Hiya, welcome to this world of Myeloma.
I’m sorry that I don’t really have any advice as i’m lucky that my Myeloma has not caused bone damage; I have some joint pain but that’s down to arthritis.
Forums are getting a little bit old hat, which is why you probably haven’t had any replies. I suggest you join the UK Myeloma Support Facebook page. This is a very supportive group and you will reach a lot more people who are very responsive, often instantly. I am sure there will be someone on there who will have been through similar.
Good luck.
Paula
I assume this is because he has had his two vaccinations already. A friend of mine has just come home from her SCT. She was told not to have the vaccine before she went in so that she could have them afterwards, along with her other ones. Are you Shropshire? Is he in the QE in Brum? I’m Shrewsbury and had mine in the QE.
The government announced yesterday that those of us on the extremely vulnerable list will probably be having boosters in the autumn, presumably along with our flu jabs so surely he will get some protection from this. It might be an idea to ring the Myeloma UK help/info line as I am sure they will have the latest info.
If you haven’t done already, I’d join the UK Myeloma Support Group on Facebook; you will get swifter replies and more of them from a community full of experience and useful information.
Good luck. Hope his SCT goes smoothly.
Paula
Dear Clare,
I hope I can help you as I have been through very similar. I was diagnosed in January 2017 when I was 57. I was initially diagnosed with a tumour behind my right eye, which turned out to be Non Hodgkin’s Lymphoma (another blood cancer), for which I received some radiotherapy. It was during the work up for this that they discovered I also had Myeloma. Treatment for the Myeloma began as soon as I had finished the radiotherapy. I started on VTD, 2 cycles, didn’t work and light chains increased. Went on to CTD for 3 cycles and light chains increased. My local haematologist contacted a specialist in Birmingham and he suggested DTPACE, which is a hospital stay for a week with heavy duty chemo 24 hours a day. I had one cycle of this and my light chains jumped up quite a bit. At this point my haematologist ordered a FISH (genetics) test. Some authorities do this routinely but mine doesn’t. That came back with one genetic abnormality but not one that should affect treatment.
I was referred to Birmingham now as locally they didn’t know what else to do; it turned out neither did Birmingham initially. Originally the thoughts were for me to go straight to Stem Cell transplant in the hope the high strength chemo Melphelan you have before transplant would do the trick. I proceeded to have stem cell harvest and the specialist said, in the meantime, he would get a specialist pathologist to look at my bone marrow biopsies (by then I’d had three) and blood tests. The pathologist found the answer; I had CD20, which is a Lymphoma protein, attached to my Myeloma cells. This was blocking the treatment getting through to kill off the Myeloma cells. A PET scan had shown the Lymphoma had gone, but it was still lurking there in my blood cells. My specialist rang around the country to see if anyone else had had this and I appear to be the only one that they know of. Discussions were had and it was decided to give me 6 more months of a mix of Lymphoma and Myeloma chemo (Rituximab and Bendamustine) and this finally got my light chains low enough for me to have the transplant, which took place in January 2019, two years after I was diagnosed. Instead of just Melphelan for the transplant I had 5 days of a mix of drugs (Lymphoma ones) and then the Melphelan. I had a horrendous time with the transplant (another story) but it did result in getting me into remission.
There is hope and we are all different, Somme of us more different than others. It is often just a question of trial and error to find the right mix. What I would suggest, if this hasn’t happened, is that you ask for a FISH test to rule out any genetic complications that can make it harder to treat. My second suggestion is that you join the UK Myeloma support group Facebook page as you will find a lot of experience on there and you will get answers to questions more quickly. Thirdly download the Myeloma UK information for newly diagnosed patients as that is very useful at giving you a sound understanding of how Myeloma works so you can have informed discussions with your haematalogist. Good luck and please let us know how things go.
