I’ve just answered your other message. Just to say I made some friends, online and in my local area, from the UK Myeloma Facebook page so you might want to join that. Some areas also have local support groups. Myeloma UK will have a list of them.
Good luck
Paula
Hi,
Welcome to the club nobody wanted to be a member of! I was only 56 when I was diagnosed at the beginning of 2017. You sound very upbeat; it’s good to remain positive if you can. I’m like you and take everything in my stride really.
Yes the steroids make it difficult to sleep as we take them in such high doses. You also get a ‘come down’ when they wear off, which isn’t pleasant. VTD is the usual chemo to start you on and works very well for most people. You don’t say what type of Myeloma you have. Some are measured by paraprotein and others by free light chains. I have lambda lightchain Myeloma. Mine is hard to treat so I spent two years on chemo before I had a stem cell transplant in 2019; I’ve been in remission since. Most people have 6 months of chemo and then straight on to stem cell transplant. Watch out for Peripheral Neuropathy on VTD. If you get it speak to your team.
Good luck with it all. If you feel you would like to have support from like minded people then you might like to join the UK Myeloma Facebook page; it’s very supportive and full of knowledgeable people who have been through it.
Paula
Dear Melanie,
Try not to be scared. I see he has been referred to a haematologist. They will carry out further tests to determine if it is Myeloma. I was only 56 when I was diagnosed. There are lots of treatments out there now. Remember it’s not curable but it is treatable and many of us manage a fairly normal life.
If he is diagnosed you will find support on her and you may find it helpful to join the UK Myeloma Facebook page; it has many members and it very supportive.
Paula
Right, because he’s extremely clinically vulnerable he will get a third Primary dose of Pfizer and then in 6 months he will get another booster, however if he’s having a SCT he won’t. He can book the 3rd Primary dose in the normal way but you need to ask when he has it for it to be put down as his third primary dose. I had mine last week along with others that were there for their booster jabs but mine was just called something else.
SCT wipes your system; like wiping a hard drive, so any natural immunity you had to anything is gone. 6 months to a year after SCT you have to have a lot of immunisations, including Covid, all over again.
Hope this helps
Paula
Hello,
May I suggest you download and read the Myeloma UK booklet Info pack for newly diagnosed patients. It really helps you to get your head around things and is full of everything you need to know.
You may also like to join the UK Myeloma Facebook page; it’s a very friendly group full of people with a wealth of information. I find it very useful and supportive.
Good luck
Paula
Hi there,
Unfortunately once you get Peripheral Neuropathy it rarely goes away. Velcade is a big culprit for causing this but so is thalidomide and as Lenalidomide is part of the same family, I’m guessing this is why it’s getting worse. Mine went up to my knees too, however when I stopped treatment I now only get it in my feet and hands.
My advice is to talk to your team now to see what can be done but you may have to accept it.
You might like to join the UK Myeloma Facebook page; it’s a very friendly group with a wealth of experience. That way you will get lots of answers to your questions very quickly.
Good luck
Paula
Hi,
I claimed PIP as soon as I came out from SCT. I had a very tough time with my SCT as I caught RSV so was in hospital 8 weeks.I put on the form that I was immune compromised so needed a home visit and they came out about a month later. This was pre covid and I know they have about a six months backlog now and were only doing telephone appointments. I only got the daily living element at the standard rate but not the mobility element so I get £60 a week. Basically if you can walk 20 metres you don’t get it; they’ve got very tough.
You get a month to return the form so it might be an idea to ring up for it in the next few days. Once he has had the SCT you start feeling rough very quickly so you will know what he can and can’t do. Remember to describe the worst possible day. When I came out of hospital I could just about stagger the few steps to my ensuite, I didn’t have energy for a shower initially then later I could only do it with help and sitting down on a shower stool. I couldn’t walk the length of the corridor to get to the living room (we live in a bungalow) and I certainly wouldn’t have been able to climb the stairs. I didn’t eat and I wouldn’t have been able to get my own food anyway. I had bad nausea and was often sick.
The form is not straightforward to fill in so if you can get someone to help you or use all the info you can find on the internet. Mention all the aids he needs like a shower stool, a perching stool to prepare food, a stick to walk with etc. I also wear a hearing aid and use a portable hearing loop. We have a home automation system so I can answer the door from my phone and see who it is then let them in; I can’t get to the door quick enough. The door bell rings through speakers in the ceiling in every room otherwise I wouldn’t hear it. These are all the things they want to hear. If awarded it’s backdated to the day you ring up for the form.
Best of luck with it all.
