Hi Trenchman
Being shielded in a pandemic really doesn’t help us to think positive. Are you on only maintenance medication? This can be a bit of a double edged sword. Although it prolongs inactive disease, and overall survival, some people have low mood and loss of energy when taking it. Also,you are really in the very early days post SCT and need to give yourself more time to recover.
I’m 17 months post SCT & on maintenance. Usually I feel pretty upbeat now, but if I physically or stresswise overdo things I then pay a price with lower mood.
Hi Gary
You are describing exactly my symptoms, only mine is left side.
When I first had these symptoms 6 months after diagnosis I had scans, nothing found. (Im in that unusual group without known lytic lesions) My symptoms worsened significantly at SCT when I had little exercise but no signs of lesions,and now during lockdown have worsened. My consultant is sure it’s not myeloma related, but the back clinic have offered me a CT scan. In my case I really think it’s much more likely to be sciatica. Hope the same is true for you.
For the majority of us having an SCT, the fear of SCT is much worse than the reality. Medical teams have to inform us of all that can go wrong, but in reality most will not have most of the side effects, most will have a few and some manage to get away lightly.
It seems to be usual to have severe diarrhoea as the high dose melphalan destroys cells in the gastro intestinal tract, but although nausea and vomiting are common, they do not necessarily happen, nor does mucosis in the mouth (& this can be avoided by numbing the mouth with ice during the melphalan infusion).
Many people feel well, or ok, for the first 7/8 days after SCT as it takes about a week for the old immune system to be totally destroyed by the chemo. It is at this point when we are neutropenic and at our lowest point physiologically, and physically. Usually patients turn a corner on day 12. This may result in a slow, gradual rise in blood counts, or sometimes is quite marked.
I had a SCT in 2019 and it was physically much easier than i had expected. I felt fatigued but well, and could exercise, until day 9. I had diarrhoea, a touch of nausea but was only sick a couple of times. Between days 9&12 I was exhausted and slept most of the time, but my worst pain came from sciatica from being in bed. By the end of day 12 I realised I was feeling better and was positively elated when I woke on day 13, knowing I’d come out of the other side.
I was discharged the following day, but readmitted on my first follow up appointment as my temperature kept spiking. I did not feel really unwell at this stage though, and was able to read, watch films etc which frankly I had done very little of during my initial stay.
I had gone into SCT having had a VGPR. My blood test on day 38 showed no sign of paraproteins, a complete response.
What I hadn’t fully appreciated before SCT though was the possible impact of collateral damage of the bone marrow caused by the high dose chemo. In my case although my neutrophils rose above the danger zone pretty quickly, they have never recovered to pre SCT levels, and have affected my ability to tolerate maintenance lenalidomide (which extends remission times & overall survival post SCT).
Mind you, I’ve swapped active disease for a slightly dodgy bone marrow, and I would do it again in the same circumstances.
Just to add to my previous post about testing of Indian lenalidomide. Given my concerns about importing medicine, I have had a second sample from a different manufacturer tested with gas spectrometry. This was found to be a very close match to Revlimid.
Obviously it would be safer (& cheaper for the patient) if lenalidomide maintenance becomes available on NHS. And there is a chance Myeloma UK will be able to persuade NHS & NICE to agree to prescribe it post SCT. However if that doesn’t happen, there is another option to consider. Eg Natco, produced in India under licence from the makers of Revlimid, and which is poised to take advantage of the free market once Revlimid comes out of patent in some countries in 2021.
I’ve now been taking lenalidomide sourced in India for 13 months. The seller has proved reliable and still no sign of relapse.
I was hoping that the NHS might prescribe lenalidomide maintenance in consequence of their review of the myeloma XI trial data when the technical appraisal happens in Oct 2020. However it seems maintenance is only going to be made available to the ultra high risk patients, with more than one high risk chromosomal abnormality.
The consequence of this is that those myeloma patients will continue to have average first remission times of 30 months rather than 60 months they could have with lenalidomide maintenance. Prof Graham Jackson was categorical that myeloma patients who have SCT should be taking lenalidomide maintenance afterwards. Overall survival rates improve, by how much isn’t yet known because so many patients are still alive!
Discuss this with your myeloma consultant, ask whether they would want lenalidomide maintenance if they had myeloma. You may find like me that they will treat you as if you were prescribed the maintenance on NHS. This is my experience.
Hi Boston99
It’s not known what percentage of the population have a low level of monoclonal proteins (MGUS), a study is being done in Iceland to try to find the answer. I am not a doctor, but suspect if your electrophoresis test had suggested a significant monoclonal spike, you would have immediately been referred to a haematologist under the 2 week wait cancer screening protocol. This is what happened to me when mine was found after a series of tests to find out why I was anaemic. By no means all people who have monoclonal proteins, even though they are ‘abnormal’, need treatment,for people of your age only 1% a year progress to having full blown myeloma. I hope you are worrying unnecessarily!
I think there will be consequences from coronavirus for everyone: life as we knew it will be different, myeloma or not. Everyone’s difficulties in life will be exacerbated.
