. If so, do you know what your lambda light chains are? The kappa/lambda ratio is also relevant, as a ratio in the normal range may indicate that both are high, maybe due to a routine (but possibly symptonless) infection.
Do you have any information on what the possible treatment change might be? I recommend really pestering them with questions (or if you are uncomfortable with doing so, going with a friend or relative who does that).
The frequent changes of doctor is also bad because there is no chance to build up a rapport.
I also suggest asking for a paper copy of your blood test results. You may also be able to get test results on the NHS app.
By the sound of your post, you have got to take control of the situation.
All the best.
Regards
Rabbit
rabbitHi Macca70,
I’ll cheat in my response: copying and pasting from previous posts!
Before diagnosis: cycling in the gym, heavy resistance training, running, walking. Generally doing a fair bit of exercise 7 days a week.
After treatment started: fatigue hit me hard after a couple of weeks. I stopped going to the gym (out of sheer bloodymindedness I didn’t suspend my membership!). Stopped running too. Forced myself to walk as much as possible, though it was a huge effort. Fatigue also meant that I had a daytime nap almost every day.
After 6 months of treatment (no ASCT), I got back back into the gym, as fatigue was just starting to reduce. I am a very tall man, but even so, losing 16kg – largely muscle – meant that when I restarted it was from a low point in terms of cardio fitness, muscle and stamina.
However, I had gone from being very strong for my age to pretty weak. I had little stamina, cardio fitness or muscle! Physically, it was hell. I started with very light weights and a low cycling gear, but I was still in and out in a matter of minutes. My legs looked so spindly when I restarted squats that they looked like matchsticks. Likewise, my arms were (my wife’s description) ropey.
It took one hell of a lot of effort and willpower to keep doing the extra reps and increase the weights, as well as to keep increasing the gears and time cycling.
Regards
Rabbit
rabbitHi Macca70 and welcome to the forum.
I have kappa light chain myeloma. At diagnosis in late 2022, my kappa light chains were around 5000. Since going into remission, they have been at a normal level: according to my blood test yesterday, I am still in remission and they are now 10.6!
From what you say, your husband is on the standard treatment and is making progress.
I have not had an SCT. I have a dodgy heart, and my cardiologist advised against. Also, I didn’t want to go through one: I was desperate to get on with life.
I am not trying to sow confusion, but I have found that the NHS pushes transplants very hard when they are not in fact compulsory.
Regards
Rabbit
rabbitThank you jomjo75,
Just heard a few minutes ago that I am still in “partial”/”effective” remission for another cycle 😀.
Regards
Rabbit
rabbitHi cricketlover26 and welcome to the forum.
I asked AI about hearing issues and myeloma, as this is a new one on me (even though I read up a lot and actually have somehow had more sensitive hearing since treatment started. The relevant bit is as follows:
“Treatment Side Effects (Ototoxicity)
Certain medications used in myeloma management can damage the inner ear:
Bortezomib (Velcade): Known primarily for peripheral neuropathy (numbness/tingling in hands and feet), it can occasionally affect the auditory nerve, causing sensorineural hearing loss or tinnitus.
Supportive Medications: High doses of loop diuretics (like furosemide, often used to manage fluid retention or hypercalcemia) and specific antibiotics or antifungals used to prevent infections during treatment can be ototoxic.”
Regards
Rabbit
rabbit… ignored! (Sorry about the split message 😀).
Regards
Rabbit