Regards
Paula
Hello,
I was diagnosed at 56 in January 2017, although they think I may have had it for a couple of years as smouldering, so I went straight onto treatment. Like you I was very fit at the time and had just been feeling a little tired. I was diagnosed because my right eye appeared to have something wrong with it; it turned out to be a tumour (lymphoma) behind my right eye. I was referred to Haematology and they did the indepth blood tests, bone marrow biopsy and PET scan. It turned out that I only had the one lymphoma but I also had Myeloma, a double whammy! I had radiotherapy for the eye to shrink the tumour then they started treatment for the Myeloma. I had three different lots of intitial treatment, none of which worked so they did the genetics test (not routine in my area) but that didn’t show anything. They then got an expert pathologist to go through bloods and bone marrow biopsies and found the Myeloma and Non Hodgkins Lymphoma had mutated together. This makes me high risk as I appear to be the only person this has happened to and they didn’t know how to treat me. Eventually they hit on a combination of Lymphoma and Myeloma chemo which got my levels down low enough for a stem cell transplant, which I had in January 2019, two years after my diagnosis. I’m still in remission and am trying to make the most of it, although I didn’t reckon on Covid-19 getting in the way this year!
I am sure your treatment will be a lot more straightforward, most people’s are. As you are younger it does make it easier to tolerate the treatments. AS you are high risk genetics it might be a good idea to talk to your consultant about stem cell transplants; I know sometimes the suggest tandem transplants or donor transplants as these can give you longer remission times. I found the info from Myeloma UK very helpful in getting my head around it all. You might also like to join the UK Myeloma Support Group Facebook page; you will find a lot of experience, support and information on there and are likely to get replies to queries quicker.
Good luck with it all.
Paula
Dex certainly gives you fluid retention. I would speak to his team again to see what they can do about that. I suggest you join the UK Myeloma support group Facebook page if you haven’t already done so as you will reach a much wider audience and thus a much wider breadth of experience. Good luck.
I don’t know of anyone diagnosed with this. I suggest you join the UK Myeloma support group Facebook page as you will reach a much wider audience on there.
Obviously once you know what chemo you will be on between everyone we will have experience of all types. Good luck. You are lucky to have reached the point of diagnosis so quickly.
Regards Paula
If you haven’t done already I suggest you join the UK Myeloma Support Group Facebook page. There’s a file on there regarding travel insurance. I have found it an invaluable support and source of information. I think I used Freedom Insure.
Paula
Hiya,
I was 57 when I was diagnosed and my daughter the same age as you. I know she really worried, especially as I had a double cancer diagnosis of both Myeloma and Non Hodgkin’s Lymphoma. It’s scary at first but you learn to live with it. My journey started with radiotherapy too followed by chemo. I’ve had four separate and different sets of chemo as nothing was working; don’t panic as this is unusual! Most people respond to their initial induction treatment, usually Velcade, Thalidomide and Dex (VTD), which they have for six months and then they move on to stem cell harvesting and a stem cell transplant. The information on this site is excellent and will help you to understanding the complex nature of this condition; there is an info guide on VTD and the Info pack for newly diagnosed patients is really good. Being well informed takes some of the worry away I find. It has taken me two years to get to stem cell transplant (I’m currently expecting a call to go in at any moment), longer than most but I am hoping it will give me a period of remission where life can return to more or less normal. Please don’t think of this condition as terminal, it isn’t as it’s treatable and there are many people who have lived a very long time since diagnosis. Treatments are improving all the time and new ones are being discovered; there have been big strides forward in the last 15 years and this is set to continue.
You may find it useful to join the UK Myeloma Support Group Facecbook page if you haven’t already; it’s open to both carers and patients. I have found it useful; there are many knowledgeable and experienced people on there who will answer any questions you may have quickly.
Paula
Hiya,
Yes I have had to deal with two separate diagnosis. I initially went to the GP back at the end of 2016 because my right eye seemed to have moved forward more than my left. My GP got me seen at the hospital the next day, scans and a biopsy followed and I was given a diagnosis of Non Hodgkin’s Lymphoma. More scans and a bone marrow biopsy followed and through this it was discovered I had Myeloma as well; two diagnosis within a month. As the NHL was only in that one place they decided to treat the NHL first with a course of radiotherapy and monitor my Myeloma levels during this time to see if they were rising. Unfortunately my light chains rose over this time so as soon as I had finished the radiotherapy I started on chemo for the Myeloma.