If you haven’t done already you may like to join the UK Myeloma Facebook page. It’s a friendly group and you will get answers to queries much quicker than using this forum. Plus there is a wealth of experience and knowledge on there.
Regards
Paula
Dear Panda,
The PETScan will show up any Myeloma lesions and any areas of Lymphona. It will give them a better picture of the lymph nodes on your chest and any others you might have elsewhere. It is really rare to have both so if you have you will be joining an exclusive club, although I appear to be the only one where they have mutated together.
They will send the results of the PETScan through to your consultant, mine only took a couple of days. My consultant showed me the scan; it’s multicoloured so they can instantly see any problem areas.
Let me know how you get on.
Paula
Hi Panda,
I’m the person Mulberry was talking about. I had a dual diagnosis of Non Hodgkin’s Lymphoma and Myeloma, so yes you can have both at the same time! It started with me going to my GP as my right eyeball appeared to be moving forward. After investigations by Opthamology, and a biopsy of the ‘lump’ behind, I was then referred to Haematology as NHL was diagnosed. I had a PETscan which showed that the NHL was isolated to my right eye and a bone marrow biopsy. The PET scan showed that the NHL was restricted to just the one tumour behind my eye, a rare place to have it, but nowhere else, however the bone marrow biopsy showed that not only did I have NHL, I also had Myeloma. The Tumour was zapped with radiotherapy, which thankfully shrunk it. I then went on to have chemo for Myeloma. To cut a long story short, I had three lines of therapy, which didn’t work and a FISH test to see if I had any dodgy genetics, which I didn’t. They were at loss as to what to do and initially were just going to go ahead with Stem Cell Transplant to see if that worked. I had my cells harvested and while this was going on the consultant got a specialist pathologist to look at my bloods and bone marrow biopsies. They found that I had CD20 (a lymphoma cancer protein) attached to my Myeloma cells and this was blocking any Myeloma chemo getting through. In other words the NHL and the Myeloma had mutated together. The consultant rang round the country to see if anyone else had come across this but no one had so it appears that I am unique in that respect. He discussed my case with several specialists and the consensus was that they would try Retuximab (which targets CD20) and Bendamustine, which is a chemo drug used against both Myeloma and NHL. I had 6 months of it and it worked getting my levels low enough for a SCT. Two years after I was initially diagnosed I had my SCT. They did it the ‘Lymphoma way’ rather than the Myeloma way as the consensus was this was the best approach. (It just means 6 days of chemo then the Melphelan at a slightly reduced rate). I’m in remission now (2 and 1/2 years) although I’ve had a few infections this last 6 months and my appointment is due in two weeks so we shall see what the bloods say then.
You asked about a PETscan. It’s like a CT scan rather than an MRI, but you have some radioactive substance injected into a vein about an hour before you have the scan. This makes your scan light up in bright colours! It allows then to see if there are any areas of concern much better than a CTscan. It’s really expensive so not all hospitals have one. I had to go to a hospital an hour away from me.
Good luck with it all and let me know how it goes.
Regards
Paula
Dear Gizmo,
I really don’t see what being female and younger has to do with it. Yes slightly more men have Myeloma and you are young to have it but increasingly younger people are being diagnosed with it. The problem is that many GPs know little or nothing about Myeloma and they may only see one or two cases in their time as a GP. So many people go through unnecessary waiting times and many visits to their GP before they are diagnosed. If you are experiencing bone pain and your neutrophils and white blood cell count is below normal levels then I would think this warrants an urgent appointment.
If they have been tracking your bloods over the last year do you have copies of these. If not I’d ask for them. It could be that they have remained quite stable, in which case that’s why they have diagnosed MGUS and not referred, but if they are increasing then this is a worry. Have they been tracking paraprotein and light chains? If these are increasing then you would need an urgent referral. In my area you would be referred with MGUS and Haematology in my local hospital would do the monitoring to see if you go on to develop Myeloma, not everyone does.
Myeloma is such an individual cancer. If you are experiencing bone pain then it could be that you have lesions. There are certainly people who have had bone issues yet their blood results haven’t been too bad. An MRI or at least a CT scan is needed to show whether this is the case or not.
I would push to get your blood results and ask about paraprotein/light chain levels. You could get a private MRI done; my husband did once to speed things up (not for Myeloma) and it didn’t cost a fortune.
If you haven’t done already I suggest you join the UK Myeloma Facebook page. It’s very supportive and there are people on there with more experience and knowledge than me.
Good luck
Paula
Hi Susie,
I don’t know if you are a member of the UK Myeloma Faccebook page? It’s a very supportive, friendly group and I find it very helpful. You will get answers to your questions very quickly on there. You will reach a much greater number of people and probably some who have experienced something similar; there is a wealth of knowledge and experience amongst the membership.
