Hi Peterb16,
The world of myeloma has a lot of abbreviations. It can be difficult for any layperson to follow.
DVD (and other chemotherapy)
There are a lot of drugs which attack, destroy and/or prevent the growth of myeloma (= bone marrow cancer) cells. Through clinical trials, it has been found that combining different types of chemotherapy drugs is generally most effective.
As each of these drugs has a long name, and a treatment might combine 3 or 4 of them, abbreviations are often used. Also, a drug might be known by both a brand name and by a clinical name. For example, Velcade (the brand name) is bortezomib (clinical name).
DVD is Daratumumab, bortezomib (=Velcade) and dexamethasone. The first two are given by injection, dexamethasone by swallowing tablets.
After diagnosis, the first part of the treatment is generally something like DVD. There will often be other medications to take alongside the chemotherapy: for examlple, I had vitamin D tablets as my vitamin D level were rock bottom when I was diagnosed.
After a few months of DVD or something similar, the patient will often (not always) have an SCT.
SCT
This stands for stem cell transplant. Stem cells are taken from someone (nowadays most often from the patient – this is an autologous stem cell transplant = ASCT, but stem cells can be donated from someone else, most often a relative who matches).
To get the stem cells, drugs are given to stimulate their production and to get them into the blood: they can be collected from there in a process called aphoresis (known informally as stem cell harvesting). This involves lying in bed for a few hours while blood circulates through a machine which extracts the stem cells.
Just before the SCT itself, the patient is given a megadose of chemotherapy. This destroys almost all the cancer cells, but destroys the immune system too. Then the stem cells previously extracted are put into the patient to rebuild the immune system from nothing. Initially, the patient is highly vulnerable to infection, and is kept in isolation for that reason. The recovery process is slow and not everyone can go through an SCT (note: I am not speaking from experience on SCTs as I have a heart problem which indicates that I shouldn’t have one – at least until/unless there is no alternative).
After the SCT, the chemotherapy is typically restarted. This is often on a maintenance basis (i.e. to delay the return of the myeloma for as long as possible).
Regards
Rabbit
Hi Emma,
1. When I was more or less diagnosed (my consultant gave me meaningful looks and handed me a book from Myeloma UK, but the test results were not ready then), I didn’t know what on earth to tell my family. So I told them that it could be MGUS or MM, although I personally expected it to be MM. When that was confirmed, I told them all as much.
All my kids are in their twenties, but I was concerned most about the impact on the youngest, especially as he was at university. It was tough on all the family, but we got through it (and the youngest graduated successfully).
You know how your son will handle the news far better than I of course could, but I specifically recommend telling the school. They can keep an eye on him and take account of the situation with regard to A1 exams (not sure if they are still a thing 😀).
2. I hate being the bearer of bad news, but my experience (everyone is different) is that many of the items that you mention could be difficult for now.
Being immunocompromised can be challenging. Part of that challenge is being around lots of other people and their infections. Outdoor venues are good (especially with winter a long way off), meals out are good (keeping an eye on hygiene standards). Indoors, quieter venues (such as a half empty cinema) and/or wearing a mask is doable.
Breaks: short breaks in the UK sound good. A beach holiday would combine a change of scene (probably) and the chance to rest a lot.
It could also be a good time to plan ahead for when the treatment is over. There is nothing like things to look forward to when the going is tough!
Regards
Rabbit
Hi Blobgob,
I am only in my fifties: that is the key financial reason for the “semi” in my semi-retirement.
Like you, I worked from home during Covid. I still am working from home! Although a lot of employers are trying to get staff back into offices, mine is relatively laid back about this. Besides, commuting would bring unnecessary infection risks (from crowded trains) and my fatigue would make it exhausting.
For myself, I generally have a quiet life of reading, music, exercise and spending time in nature, but I am fitting in as many holidays as possible!
Rabbit
Hi,
You mention a few things. I can respond based on my own experience, point of view and plans, as a layperson with MM.
“At the min the transplant is planned for May/June and we provisionally booked to go away in March 2025. Do you think from your experiences this is possible…” It should be doable. 9 or 10 months is far more than the typical time that people take to recover from a stem cell transplant. The rule of thumb that I have seen is 100 days.
“… and if so do you wear masks etc on flights ?” Personally, I don’t. I have flown – short haul – on 4 return trips since I went into remission. One thing which I learnt from reading up on Covid travel restrictions during lockdowns was that the air on flights is filtered (using HEPA filters), so infections during flights were relatively rare.
“Have been quite reclusive at the minute to try and get through treatment as quickly as possible with no infections etc. the thought of rejoining society can be quite daunting” I went through this myself. Before going into remission last July, I stayed pretty close to home (in South East England). I built up my self confidence by first flying to Scotland (a relative was performing at the Edinburgh Fringe so I travelled around Scotland and saw him on stage), knowing that I could still access the NHS. My second trip was to Denmark/Sweden (which has some of the best healthcare in the world). Yes, my carbon footprint has been pretty big lately!
In terms of infections, one danger is with food and drinks. I suggest caution with the hygiene standards of restaurants, cafes etc. I have been advised not to have ice in drinks, not to have cold salads, to be cautious or to avoid raw meat and fish (e.g. sushi). This was all from a dietitian, to avoid bacterial infections.
Hi All,
To update: I am about to go part time. Despite being in remission, I am too fatigued to continue on a full time basis. Besides, I was planning to semi-retire in a year or two anyway.
This way, I can go on all the holidays that I want (my kids don’t mind me spending their inheritance), especially as my employer has been very supportive.
Hi Emmasue123,
I am now in remission after 1st line treatment, but from the start of treatment I was told that it was possible to skip one my weekly sessions in order to travel.
