Hi Simon
Myeloma Crowd Healthtree (USA myeloma patient group) have just last month set up a ‘chapter’ (group) for non secretory myeloma patients and have arranged their first online info session on 8 March which you may find interesting. I couldn’t post a link but you will be able to find it online with the info above.
Jane
Hello John
I haven’t got experience of private myeloma treatment, although I did consider such. If Surrey/South London is acceptable to you, I can recommend that you see Martin Kaiser at Royal Marsden. He is one of the truly world class myeloma doctors in the UK, and I believe he sees patients privately.
If you want to stay clear of London altogether I can recommend Charles Crawley in Cambridge as a myeloma haemo oncologist who treats myeloma patients privately as well as on NHS. He has good knowledge and an excellent rapport with patients.
If you are undecided in which country to live whilst being treated, it may be worth discussing this which whichever UK consultant you seek a second opinion from. New myeloma treatments are being FDA approved very regularly, but they are not necessarily widely available outside the USA. I had some contact with a patient treated (privately) in Germany who seemed to have good access to novel treatments, for example, whereas patients in Italy, I believe, do not.
I hope this helps. Best wishes.
Enjoy your wine David,I hope it kept well! 25 cycles & still going strong is definitely worth celebrating. You are a trail blazer giving hope to the likes of me, coming up behind you. It’s good to hear that Daratumumab is giving you good quality of life, and a long period of stable disease. May you be continuing to post such positive messages for a long time to come.
Best wishes Geoff. It will be interesting to hear how you get on with being at home for the early days. I felt ok (just tired, not unwell) until neutropenia hit on day 7 & think I would have done well being at home during that time.
Don’t forget to chew & suck as much ice as you can possibly manage prior to & during the melphalan infusion, it really helps recovery if you can avoid getting a sore mouth/throat (mucositis).
Hopefully you’ll be up & out in a Jiffie.
Two people in my local myeloma support group had longer after their second SCT than after their first. Like so many aspects of myeloma, we patients don’t all fit the average statistics.
I still can’t face ice or ice pops 3 years later, they just remind me of melphalan and I feel nauseous at the thought….
I found eating something first thing when I was woken up helped me to avoid nausea (breakfast was a couple of hours after being woken, by which time I did feel nausea). I kept some cheese & biscuits in my locker, odd though it seems now, it was nibbling the cheese that helped.
Hi Sachbarnes, it’s only for the day of melphalan infusion that ice is needed, to protect cells in the mouth and throat from the full effect of the chemotherapy.
I hope your dad is doing well.
Patient response during SCT (like everything myeloma wise) is varied. For what it’s worth, my WBC count, neutrophils and platelets gradually dropped until reaching neutropenia, 0, on day 7. It then took 5 days and a platelet infusion for them to start rising (day 12).
On day 0- ie before SCT, my WBC, Hb, Hct, lymphocytes, monocytes and eosinophils were all low, platelets and neutrophils were ok. On day 12 I literally felt myself getting better hour by hour, a lovely feeling! By day 100 all bloods were in normal limits except neutrophils slightly low. And they have continued to be very stable over the 3 years since- I’ve been on low dose lenalidomide maintenance. My neutrophils dipped significantly on 10mg dose so after about 6 months I reduced to 5mg dose which i tolerate well.
On day 0 I had a trace of paraprotein (less than 2g/l), since day 37 I have had no paraprotein detected.
I had a few bumps in the road during SCT process, such as catching parainfluenza virus while in hospital, and needing to be readmitted for a few days- but even at the time these didn’t feel significant as I didn’t feel really ill,or that things were out of control.
I hope your dad does well and that all his blips are little ones.
I can’t remember having dex either, but it’s possible, so much was going on and in hospital I was given quite a few drugs with little explanation unless I specifically asked what they all were. I’d forgotten all this until you asked!
Welcome jenniej
I hope that you will remain smoldering, as some ‘patients’ do for a long time.