Myeloma is different in all of us but in me especially so. I had VTD, (this is the one you describe) CTD and DT PACE (three lines of treatment), none of which worked for me. After genetic testing and an expert pathology report they found that I still had NHL in my blood and an NHL protein had attached itself to my Myeoma cells, Apparently I am the only one this has happened to. The NHL protein was blocking the treatment so I have since had some Lymphoma chemo which has managed to get my levels down, not as low as they would have liked but better than anything else. I am now waiting for a stem cell transplant which should be this month.
Good luck with it all. This site gives you all the info you need. I have also found the UK Myeloma Support group on Facebook very helpful and supportive. If you join it you will find an awful lot of very knowledgeable people on there who will happily share their experiences and you get almost instant replies.
Regards
Paula
Dear Rosie,
Regarding the stem cell transplant if you want to get quick responses to your questions I suggest you join, if you haven’t already, the UK Myeloma Support Group Facebook page; there are plenty of people on there that will be able to answer your questions and tell you how the SCT was for them. I was diagnosed at 57 with both Non Hodgkin’s Lymphoma and Myeloma in February 2017. I’ve had 18 months of different types of chemo as I didn’t respond to any of them; my Myeloma has been a bit of a problem for my consultant! Finally they have hit on one that works so I will hopefully be having a stem cell transplant later in the year. I must say I’m apprehensive as there’s no getting away from the fact that it’s risky and unpleasant with a long recovery period, however it is always our best chance of remission. You may find a call to the Myeloma Info line, where you can talk it through with professionals useful.
Every chemo is different and effects us all in different ways; I’m on my fourth combination and have found some are easier than others to cope with but I didn’t like Cyclophosphamide either.
If she is finding it difficult to eat then I would ask for a referral to the nutritionist at the hospital. At the beginning of my treatment I lost weight fast, which was worrying as I have always been thin. The nutritionist gave me a load of high calorie drinks (1,000 calories in each) which I found helpful. She then did a referral to my doctor who continued to prescribe them for me for a couple of months.
Has she got some anti sickness? I find Ondansatron works best for me. If the anti sickness isn’t working don’t put up with it. One of the drugs I was on made me feel very sick, I put up with it for a few days until a frien, who is a nurse told me to ring my team. I made the call and they had me in for some intravenous anti sickness which worked well. This was then built in to my treatment so that I went back in a couple of days after the chemo (when the sickness always got worse) to have this. Make sure her team are very aware of the issues she is having. As a race we are prone to minimise things and think we have to put up with it, we don’t!
Are you in touch with Macmillan? They are often very useful to have on board to get everything moving, to provide counselling and someone to talk things through with. This is a rotten thing to have and if you struggle mentally life can seem really draining for all of you. Perhaps both her and the family would benefit from going to a support group if you have one locally? We don’t have a local one but we did go to a Myeloma Info day last year; my husband said he found it really useful to talk to other ‘carers’ and to feel that we weren’t the only family to be in this situation. We are all affected in different ways; I’m a fighter and just get on with it as I can’t see the point in feeling sorry for myself but I have had friends who have had cancer and found it very difficult to cope with mentally.
You don’t say if she lives alone. Are there people that could visit regularly and take her out if she feels up to it? My friends have been fantastic taking me out, sitting with me through chemo and visiting me in hospital when I was in for a week. I also find that if I am out and about doing things I don’t feel as sick as I’m distracted. If you are sitting at home on your own, doing very little it can be easy to focus more on how bad we feel.
The best of luck. Remember you are not alone.
Paula
Tell her not to panic. I have had 2 cycles of VTD, 3 of CTD and DT PACE. I lost my hair after the DT PACE at the end of January. It’s growing again and is now about 1.5 cm long. I am to have stem cell harvesting (as Mick says above) on Monday followed by a stem cell transplant in May so my hair will come out again after they give me the high dose chemo (Melphelan) before giving me my stem cells back. This is the link to a video which explains what happens https://www.myeloma.org.uk/videos/high-dose-therapy-and-autologous-stem-cell-transplantation/
There is a good Myeloma UK info pack on it to0: https://www.myeloma.org.uk/information/myeloma-uk-publications-list/myeloma-treatment/high-dose-therapy-and-autologous-stem-cell-transplantation-infoguide/
It sounds scarier than it is but it isn’t a walk in the park either. The consultant and cancer specialist nurses will talk her through it or she could ring the Myeloma UK info line where there are lovely caring staff who are very knowledgeable.
