Thank you ted369 for posting. It makes frustrating and disheartening reading, but does show the APPG recognises our plight in terms of COVID risk.
Glad to hear that commonsense has ultimately prevailed, and you have been able to have the booster.
Welcome Lollipops, and thank you for sharing your truly horrific diagnosis experience. Fortunately most of us don’t find out we have myeloma in such a dramatic, life-in-the-balance way.
In terms of stem cell transplant, bear in mind that our doctors are obliged to tell patients of all common and less common side effects, as they do with all procedures. Although most of us have some reactions, few of us have really serious ones, and none of us have ALL of them. It isn’t nice going into hospital feeling well, as many of us do, knowing that we’ll feel rubbish for a time, but bear in mind many people agree to having a second transplant- because relatively normal life the other side is so worth it, and we can go on for many years before relapse and starting treatment again. Incidentally my friend who was diagnosed with myeloma 18 years ago also almost died in hospital at diagnosis, but she’s still here, leading an active life 18 years on. (I saw her yesterday)
As I understand it, the stem cells go through a centrifugal process, myeloma cells tend to be heavier and ‘drop out’ (I’m sure that’s not the ppptechnical term). The golden cells are then put into small packs in a solution that smells of sweetcorn and deep frozen in liquid nitrogen, which are stored until needed. They will be thawed in front of you, then reinfused through a port, a painless, relatively quick process, a day or two (depending on your kidney function) after you have the melphalan. Everyone other than you will be very aware of the smell of sweetcorn.
Sending very best wishes for a smooth ride through your SCT Ethan. Try to use as much ice as possible ( total overload) prior, during and after the melphalan infusion, it really does prevent mucositis, or the worst if it.
Hi George, welcome to the forum. It’s always profoundly shocking to be diagnosed with myeloma, the more so when your children are young. Hopefully in time you will be able to assimilate the disease into a good quality long life, not only being there for your children, but playing a very active parenting role. I am older than you, but I too was diagnosed incidentally, which is a very good thing I now think, though I didn’t at the time. Like you my myeloma was active when diagnosed, but since induction treatment and stem cell transplant 4 years ago I’ve been happily living an almost normal life. I personally know myeloma patients who’ve been living with the disease for 17 & 18 years, and internationally there are patients who have lived for over 30 years. More of our generation of patients, with the current and new potential treatments in the pipeline, will live longer than ever with the myeloma, more like a chronic disease.
With stem cell transplants, our doctors have to warn us of side effects, and there is a long list of potential problems. However that’s a bit misleading really. Very few patients experience the most serious side effects, likewise very few patients have none. (Although I know someone whose only side effect was losing her hair). Most have a few side effects, enough to make them think “never again” immediately afterwards, but not enough to put them off a second transplant once they have benefitted from a good ‘remission’. A bit like giving birth really.
My experience was far less traumatic than I anticipated. I had pretty severe diarrhea & was somewhat tired but nothing much else for the first 8 days followed by nausea but not much actual sickness, extreme fatigue and sciatica for 3 days. On day 12 I gradually felt better and knew I was over the biggest hurdle, even though I had picked up a virus (despite being in isolation). I was discharged then readmitted because of the virus, but was recuperating in hospital rather than being ill with it.
I was raring to go by day 100 and went off on a walking holiday up and down Cretan gorges, pretty much back to my old normal.
Personally I’ve found the consequences of avoiding COVID risk when being immunocompromised more challenging than myeloma per se.
I hope you have a good response to your induction treatment and that your hurdles through it are little ones.
Best wishes, Jane
Hi Jenny, welcome to the forum.
You will have a break between the end of your induction therapy (D-VTd) and your stem cell transplant.
Exactly when that is and what happens will depend on your response to your current treatment.
Sometimes patients have an additional cycle or two if their myeloma levels are still present but are going down.
If you still have myeloma cells evident in tests (about half of us do), you will be given a one off dose of cyclophosphamide which is a chemotherapy drug. You will lose your head hair 2 weeks later, but should also lose remaining myeloma cells.
You will then be given a drug to stimulate stem cell production in your bone marrow. You will have to inject yourself daily with this for a week.
