Hello Dids,
You may have read some of my posts. I was diagnosed 2 yrs ago with 3 HR markers. I’m just coming to the end of my first year of treatment. I didn’t start treatment in the first year as I was initially smouldering, then my partner became seriously ill and underwent major bowel surgery, then my father died…all in the same year. Fortunately for me, the myeloma was picked up incidentally, and apart from worsening anaemia, I had no symptoms.
It’s a scary time when first diagnosed and I cannot tell you not to be scared as it’s not that simple. I can only share my experience and hope it helps. I lost my mojo (including my sense of humour) for 4 months after diagnosis. It took me that long to get my head around it. Good to hear your husband is coping well, but I understand it’s hard for you. My partner doesn’t talk about it much, but that’s normal for a man! However, I know he is worried about me and the future.
Good that you don’t Google the disease as I did a lot of that and it only served to increase my anxiety. I no longer read stuff online, except here at MUK.
I have generally coped well with the treatment, with minimal side effects, although I did find the SCT tough going (can’t sugar coat it!) Everyone is different and I do hope your husband manages well. Btw, I was 59 at diagnosis and relatively fit. I’m vegan (not good in terms of hospital food!) I recovered well from the SCT and was getting out and exercising a lot about 2 months after coming out of hospital. Then a cold hit me, which turned into a chest infection for which I had strong antibiotics, which in turn set my stomach off and I lost 6kg! Then my iron went really low and I had an infusion. After 2 months of being poorly, I’m now feeling pretty good. Just been on a 6.25 mile Nordic Walk today!
Key to my ability to cope has been finding the right consultant and the amazing support I get from the whole team at hospital. I’m participating in a trial and am on a high risk pathway which is not otherwise available on the NHS. If your husband is able to join a trial, I really recommend it. I travel weekly c. 120 miles round trip but it’s worth it.
Sorry this post has got so long! I hope this helps a bit and doesn’t add to your anxiety! It’s not a nice place to be, but us animals have an amazing ability to adapt! And remember that there is a lot of research into myeloma and its treatment and new treatments being developed all the time.
Please do message again with any questions or concerns. I think peer support is really important and wish that I had reached out in the early days too.
Kind wishes,
Shelagh
PS There’s also a side effects thread which may be helpful. Having said this, I found looking in this forum too stressful in the early days, so you may prefer not to dig around too much until the dust has settled. Also, don’t focus on the lists of side effects provided with the treatment information! They have to list everything!
Another consequence of Brexit?
Re. the above post, I meant to refer to a ‘treatment’ thread in this forum (now edited as I only just noticed that’s possible).
Dear Fran
I’m sorry to hear that your husband is in hospital, though as you say, he is being well cared for and obviously in the right place.
It’s a hell of a lot to take in at this early stage, but I think if you read some of posts in this forum, you will see how well many people cope with myeloma and it’s treatment. There’s a ‘treatment’ thread which may be helpful too.
The three drugs you mention are standard treatment, although usually with the addition of Dexamethasone. I was diagnosed c. 2 years ago and started treatment via a trial in January this year. My induction was 4x 3 week cycles of a five drug regime: Velcade (Bortezomib), Lenalidomide (similar to Thalidomide), Isatuximab (similar to Daratumamab), Cyclophosphamide (chemotherapy drug), and Dexamethasone (steroid). In general, I coped well during treatment and had minimal side effects. The worst for me was dealing with the steroid as it wears off and tiredness/fatigue kicks in. As you know, myeloma is a very individual disease and no consultant can predict how each patient will respond to treatment. I was a pretty healthy and reasonably fit 59 year old woman at diagnosis (in my case it was picked up incidentally), and I started treatment at 60 (I was smouldering at diagnosis and chose to delay treatment until necessary, also because my partner became seriously ill that year and underwent major bowel surgery, then my father’s health declined and he died). My haemoglobin was borderline for treatment when I started. General health and fitness is said to help to cope with the treatment, but I think how we each respond depends on so many factors.
Re. continuing life as normal, I know that a lot of people continue to work or go back to work after a break. When I was diagnosed, I was in a sort of transitionary period moving from projects ending to new projects starting. I couldn’t continue with my normal work life which involved travel to far-flung places, including fieldwork in remote areas. I wore many different hats with a range of professional commitments. I did a bit of consultancy work over the past two years, but have now given up all my planned projects and other responsibilities. I never thought I would give up work as it was central to my life, but putting aside the fact that treatment and the associated monitoring and ‘admin’ (emails, phone calls etc) takes up a lot of my time and energy, my priorities have changed completely now that I have myeloma.
I hope this is of some help and wish you and your husband well with your ongoing journey. I do hope you have a good consultant and good care. It’s so important to feel confident that you’re getting the best care available.
Best wishes
S
PS It’s good not to think about the SCT until further down the line. I did the same.
Postscript to my previous message as I had not noticed there was a second page!
In case you do read this Zainab, I wanted to say how sorry I am that you had an early relapse. I wish you well for your current and future treatments, whether on or off trials.
Kind wishes
S
Sorry I’m more than a year out of date on this thread but have just joined the forum and finding it helpful to share experiences. I shied away earlier on in my diagnosis and treatment for fear of information overload and tbh, not wanting to feel part of a ‘club’ (of myeloma sufferers). I hope this makes sense. I joined lately as I’m having a bit of a tough time physically and mentally, and feeling very isolated.
I joined the RADAR trial in January and as a high risk patient am now half way through the consolidation treatment which is part of a high risk pathway. My response after induction cycle 1 was remarkable and after the 100 post-SCT recovery period, I was MRD negative.
I am wondering how others are getting on with treatment under the RADAR trial
Best wishes to all.