Most NHS trusts give you some paperwork for a free wig. Tell her to get this organised now as it can take a while to get sorted. A company comes out to my hospital and you make an appointment with them; they were lovely and took great time and care over finding the ‘right’ wig for me. I had already lost my hair by then but it helps for the wig company to see you with hair so they know how you usually wear it, colour and cut etc. That way, if she’s really worried about it she will already have her wig before she loses her hair. I’ve had lots of compliments about my wig; they’re so good now. When I went to the doctors the other day a lady said she loved my haircut; I choose whether to just say thank you or admit it’s a wig, depending on how I feel!
Personally I’m not bothered about about being bald and so I don’t wear my wig all the time. I have African friends so they taught me how to do head wraps which make a change. When I go out my friends are used to seeing me bald, or with a head wrap or the wig, depending on the weather and my mood!
When undergoing stem cell transplant it’s best to shave your hair off before you go into hospital; that way you avoid it all coming out once in hospital, which is much more difficult to deal with and happens at a time when you feel quite ill.
I write a blog about my experiences and have written about hair loss a couple of times. If she would like to read them this is where to find them. mymyeloma.wordpress.com I enjoy writing the blogs and many of my friends read it; it stops me having to explain it all the time and is a way of getting my feelings out.
Remind her that she has the best chance of remission for a while with a stem cell transplant.
Good luck.
Paula
Glad I could be of help. Good luck my love.
Paula
They are right, Myeloma is rarely staged as it manifests differently in all of us. There is an international staging system but doctors don’t often use it. http://www.cancerresearchuk.org/about-cancer/myeloma/stages
I’m no expert but I don’t think her paraprotein level would be that high, it sounds to me that she may have Light Chain Myeloma. I have this; numbers of Free light chains are often in the thousands, and I don’t really have much paraprotein. My light chains on diagnosis were around 2600. Myeloma is very complicated and full of science so I’m not surprised they don’t really understand it. I’m 58 (quite young to have this) and have my head around it all but I’ve had to do a lot of reading and have lots of discussions with my consultant, especially as mine is not straightforward.
Your mum can ask for a print out of her blood results or get the consultant to write them down. I suggest you order the Patient Diary from Myeloma UK. There is a section in the diary for blood results and she could ask the consultant or nurse to fill in the results for her. There is also a table in that section which tells you what normal results are so you can compare them with your own results. I find this very useful. There are also sections in the diary where your mum can record how she feels on a daily basis, which is useful to take to appointments and her treatments where they will ask her how she has been before she has the next treatment.
If you haven’t already downloaded the Info Pack for newly diagnosed patients from Myeloma UK then this is also a good place to start when it comes to understanding the complexities of Myeloma; I was given it upon diagnosis. It explains about Light Chain Myeloma and paraprotein. There is also an Info guide on VTD.
Ask if she has had a FISH test, this will also highlight if she has any chromosomal differences, which can affect treatment. The Genetics and Myeloma Info guide explains all about this.
I belong to the Myeloma UK Facebook page too. You can join it as a carer or patient; it’s invaluable for getting info and people’s experiences fast.
Good luck with it all.
Paula
The hereditary component is very slight I believe. The Myeloma Introductory booklet states:
..people who have a close relative (parent, sibling, child) with myeloma are up to twice as likely to get myeloma than the general population
The Myeloma Info pack states:
There is a slight tendency for myeloma to occur in families. Although rare, this suggests there are inherited genetic factors in myeloma. However, these alone are not enough to cause myeloma but may make an individual have a slightly higher risk of developing myeloma – other environmental factors also need to have an impact before it develops.
Although close relatives are twice as likely the overall risk is small anyway so although it sounds bad it amounts to a small risk. I am sure the Myeloma Info line would help you talk it through. I think the most important thing is that children are aware of it so that later on, if they are feeling unwell they can ask the GP to do a Myeloma blood test.
Good luck with it all.
Paula
I’ve signed the petition Gerry and shared it on the UK Myeloma Support group Facebook page.
Paula
