Thanks Gerry.
It does seem really tough doesn’t it. I have had three chemo treatments, all of which have failed to reduce my light chains significantly. Daratumumab is an option for me, but like you I could so easily have missed it. The only reason I didn’t start on another option is they were not sure what to try and have done some cytogenetics to inform further treatment; the results should be thorough this week and I see my consultant next week. Hopefully they will change their minds soon; you really would have thought it would have been fourth line or more.
Good luck
Paula
Perhaps ringing the Myeloma UK Information line would help.
Paula
I can’t help you on this one I am afraid but you will reach more people who have loads of information and experience to share if you join the UK Myeloma Support Group Facebook page; it’s where I turn if I need information and support. It’s open to both people with Myeloma and their carers.
Good luck
Paula
I would ring the Myeloma UK help line. Myeloma is a very individual cancer and we are all affected differently.
Read the newly diagnosed booklet (link below) as this will help you understand more about the condition. Myeloma isn’t curable but it is treatable.
I didn’t get on well with my father either so I have some idea what you are going through. I would read your way around the great info on the Myeloma UK web site. The consultant may have started him on Initial treatment (read the info sheet on this). It depends what type of Myeloms he has as it’s so individual. I have light chain Myeloma so how high my light chains are is important and this can effect kidney function. For other types the amount of para protein is more important. Read the newly diagnosed booklet as it help to explain everything. He will have had a bone marrow biopsy to enable diagnosis and this will identify the percentage of cancer cells in the bone marrow. If he’s had back problems then perhaps he has some lesions.
Here are the links:
I hope things work out for you.
Paula
I agree, it is bad not to have someone go through them with you. Do you have a consultant appointment soon? If not I would ring and ask for one.
Now I’m not exactly sure but I think that the 4% relates to abnormal plasma cells in your bone marrow, if so then this is quite low. I had 11%/12% when I was diagnosed. I think anything over 10% means you need treatment to start, although I think that varies regionally. That might be what they mean by no excess of plasma cells. Best to get it checked out.
Just found this on the Myeloma UK website:
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>A bone marrow biopsy is a fairly invasive procedure and will be carried out by skilled specialists. It involves putting a needle into the bone (usually the hip bone) to get a small sample of the bone marrow (this sample is sometimes called an aspirate); the procedure is carried out under a local anaesthetic with or without sedation.</p>
<p style=”box-sizing: border-box; margin: 0px 0px 17px; padding: 0px; font-size: 13px; direction: ltr; font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; line-height: 19.5px;”>This sample is then examined to count the number of plasma cells present in the bone marrow: normal bone marrow has less than 5% plasma cells; bone marrow in myeloma patients may have between 10% and 90% plasma cells. A better indication of the number of plasma cells is gained by doing a ‘trephine biopsy’, which means taking a small core of bone along with the marrow inside.</p>
Good luck
Paula
I had radiotherapy as, along with the Myeloma I also had Non Hodgkin’s Lymphoma which manifested as a tumour behind my right eye. You can’t feel the radiotherapy as it’s being done but you will hear a lot of noise from the machine. I had bursts in three different places so it moved around me and makes a noise when it moves. It’s not like an MRI where you move through the machine. You lay on a similar thing but the machine does all the moving. You will see lights.
Side effects wise it did seem to affect my appetite and I did lose some weight, which I put back on over subsequent months. The only other side effects I had were headaches, which stopped when the radiotherapy stopped, but that may be particular to me as mine was to the head.
I did feel a bit tired afterwards but this was minimal and I certainly didn’t feel any pain other than the headaches I have described above.
Your last question is it depends on you and your individual circumstances. I had it every day for two and a half weeks. Two weeks later I had a consultant appointment and learned it had shrunk it.
Hope this was helpful to you.
Paula
I had PN too with Velcade. VTD didn’t work for me so I only had three cycles but the PN has stayed with me. Rcently I have had DT PACE with large doses of Thalidomide, which has increased the PN. I mainly get it in my hands and feet. I find that being on my feet helps, rather than sitting. My hands bother me more as even typing can be difficult sometimes. I deal with it mainly by distracting myself and keeping as busy as I can.
I suggest you join, if you haven’t already, the UK Myeloma Support group Facebook page where you will reach a larger audience and receive more answers to your question.
Paula
I personally don’t take it but I know some people do. It can be difficult to establish whether it’s the drugs that are working or the cannabis oil. Post a question on the Myeloma UK facebook page and there will be people that will give you links. Talk to the team as they may have views on it. I guess it’s a personal decision but whilst on treatment I would be concerned it could interfere with it.