Then you will spend a day on an apheresis ward, whilst a machine like a dialysis machine removes your stem cells from your blood. This isn’t painful, but you have lines going in and out of both arms, so self care is next to impossible!
Stem cells sometimes only take a day to be collected, but can take a few days, or even a different drug to be used, in which case the process takes an extra few weeks. Once collected the cells are frozen in liquid nitrogen (?) until required.
The actual transplant happens a few weeks later, not necessarily in hospital. Some patients go backwards and forwards from home if they live close by, or stay in a hostel within the hospital site. Each hospital has their own arrangements.
The process starts with a high dose of a chemotherapy called melphalan. This destroys all the stem cells in the body (it’s a good idea to protect cells in the mouth and throat by sucking ice). Any remaining myeloma cells should be destroyed. The next day, or 2 days later if you have kidney problems, your stem cells will be delivered back to you by drip.
Patients react differently to the process. Some of us are quite sick after the melphalan, but others feel quite well for the first 5-7 days. During this time old stem cells will be dying off and not be being replaced. At this point all patients become neuropenic and vulnerable to infection. If patients are poorly they are always admitted to hospital. The new stem cells will establish themselves gradually, and our neurophils tend to start being evident on day 12. I definitely felt I was getting better on day 12.
I hope this answers your questions!
Hi mikea, welcome to the forum and to the exclusive club that is myeloma, a club no-one wishes to join. Fortunately membership tends to last a lot longer than outdated internet articles suggest, so it’s probably a good idea to restrict your information finding to Myeloma UK, Healthtree Myeloma and the International Myeloma Foundation for now.
The results that you posted suggest to me (not a Dr, but an informed patient) that you have just tipped into what is known as Smoldering Myeloma, when the disease is at a low level that doesn’t yet require treatment. (In other words where the downsides of treatment outweigh the risks of not treating you). Sometimes patients can stay in this “Smoldering” category for years- I have contact with one patient who has for 18 years, although i think that’s exceptional.
The normal practice is to monitor Smoldering patients every few months to check that their myeloma is not progressing. Paraproteins (yours are 11g/l) can reach 30g/l before myeloma is considered active, unless any physical damage is being done, ie you have so called CRAB features, that is either high calcium levels in your blood, kidney (renal) damage, anaemia or bone lesions or fractures are evident. You need to become very aware of your body and to report suspicious pains just in case. Often before diagnosis myeloma patients have experienced pain which either they or their doctors have dismissed.
I’m sorry to hear that you’ve had two other cancers. There are a significant number of myeloma patients who have had cancer before unfortunately. At your age (being under 60) you may be able to get genetic testing to see if there is a link between these cancers. This might be something to ask your haematologist when you have another appointment.
You will go on being tested regularly from now on, as all myeloma patients are. I hope you smolder for a long time! You won’t feel it at the moment, but it will be to your advantage that your myeloma has been caught at an early stage.
Hi Sheena, sorry no one has answered so far.
My understanding is that CAR-T is now an approved therapy for leukemia in children that has failed to respond to chemotherapy in uk, and that major transplant centres in UK have been designated CAR- T hubs for more general use of the procedure. Approval for it’s use against myeloma was anticipated late last year, but things went quiet when there was world wide difficulty obtaining the fluid preparation that the T cells are grown in. This was, and I think is, severely limiting the CAR-T treatments going ahead in USA and other countries. I wonder if this is causing the delay in UK?
Drs at the hospital I attend (which is one of the designated hospitals, with at least some designated staff) , who were talking about CAR-T last year, are now talking to MM patients about the potential of BiTEs rather than CAR-T, at least in the first instance.
I think this is a question to ask your husband’s consultant.
Best wishes
Jane
35 is very young to be diagnosed with MGUS, but a longitudinal study being done in Iceland IstopMM, gathering data from all the adult population over 40 who will agree to do it, has already shown that MGUS is more common than was believed.
