Hi Sachbarnes
Did you find a way to get MRD testing? It’s something I tried to look into, and I would still consider doing for myself, but I did not identify anywhere I could get it done in UK.
Jane
Hi Laura
I was diagnosed almost 4 years ago at age 60, and it’s taken a long time to really understand that “treatable” is more significant than “incurable” in myeloma. I had feared that I was on a sort of slippery slope health-wise, but that really hasn’t been the case. During treatment I was quite fatigued, lightheaded and lacking in energy, but now my disease is not active, ” in remission” I have a perfectly acceptable quality of life, I can do anything, but perhaps not quite everything- that is I have to pace myself. But perhaps that’s just my age.
Myeloma is a particularly individual disease with different symptoms, challenges & responses, so one person’s experience is not necessarily going to be your father’s, but for all of us, the pace of drug development is incredible, treatments that extend life to the extent that for some of us myeloma will be a chronic disease like diabetes rather than a death sentence.
It’s important to try to keep hope alive and keep worry for the times you have something specific to worry about.
Unlike Kevin, I’ve found it helpful to “know the enemy” and have learnt alot about myeloma. There isn’t a right way of dealing with this diagnosis, just a way that works for us and for our families. Hopefully you will have your father by your side for a long time, perhaps a very long time. I know someone who has dealt with this disease for 18 years (& lives life to the full) and there will be many more of us diagnosed in recent years, who have access to recent treatments, who will still be around in the 2040s.
While I would never have wished for the diagnosis, I can say that good family relationships have strengthened and poor relationships have withered in my family since my diagnosis. Your love, care and concern will support your dad and your relationship will grow even stronger.
With best wishes, Jane
Hi PK
I think you may be most likely to have helpful responses if you start your post in a thread of its own. People may be unlikely to look in a thread about importing lenalidomide maintenance now that it is NICE approved.
You raise some very interesting questions, I don’t personally know the answers but would be interested to find out what others know.
Best wishes
Jane
I hope your appointment was reassuring, and that you’ve been reassured that you will be having regular, predictable appointments from here in.
Hello Carol, what an awful situation to be in.
If I was faced with this I would seek advice from Brian Durie of the International Myeloma Foundation. Other possible sources of information (but which may need your husband to upload all of his medical history) are Healthtree (Myeloma Crowd) and Tony Blau at All4Cure. (He is a haematologist with myeloma).Both of these are myeloma patient databases which aim to help identify treatments which have been successful in patients with similar myelomas.
I know another patient who is in a similar predicament to your husband has just started Blenrep as compassionate use although it’s not NICE approved yet. His consultant had to go through a few hoops for this, but GSK the pharma company are supplying it, I believe without charge. Myeloma UK may know more about getting drugs under this scheme so that you could then ask the doctor to pursue this, and myeloma UK should also know if there are any suitable trials underway yet.
Please do let me know how you & your husband get on. Thinking of you
Jane
Hi Loneowl
What a lovely idea. I’m sure anything will be really appreciated. I agree with Steve that snacks are very welcome, although many of us have odd tastes and desires for food after transplant, so variety may be a good idea! I couldn’t concentrate that well so ‘light’ reading matter & puzzles. I found I slept quite a lot, so didn’t do crafty type things until I was back at home. Socks, pretty scarf, someone made me a lovely shawl which I used a lot.
Hi Normant
The critical question seems to me to be whether or not you & your doctor are heading towards stem cell transplant. If patients are intending on having SCT they normally do only have 4-6 cycles as you suggest, although the aim is to reduce the myeloma burden as far as possible so sometimes additional cycles are given if the myeloma level is still reducing significantly ( ie paraprotein or light chain level is still reducing). However if you are not heading for SCT for whatever reason, the plan may be for you to continue on VTD treatment long term to keep your myeloma at bay. Perhaps you need to have a discussion with your doctor about what the best plan is for you. I hope whatever that is, that your myeloma is getting under control.
I used lenalidomide during induction treatment and early on had a fairly widespread and alarming rash in my torso. My consultant gave me an extra week between cycles but was confident that it would go, which it gradually did (although it took about a month to go completely). I continued on lenalidomide and it didn’t come back. I’ve been on low dose lenalidomide maintenance since SCT 3 years ago. I had to reduce the dosage due to low white blood cell counts, but not because of skin rash.
So good to hear ds2021. I hope your knee pain isn’t anything serious.
Hi Caroline & Sachbarnes
I read this and thought of both of you.