I would just say – to manage expectations – that chemo often causes fatigue. It may be best to plan anticipating this.
In the end, during treatment I only did a couple of long weekend breaks, partly due to fatigue. That gradually reduced after I went onto maintenance. I am now doing more active travelling (having come to a special deal with my employer on having a lot of annual leave this year to make the most of remission).
Regards
Rabbit
Hi Zozo921,
On lack of appetite: there are high calorie sachets that he can be prescribed, in a few different flavours. Add water to the powder, shake it and get him to drink it.
I lost 15kg from when I was diagnosed. I ate whatever I could to turn that around (biscuits, chocolate etc). Some months into remission, my body has decided that it wants to put weight on: one day last week, I had two lunches and wanted to have a third.
A diagnosis of myeloma can affect people in many different ways. I went through what I call the trauma stage and am now pretty calm in the context of being ‘high risk’ (like your dad).
Personally, I will be damned if I give up the rest of my days to misery due to this disgusting disease!
Is your dad someone who generally doesn’t open up about feelings? Would it help if he talks to Macmillan? For that matter, do you think he would open up if he talks to me?
Regards
Rabbit
Hi Ednarainbow,
Brain fog does happen.
In terms of not thinking clearly, today has been a bad day for me. First I selected a pizza for lunch which contained bacon (I’m vegetarian). Then I managed to leave a heavy weight in such a position in the gym that it could easily have toppled over and hit someone.
However, I think you are referring more to dizziness, as you mention balance and orientation. Currently I am having good and bad days on this. I have mentioned it repeatedly to my consultant (he doesn’t know) but it would be consistent with anaemia.
Hello Dids.
Welcome to the forum.
As spk2021 says, going through chemo can be tough going. I went through quite a few side effects, the single worst being fatigue. I would be a liar to say that it is going to be easy.
BUT:
– You get through it. Having things to look forward to can help.
– Support from you and any other family and friends can help enormously, whether it is keeping his company, helping with chores or anything else.
– If he can maintain interests, that can help. I spent a lot of time in the early months of treatment in nature: listening to and watching birds, for example.
Meanwhile, not everything online is scary. New entire categories of treatment are being developed, including CAR-T, bispecific antibodies, CELmods and dentritic vaccines.
Capt-mh,
Welcome to the forum.
Among your questions, you asked:
“Is the GP the right person to talk to about what other help I may need / have available to accommodate me living alone? Is there someone I should be talking to about financial assistance, home modifications IF needed etc?”
A good source of information and advice is Macmillan Cancer Support. They are really helpful, whether you want practical info or just someone to talk to.
Rabbit
Hi Emily,
Holidays are certainly doable during treatment. I could have done so, but decided not to have a holiday for my own peace of mind. I can then get treatment for chemo side effects from the medical staff who know me, and look forward/plan for when I was going to be in remission.
However, now that I am in remission (which started in July), I have been on three holidays with more planned. Yes, it costs a bit, but sometimes money is there for spending!
It is becoming easier to enjoy the holidays: at first, the fatigue (a common chemo side effect) meant that I had to rest a lot, but that has reduced.
These are suggestions for anyone with myeloma going on holiday:
1. Get travel insurance, disclosing myeloma.
2. Don’t go alone if possible. A companion can really help if you feel rough.
3. Take an EHIC or GHIC card if you are going to the EU.
4. I am choosing to only go to places that have excellent healthcare. Again, piece of mind.
Rabbit
Hi Jenny,
You asked about exercise.
I am on maintenance with Lenalidomide. I have had a discussion with a specialist physiotherapist and this was her advice.
1. Walking is fine.
2. Cycling is also good. I push myself pretty hard on a stationery bike in the gym.
3. I do not have bone lesions and I had been lifting weights for years (I must emphasise that this is not for everyone with MM due to the risk of fractures). She was comfortable with me doing mainstream resistance training – chest presses, squats etc).
She advised against Pilates and yoga as the positions and moves could cause fractures.
Running at speed would be problematic (if you have heard about the forces involved being multiples of bodyweight, you can guess tgat fractures are again the issue) but jogging is OK.
When going through the worst of ‘full chemo’ even walking as exercise was a challenge (heart rate hit 110, I needed to rest frequently etc), but since maintenance started in July I have made good progress. At my best, the walking and cycling are as good as ‘the old days’!
Again, this advice was tailored to my situation and may not be applicable to everyone.
Hi Taffd,
Thank you for your reply. That is very interesting. Sorry that the lenalidomide affected you so much. It is bizarre how the same chemo can cause such variable side effects in different people.
Hi Hyde,
My haemotologist and I agreed that it would be best if I did not go ahead with an SCT. Many reasons…
1. I have a heart condition. The SCT would put strain on my heart that could kill me.
2. He had read recent research that, at least for my high risk version of myeloma, SCT made little difference in terms of life expectancy.
3. I had responded unusually well to the first line of chemo, but had continued to have chemo for the full 6 cycles originally planned (so my cancer cell count would be exceptionally low now I am in remission).
4. The aphoresis didn’t go so well. I only have enough stem cells frozen for one SCT. Better to keep that in reserve at this stage.
Hi Morweena.
This was roughly my experience. Initially the side effects weren’t so bad. However, it got worse (accumulating toxins in my body?) over the first couple of cycles.
The fatigue can be tough to deal with. For me, I had serious sleeplessness for months, which made fhe fatigue worse. Then a friend of my wife’s recommended CBD oil. It has helped me enormously with sleep from the very first night.
Beyond that, I suggest:
– Ask for help from those around you. I am so grateful to my family for everything that they have done (and continue to do)
– Make the most of when you have most energy.
– Follow the Frozen philosophy. If something to be done is not so important, then ‘let it go’.