Good luck
Paula
Dear Panda,
Welcome to the group we never expected, or wanted to be a member of! I’m also 61 but was diagnosed four years ago. As has already been said there are lots of effective treatments for Myeloma these days; yes it’s not curable but it is treatable and there are lots of people out there who have lived for many years. It is tough when you are dealing with this alone. You are entitled to some counselling. If you feel this would help ask your team. Macmillan can be helpful too in some areas. My advice is to read up as much as you can from the Myeloma UK info as it really helps you to have informed discussions with your consultant. Have a look at the Infopack for newly diagnosed patients and Myeloma – An Introduction. You can download them just look under Publications on the site.
It’s good that they are doing a FISH test to determine if there are any genetics that will impact on your Myeloma; some areas don’t pay for this routinely. You don’t say what your blood results were so without knowing the levels of paraprotein it’s difficult to guess whether you will be on watch and wait or whether they will start treatment.
As regards the anti body test, it appears that some areas are doing them on request but others are refusing, presumably due to funding. I have an appointment in a couple of weeks and I will be asking but I doubt my area will do it.
Myeloma causes our neutrophils to drop which lowers our immune system making us very vulnerable to infection and more difficult for us to fight it. For example, my husband brought a cold home about a month ago, he and my son had just a cold and sore throat but I had a temperature of 39 and ended up on antibiotics for a chest infection. (We had Covid tests to check first of course).
Most hospitals don’t ‘stage’ myeloma as it’s a very individual disease and manifests differently in all of us. The staging doesn’t really help or mean anything. It’s possible that they told you it is stage one just to inform you that it’s in its early stages.
If you start on treatment it’s likely to be 6 months of chemo (Usually VTD) followed by a stem cell transplant. The booklets I have suggested will give you all the details; you may have been given these by your CNS of course, I was.
You say money is of concern. Talk to Macmillan and they will tell you what you may be entitled to. As you have been working until recently, you may be entitled to contributions based Employment Support Allowance; get your GP or consultant to sign you off sick if they haven’t already done so. Later on you might be able to claim PIP; I did this just before I went in for stem cell transplant and was glad I did as I was very incapacitated afterwards for quite some time.
Good luck with it all and stay positive. You may like to join the UK Myeloma Support Group Facebook page. It’s a very friendly group and there’s a wealth of knowledge and experience on there. I find it very helpful and supportive.
Paula
They don’t tend to ‘stage’ Myeloma. It’s a very individual cancer and affects us all differently. For example, some people have bone damage and others don’t, some have kidney damage and others don’t. Try not to dwell on things. We are all different and it affects us all in different ways. I found it useful to get my head around it all so that I could have a more informed discussion with my consultant; the booklet from Myeloma Uk for newly diagnosed patients is very helpful and will give you a better understanding.
I had two years of treatment to get me to stem cell transplant (nothing worked) but I am unusual; most people have 6 months of initial treatment and then have a stem cell transplant using your own cells. I have been in remission since I had mine 2 years ago. Many people have been in remission for a very long time; it’s not the same as 20 years ago when there were only on or two treatments available. If you need someone to talk to, many hospitals have counselors on site for cancer patients; ask your specialist nurse.
There is a very supportive Facebook page you might like to join where you will get lots more replies than on here. Its called the UK Myeloma Support Group.
Good luck
Paula
I have never been told not to, as long as you know which one is which. I found it useful to have a morning and night box so I didn’t inadvertently take the wrong one at the wrong time.
Regards
Paula
I always think it’s harder being the one watching someone with this cancer than the one with it. I know my husband and daughter found it very hard when I was in hospital for 8 weeks (stem cell transplant that didn’t go well) followed by 6 months of being totally useless at home. Like you, I am the tough one in my family so it’s usually me that takes control. Fortunately my daughter has inherited my toughness and took over. My son ended up having a breakdown as his girlfriend left him at the same time as me being extremely ill and he couldn’t cope.
If you are struggling do try and get some counselling from your GP. Sometimes it’s hard to ask for help I know. When you are seen as the tough one nobody asks you if you are OK.
I’m sorry but I don’t have any experience of Panobinostat to offer you.
These Forums have become a bit old hat, which is why you haven’t had much of a response. I suggest you join the UK Myeloma Support Group Facebook page; you can join as a carer. You will find it a very supportive group with a wealth of experience. Someone on there will have been through similar and will have taken Panobinostat. You will get answers to any queries swiftly, plus a great sense of support from other carers.
Good luck.
Paula