On an international forum a very knowledgeable person with MM that I’ve followed for several years said that her MM was very slow to respond and her Dr tried several different drug combinations but even so it took 2 years for her paraprotein level to get to Partial Response (which I think is defined as 50% of the level at diagnosis). She has never achieved a Complete Response, but is still at that stable PR level, on a low drug dose, 11 years later…..
It just demonstrates how individual our myelomas and our responses are.
I had a Complete Response to SCT (ie no paraproteins/m spike apparent) and have stayed like this since, almost 3 years, but I am still having complete sets of blood tests and telephone appointments every 2 months. I’m having lenalidomide maintenance which has caused my WBC & neutrophils to get low so my dosage was lowered 2 years ago & I presume I’m being kept an eye on for that reason.
I feel that I am getting much better care than you are, even though I’ve been through SCT already,and that was successful. I too would be worried if I was not having the full range of tests. Having said that, it’s very positive that you had a Complete Response without needing the SCT, and in USA some (perhaps many) MM patients in your situation don’t have SCT, leastways not for some time after finishing induction treatment. Your Dr should have a plan, and be communicating with you so that you can trust her implicitly and not need to worry about your myeloma.
As a first step I would write to her asking to have complete blood tests repeated, and for a follow up telephone appointment. I know it’s not nice making a fuss, but there are times when we have to.
Do update us on what happens next.
Hi Jiffie, I think it’s inevitable that myeloma patients heading into SCT are anxious. We’ve got accustomed to & dealt with the induction treatment, when SCT was sometime ahead. We’ve been through an arduous process, but rather than that being the end, it’s only the beginning of the next process. We hear horror stories about SCT, and our medical teams have to tell us anything and everything that can go wrong.
It’s right that we know the risks and know what problems to watch out for, but the reality is that while most myeloma patients have some of the many side effects during SCT, very few have lots of those side effects (and a very few have none at all). Most of us have just a few, and most are later willing to go through the process again.
Once you are over the hurdle of SCT, in a few short weeks, you are likely to have an increasingly good quality of life. Myeloma can start to play a minor role in your life, and you can get on with things you enjoy doing, COVID permitting.
Statistically SCT does extend remission times for us, particularly now that low dose maintenance lenalidomide is available.
I really hadn’t appreciated how ‘normal’ my life, my energy levels and general health would return to after SCT, and for me it was a remarkably quick process. Even having contracted a parainfluenza virus in hospital during SCT, I felt significantly on the mend by day 37 and remarkably well by day 60 and was abroad on holiday on day 102.
It’s inevitable that you will worry,but try also to keep hope alive. It’s only this side of SCT that I’ve really appreciated the term “treatable” as it relates to myeloma , it truly is more significant than the “incurable” tag.
With best wishes for the final part of your induction, for your cell harvesting and for the stem cell transplant process itself.
I too am pleased to hear of your blood test results today. I’m not a doctor, but if my experience is anything to go by, my ESR, CRP, LDH and various aspects of the full blood screen were definitely out of normal range when I was diagnosed. I know that your anxiety won’t recede entirely until you get all the screening results back, but try to focus on the positivity of these results.
May 2022 get easier, and the reason for your knee pain prove to be more benign.
Hi Jeanrose, not everyone has SCT and it isn’t essential to our wellbeing. In the UK common protocol is to have SCT if possible, but some health systems, such as USA, are moving away from it. Our overall survival times are statistically the same whether or not we have SCT, so the main benefit to us as patients is having a longer first ‘remission’ period. Some patients used to like having a drug free period after SCT, whereas without SCT your husband is likely to be on continuous drug therapy, although it’s now known that even after SCT patients do better on low dose maintenance, and lenalidomide was recently approved for this purpose.
I haven’t heard of anyone with myeloma whose condition/symptoms didn’t improve (totally or partially) once their myeloma was under control and once we’ve acclimatized to the drugs.
Keep hope alive, your husband is likely to get a lot better.
It’s natural to look things up on Google, but with topics like myeloma it is very misleading. Myeloma treatment is a fast changing area of medicine, but much of the online information dates back 5, 10, 20 years and some even longer, when prognosis was bleaker. Not that Cancer is ever an easy diagnosis to face.
What an awful Christmas period you have had with these tests hanging over you, made worse because you’ve had to wait longer because of the holiday period.
Although generally I have had the most wonderful care from my haematology team, I too have received some thoughtless and (in hindsight) unnecessarily worrying communications from some doctors who should have known better or been more considerate. Getting the copy of the letter just before Christmas when you couldn’t do anything other than worry, falls into that category. I feel for you. I hope the tests go well and you get the results back quickly.