Data is not yet collated to determine what additional risks we as myeloma patients have in terms of coronavirus, in the meantime the NHS/govt have opened up treatment choices to our consultants which gives them more flexibility to treat us in the least compromising way possible, & this makes me feel reasuringly valued. Anecdotal evidence shows that most myeloma patients in high risk areas have managed to avoid getting coronavirus so far, and that sometimes they have avoided being infected even when ‘healthy’ partners have had severe infections. (Reported by a myeloma consultant in New York)
Some myeloma patients have had severe complications and survived, some of us seem remarkably good at beating the odds. I’m not yet ready to concede that my life will have been cut short by coronavirus, although statistically every one, myeloma or not, will have a reduced life expectancy as so many people will have died.
I suspect that we will be advised to stay in isolation for a very long time, but as Rebecca says, at some point it will be up to us as individuals to determine risk/reward for ourselves. I suspect as myeloma patients we will be pretty good at it as a group as we are already aware of infection risk, that’s my hope.
All myeloma patients will recognise the fear and uncertainty you as a family are experiencing during this period of diagnosis.
I was diagnosed in Suffolk (I suspect at the same hospital) nearly 2 years ago, and wish I’d had confidence that is feel so well, or even be alive now, but my GP had warned me I might not be alive in 3 months! As it is I lead a normal life, albeit with a level of fatigue I didn’t have prior to myeloma. I chose to be treated at Addenbrookes in Cambridge as I was told a stem cell transplant was a good option for me, and I was prepared to have extra travelling time to be treated by a myeloma expert.
The average age on diagnosis is about 70 and incidence peaks in 80s but people of these ages can be successfully treated and symptoms reversed even though ultimately the myeloma will come back.
Treatment is mostly done as an outpatient although we are prone to needing hospital stays as a consequence of low immunity (although my only inpatient stays have been related to my stem cell transplant.)
With best wishes
Jane
I am on lenalidomide maintenance, 6th cycle. I had used lenalidomide during induction (RVD) & had had a few side effects, leg cramping & constipation. I’m now on a lower dose, 10mg a day & still have these side effects to some extent. My platelets are quite low now (127, should be 150+) TBH I’m disappointed about the extent my bloods are taking a battering, although I’m pretty well and able to get on with life.
I have chronic constipation as a side effect from Lenalidomide & find it essential to use laxido daily whilst on the drug. Keeping to regular laxido use totally prevents painful and preoccupying problems.
Dear Paula and Laura, I hope that you both have some answers now. Your experience with the initial medical contact feels very familiar, although my GP managed to frighten me to desperation telling me people can die of myeloma within 3 months. He would have been better leaving it to the haematologist! (18 months later i feel much better & no-one would know I have myeloma) However I found that once myeloma was diagnosed, a brilliant NHS system kicked in. I was able to change hospitals so that I could see someone with alot of experience of myeloma, have a dedicated myeloma nurse who is a font of knowledge, and all the staff who deal with me are cheerful, compassionate and helpful. If you do have myeloma, you will not be dealing with it alone!
Hi lily
I had aSCT in Feb. I was lucky enough to have only minor ill effects & although I was readmitted to hospital I wasn’t really poorly.
I needed to spend a few weeks recouperating but by day 37 felt a lot better. Later I was told that blood tests on day 37 revealed that I’d had a Complete Response. This is a lot sooner than most people so maybe I recovered from the procedure quicker too.
I think the key things are to do some physical exercise in moderation and to eat a healthy diet and beyond this to try to get back to a part time normal life. I hope your father is soon feeling himself again , and all the better for not having to spend so much time and energy on treatment.
I am 61 & had a SCT in February this year. My understanding is that at the moment, on balance, SCT is still the most effective treatment for those who are healthy enough to cope with the ‘ sledge hammer to crack a nut’ approach. This may not remain the case, it is thought new drugs will become the better option. Although all the potential risks of SCT are spelled out, only the most unfortunate experience serious problems and for some, like me, really it involves nothing more than a few days of total fatigue and upset stomach followed by a few weeks of recovery. The promise of a drug free period of remission afterwards however is a sham. UK research (myeloma X1 trial) shows that post SCT remissions are almost twice as long (58 months Vs 30 months for standard risk patients) if we have Lenalidomide maintenance after the transplant. The choice should be on going high dose lenalidomide & Dex (with its side effects) Vs SCT then lower dose lenalidomide. Lenalidomide has fewer side effects than some other myeloma drugs, but is not free from them. Currently the NHS will not provide maintenance post SCT. This is due to be considered by NICE/NHS in Oct 2020, however a little bird tells me the powers that be are considering making it available only to newly diagnosed patients, not to us who are already in remission.
Having read about patients potentially having blood sugar level problems with dexamethasone, I cut sugar from my diet, except from whole fruit and vegetables (ie no fruit juice). I did this to avoid sugar cravings and highs and lows. However I didn’t experience any mood changes with Dex, nor sleeplessness. I may just have been lucky, but if you are having problems with Dex it may be worth trying cutting sugar from your diet temporarily.
Younger people statistically have the best responses to current treatments. Myeloma is more of a steeplechase than a sprint.