Although the peak age for developing MM is around 70, there have been a few children diagnosed with the disease, let alone MGUS. Hopefully your paraprotein level will just stay stable, causing you no harm. I think it’s worth trying to keep inflammation down, I was diagnosed with hypothroidism (Hashimotos) at the same time as MM and I believe that the inflammatory processes involved in both, made both conditions significantly worse. Now my MM is stable I’ve had no further issues with my thyroid.
I’m another patient who definitely tries to save worry for when I know it’s needed, it’s a useful strategy in life in general although I suspect all of us were rocked to the core when we were diagnosed , whether that was with MGUS, Smoldering MM or active myeloma.
For me the sleeplessness seemed to be routed in anxiety and the stress of diagnosis as I’d never experienced sleep problems before. If this is true for you, this really won’t last forever. One day you will find you’ve not thought about myeloma for a short while, then these periods extend and eventually the diagnosis & the disease become just a part of who you are and how you live your life. As this happens your sleep will improve, except on occasions that you are taking dexamethasone. Even then I found that by cutting out sugars (except fruit) I did not suffer from Dex highs and lows that most patients suffer (although I was taking zopiclone for sleeplessness). Dex causes blood sugars to spike and my theory was that cutting sugar consumption would mitigate against the effects of Dex. It worked for me.
I hope you soon have the good news that treatment is working.
Hi Maria, I tried CBD immediately after diagnosis, (before treatment started, 3 months later, as I changed hospitals). I found it damped down the trauma of diagnosis for me. The analogy I’ve used is that I felt I was in a small boat in stormy waters, the CBD literally immediately calmed the waters down. I didn’t find that it helped enough with sleeplessness as I kept waking up. Like you I had not taken medicines previously but in the end I resorted to a short term prescription of zopiclone. The zopiclone broke my cycle of not being able to get to sleep, and I felt I got a good night’s sleep. I think I used zopiclone continually for two months (until treatment actually started) then a half dose occasionally, but I haven’t needed it since my MM treatment started working- I’m now nearly 5 years post diagnosis.
Hi Jenny9,I hope your partner’s recovery is swift and straightforward.
I was prescribed vitamin D3 & K2, and vitamin B12 so was taking both during my recovery from SCT. It’s common for myeloma patients to have low levels of both of these, but not all of us. A B12 level test can easily be added to a routine blood test, or at least it is for me occasionally.
It’s worth asking the consultant about taking vitamin C & echinacea whilst on consolidation therapy, not many of the longer treated myeloma patients had consolidation cycles, and even fewer have had daratumumab in the mix, so in this instance patients may not be the best people to ask. I have read that some myeloma patients take echinacea but that it shouldn’t be taken continuosly.
Hi Yvonne I hope the consultant is able to reassure your husband and yourself somewhat today.
Back pain seems to be the most common way that Myeloma is diagnosed, often there are fractures and a great deal of pain. The good thing is that over time and with proper use of painkillers most patients regain full function. Someone in my local support group spent 6 months in a wheelchair after diagnosis- but that was 18 years ago and since then she’s regained a very active life, including leading a hiking group. She’s had a very active life, in recent years taking holidays abroad every 2 months or so, even during COVID.
It’s always profoundly shocking to get this diagnosis for oneself or ones spouse, especially to hear that it’s not a curable cancer. However it is very treatable, and most younger patients like your husband do very well, and have long periods of stability when myeloma is not the main thing in life.
Welcome to the forum.
In many areas there are local myeloma support groups that enable patients to have face to face contact and friendship with other people living with this disease.Myeloma UK has a list of these on the website if you think this may be useful for you.
We all share the experience of being profoundly shocked to get this diagnosis, but with the treatments now available and with even better ones in the pipeline, many of us can anticipate leading pretty normal lives over many years.
For some years now I’ve described myself to my consultant as a fraudulent patient- I hope you will come to feel like this too!
Jane
I think potentially some patients may react differently to the fillers used in any prescription drug. I take a generic thyroid drug which is fine for me, but I know a few patients have side effects from it, and need to be prescribed the original, more expensive, version.
Conversely I suppose it’s possible that we might have fewer side effects from the fillers in a specific generic drug.
Something for our doctors to keep an eye on…