It’s thought that all patients with full blown myeloma went through a stage of smoldering before their myeloma caused the damage that required treatment but most of us weren’t fortunate enough to have it diagnosed, monitored and perhaps diverted from becoming active myeloma. Although it will have been very hard receiving your diagnosis, it is heartening to see that people are now being diagnosed before damage is done, and that you are having treatment to prevent that damage.
One of the most common symptoms of myeloma is bone damage caused by both normal bone breakdown and bone repair processes being compromised. 85% of patients have bone lesions at diagnosis and most others develop it at some later stage.
Even myeloma patients who do not have obvious lytic lesions are therefore treated with bisphosphonates (usually zometa), at least over a 2 year period. I believe that zometa remains in the bone for up to 10 years. Now that more patients are living with myeloma as a chronic disease, it seems the optimal balance between the risks of osteonecrosis of the jaw ( the most feared side effect) and the benefits of stronger bones isn’t yet known, so it seems it is a matter for individual drs to balance risks for individual patients.
There is a blog written by a patient who has had smoldering myeloma for the past 18 years, Margaret’s Corner (on Facebook & on her own blog page). You may find some of the things she has tried useful.
Best wishes
I cannot stress how important it is to go totally overboard with ice consumption. I used ice to the extent that my vision was affected, but it worked, and that made such a difference to my recovery as I had no mouth or throat issues and minimal gut problems.
Take in plenty of underwear, button up PJ’s and other clothing so that the port is easily accessible night and day. I got up, showered and dressed every morning which was an effort at times but it made me feel better, and I exercised around the ward until I was neutropenic. Some patients have access to exercise machines which are a good idea.
I took in a cool box which I used for foods and drinks I fancied, but I had visitors daily to change the cooling blocks, which perhaps your dad can’t have.
Its worth your dad asking if the ward keep food in the kitchen, as I found that the way to keep nausea away was to have regular small snacks, esp after being woken in the morning before breakfast was served. Once nausea strikes I found it quite difficult to subdue it.
I hope your dad has a straightforward recovery. Roll on the summer!
I was 60 when diagnosed and only had a VGPR (very good partial response) to induction treatment so I was keen to have SCT. I anticipated it being a much more traumatic experience than it was. Like so many aspects of myeloma, there seems to be an extreme range of experience. Someone in my local support group literally had no side effects, whereas another person nearly died (but is still alive 9 years later).
I had my SCT 3 years ago and definitely don’t regret it as my myeloma has remained inactive since, but I did loose my hair (& incidentally found that a short hair style suits me).
I would keep options open by having stem cells harvested and stored even if disinclined to go ahead with SCT at the moment. (Some patients have been told that they cannot harvest unless they are planning to go ahead)
In USA many patients don’t have SCT after induction treatment, but they have access to the newest therapies that are not available on NHS (yet), so their experience is not directly comparable.
Hi Sachbarnes, what good news that your father’s paraproteins are no longer evident, and I’m so pleased that both he & Caroline’s husband are back on track towards stem cell transplants this month. I hope they both have straightforward procedures. It’s frightening as we have to be told everything that can go wrong, but most of us only experience a few side effects rather than the whole gammut.
Best wishes for both of them, Jane.
On the Facebook MGUS UK group there are many MGUS patients who have the type of symptoms you describe, which are also found with myeloma patients. There are many MGUS patients in that group who say their Monoclonal Gammopathy does have a bit of Significance because of those symptoms, but they don’t have the potentially life-ending features of myeloma.
Hi Carol
It’s true that some myeloma patients in the USA get more opportunities for more personalized treatment regimes and more lines of treatment than we in the UK, but this is totally dependent on them having the best health insurance plans. Those patients without health insurance or on the basic plans often cannot access the treatments we have on NHS due to untenable financial burdens, or their insurance company refusing their claim. To my mind the NHS is somewhere in the middle.
There is an Individual Funding Request system in the UK. It is a lot of work for our doctors, and the success rate is pretty low, but it’s there for patients in not straightforward situations (as I would argue high risk myeloma is) & is another approach you could take if you can identify a drug which your husband would like to try.
Never give up hope. Remember it was a patients wife who first thought of using Thalidomide as treatment for myeloma, not a doctor! (Thank you Beth Jacobsen)
Jane