S
Be careful to check with your consultant that it’s okay to take curcumin while on treatment. I had to stop taking it when I started treatment as there is some evidence that it can affect the effectiveness of the drugs.
S
Dear Suzi
I am very sorry to hear of your relapse and bone lesions. I was diagnosed at 59 with ultra high risk SMM which progressed to active within a year. I started treatment via a trial in January this year. I am under excellent care, and I feel being on a trial gives me an extra layer of care as I have a team of trial nurses behind me, in addition to my excellent consultant and the myeloma specialist nurses.
I am surprised to hear about your paraprotein levels and bone lesions. Surely these should have been picked up early with regular blood tests? Might it be worth questioning this?
The uncertainty of living with myeloma is extremely hard and very isolating. Reading the other responses has reminded me that I must do a mindfulness course too. ‘Worry time’ has also been suggested to me by my cancer counsellor, but it’s hard to put into practice and depends on so many other factors related to our physical and mental health.
I noticed the other day that there’s a webinar available to watch on myeloma and uncertainty which I intend to watch. Now that I’m nearing the end of my first line of treatment before moving on to maintenance, the fear of how long I’ll be in remission is increasingly rearing its ugly head.
Please remember that treatments for myeloma are developing rapidly and that there is no limit to the number of lines of treatment you can have, as long as you are fit enough to have it. In my view, participating in trials is also hugely beneficial as we receive the most cutting edge treatment via trials.
I really hope you have a supportive medical team behind you. I have 100% trust in my consultant and all the team and consider this to be vital to ease my mind.
I wish you all the very best.
S
Hi
Happy to give you more info if you have any questions 🙂
S
Dear Kar
I suppose it depends what treatment your husband is having and whether all goes according to plan. By that I mean I missed a week of induction treatment when my liver function was a bit dodgy, and lately missed two weeks because of a cold virus. But in my case, I had 4×3 week cycles of induction treatment followed by SC harvesting a few weeks later, then a break of a few weeks before my SCT, which was followed by a 100 day recovery period. Then I went pretty much straight into the consolidation treatment (after all the usual tests) and am half way through that. In total, this first line of treatment will have taken a year.
Best wishes
Shelagh
I’m sorry to hear of your husband’s experiences on the road to diagnosis.
I started treatment in January (4×3 week cycles) before having a SCT in June. I’m now having consolidation treatment (I’m participating in a trial and on a high risk pathway).
I don’t remember being told not to socialize (except for post-transplant until my blood counts improved), but I recall that I was cautious during my induction treatment, knowing that the treatment itself would cause my immunity to be more compromised than it already was. From September (when I was still in my 100 day post-SCT recovery period), I started to be a bit more relaxed and while still cautious, I became more inclined to throw caution to the wind. Unfortunately I ended up catching a bad cold virus from which I’m only just recovering nearly five weeks later! The bottom line is that it all depends on one’s attitude to risk and balancing that with enjoying life! Perhaps my visits to the sauna weren’t really advisable but it felt good at the time!
There is definitely a lot of useful information to help guide you on the MUK website and it’s clear that many if not most people with MM do continue to live fulfilled lives. Adjustments have to be made, but sometimes they can actually turn out to be positive.
Best of luck with the coming weeks.
S
Yes, that’s right. I didn’t realise I’d revealed that information here! I am under excellent care and feel very fortunate. It’s a long journey for me each Friday (c. 1hr 40mins each way), but it’s worth it.
S
Dear Sandra
I am so sorry to hear that there were complications with your SCT. That’s awful for you. I guess in the grand scheme of things, mine went reasonably well. I suffered really bad mouth and throat pain and couldn’t swallow at all for four days — not even my own saliva! Unfortunately I also had a severe lower back flare-up while in and it course a haematology ward is not prepared for that!
It’s interesting to hear that your consultant also doesn’t believe in the UHR categorization and I’m starting to wonder how widespread that opinion is (unless by chance we have the same consultant!)
I’ve been very fortunate to join a trial for my first line treatment which I started in January. The trial was amended this year to add a high risk pathway which has meant I only needed one SCT with a 100 day recovery period followed by 4×3 week cycles of consolidation treatment has (I’m about half way through that) before moving on to maintenance.
Re. information from consultants and other medics, I ask a LOT of questions! My consultant is always making fun of me about it and always puts me at the end of her clinics! There was a point where I read too much (including research papers) and that just got scary, so I stopped. But I do think it’s important to be well informed so that we are involved fully in the treatment process and understand the outcomes and implications. Consultants are there to support us and that includes answering all our questions, however annoying they might be!
Re. markers, I’ve have to look back at clinic letters to remember what mine are, but I’ve basically let go of those details as I don’t think it helps to dwell on it. I know I have three HR markers, one of which is associated with progression, but I prefer now to try to not focus on what they are as it just kind of adds to my anxiety.
Again, I’m really sorry you went through such a difficult time. I do hope the same is not repeated. It’s such a lot to go through. Tbh, it hit me as hard mentally as it did physically. Be proud that you’re getting through this and that you’re already started to feel a little more ‘normal’. The SCT knocks the stuffing out of us and the fatigue, brain fog etc is impossible to describe to anyone who has no idea what it’s like.
Best wishes
S
Hi all
I never imagined giving up work as it was central to my life, but I have and it has been quite liberating. There are other things to do with my time!
I decided to also take my workplace-related pension early on the grounds of I’ll health and this has given me some financial cushioning. It was stressful sorting that out amidst everything else going on, but it went smoothly.
It’s been (and still is) very difficult losing that sense of purpose and focus in my life, but I am now trying to focus on other important things, and frankly, the importance of what I did has rather paled into insignificance!