If he’s having back pain he will probably have an MRI, CT etc to see what’s happening in that area to inform the treatment plan, if he hasn’t had that already. Ask questions as Myeloma can affect the bones, especially the spine.
If he’s having Thalidomide, a steroid (dexamethesone) and an injection this is most likely Velcade. This treatment is know as VTD, the most popular form of Initial Treatment. Read this and it will tell you about it.
Velcade®, thalidomide and dexamethasone (VTD) and myeloma Infoguide
This is the link to the general info for newly diagnosed patients.
This is the link for the carers pack.
We are all thinking of you.
My heart goes out to both him and you; he’s so young! This is supposed to hit people over retirement age, I was told I was young at 57, but it seems to be getting younger and younger.
I was diagnosed in January 2017 with Non Hodgkin’s Lymphoma, which was fortunately isolated to one tumor behind my right eye. A month later I was diagnosed with Myeloma. I didn’t start treatment until May as they wanted to deal with the Lymphoma first so I had a series of radiotherapy sessions.
Unfortunately for me both the Chemo drugs they have tried for my Myeloma haven’t worked (first I had VTD and then CTD) so I am being admitted tomorrow for DT PACE, which is a combination of four chemo drugs given to those of us that are refractory (resistant to treatment) so I’m hoping it will work. Please don’t get alarmed as 80% of people respond to these Initial treatments; I’m the unusual one! The aim is for me to get to stem cell transplant, as it is for most of us that are on the younger side because it gives us the best chance of remission.
You don’t say what chemo he is going to get or what his symptoms were which ensured his admission. If you know you can look everything up on this site.
Stay calm and try not to panic; I know that’s easier said than done! Take one step at a time. Myeloma is a complicated condition and manifests differently in all of us. Personally I have Light Chain Myeloma. Find out what type he has and what damage it has done to his body if any so you know what you are dealing with. Ask lots of questions.
I suggest you then read up as much as you can from this web site; the information is excellent. You really do need to get your head around this condition. I felt much calmer when I was able to have a discussion with the consultants having had some back ground knowledge. I can recommend the info on Initial Treatment and there are info sheets on every type of chemo on here. The help line is also great if you want more info.
Lastly I would recommend the UK Myeloma Support Group Facebook page, I find this invaluable. This is for people with Myeloma and their carers – you may not see yourself as a carer but it just means the relatives that are trying to cope with it too! If you have a question about anything you can guarantee that someone out there will have had it, know something about it or point you to the relevant info! You also get an enormous amount of support from those in similar situations.
Best of luck to you all.
DT-PACE is a treatment combination used to treat myeloma patients who have received several previous treatments or who are refractory to treatment. DT-PACE is a combination of six drugs: Dexamethasone, Thalidomide, and four Chemo drugs: Cisplatin, Adriamycin® (doxorubicin), Cyclophosphamide and Etoposide.
Its given continuously over a 4-day cycle through a Hickman line. It means a stay in hospital for the duration of the treatment and for a 28 day recovery period after the treatment has ended as your immune system is non existent. Then they let you home for a bit and have you in later to do it all over again! No one’s favourite treatment; it’s pretty radical.
As I’ll lose my hair this time my daughter is buying me hats for Christmas to start off with, don’t think I’m a scarf person! Might try a wig, we’ll see, or I might just rock the bald look!
My son is a hairdresser. He says that he wouldn’t colour hair for at least 6 months afterwards because your hair is much more fragile than normal and has gone through trauma. He said if you must then use vegetable dyes not chemical ones.
My hair hasn’t thinned on either of the Chemo I’ve had (Velcade and Cyclophosphamide) but neither drug has worked for me so it looks like I’m headed for DT PACE so I’ll lose it all now; I’ll get him to shave it off before that happens, don’t fancy seeing it in clumps on my hospital pillow as I’ll have enough to worry about!
I know exactly how you feel; it does take over your life. My consultant rang me last week with the news that the Cyclophosphamide isn’t working either and my free light chains have gone back up again! Another bone marrow biopsy on Tuesday and then they will decide what happens next! I expect it will be a lot more aggressive this time so I’m not looking forward to that with Christmas and New Year looming; the aim is still to get me to stem cell transplant but it would appear that I have a very resistant type of myeloma!
I have found over the last year that the friends I thought would be supportive haven’t been and those that I didn’t really expect would be have been fantastic! People always surprise you!
Good luck on the Trail.
