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Hi ,
Im 55 years and have had a roller coaster 4 months
After suffered a back fracture i was diagnosed with a plasmacytoma which i have just had 1 radiotherapy session for. Today after a full body mri scan i have been told i have myeloma deposits in tops of both legs and another area of my spine. Mri also showed something non specific on my liver which i have to have more tests for. My next consultant appointment is 22nd November where the treatment plan will be discussed , i believe it will be 3 or 4 cycles of various drugs including chemo and then a stem cell transplant after this .. I feel absolutely gutted , currently i feel fine , just aches in back , my paraprotein is 12 and bone marrow biopsy showed 8-10% of plasma cells. Im worried about the treatment as my youngest 2 children are 10 and 13 , i work full time and my husband works 3 weeks in USA then 3 week home .. looking for reassurance and what side effects am i looking at with the treatment plan ….. Sue x
Hi Sue,
Although I am not familiar with plasmacytome, I have myeloma (and I have done a lot of reading up), so I will restrict my comments to that.
Chemo side effects vary so much from one patient to another. Some sail through it, some find it really tough. Therefore I don’t think that it is possible to give reassurance.
This is not a pleasant message to give or receive, I know, but planning for the worst whilst hoping for the best seems the best strategy.
I suggest making contingency plans:
– You and your husband telling employers about the situation. Employers are generally understanding (you also are disabled under the Equalities Act 1990, so you have some legal protection).
– If your children don’t do many chores, it could be a good time to show them how to use a washing machine, how to make their beds etc.
– Do you have any friends or relatives who can help, whether it’s doing school runs, shopping or whatever?
– If someone could go with you for your next appointment, you may be given a lot of information and have many questions. Going with someone could really help.
– For the stem cell transplant specifically, you are likely to be in isolation in hospital for a couple of weeks. If you could time that to be when your husband is in the UK, great, but it may be more than 3 weeks and you may well feel pretty weak when you come out (and vulnerable to infections).
I hate being the bearer of bad news, but the treatment ahead may be tough. Better to be ready for it. It won’t be forever – for example, I went through chemo and have been in remission since June 2023.
Please let us know how you get on.
Regards
Rabbit
Thank you Rabbit for taking the time to reply, the news was especially hard because on Wednesday i was told plasmacytoma only and watch and wait as all other levels good. Friday i had a call from a nurse to say my mri had been misread and deposits have been found so treatment must start.I go back to hospital in 3 weeks to get the treatment plan , for now nurse said take the weekend to think of any questions and then give her a call to discuss. Our youngest 2 children havent been told yet but will be after the next appointment. I am planning on trying to get as fit as i can before the transplant.
Hello myelomamum
Sorry to hear about your myeloma diagnosis. I’m sure it’s been a difficult time for you.
I’ve met a lot of myeloma patients through our local myeloma support group and can tell you that your story is far from uncommon.
The average age for myeloma diagnosis is 71 so you have age on your side and getting fit is probably one of the best things you can do.
My own myeloma journey started in 2012 when I was 58 with plasmacytoma pressing on the spinal chord which was sorted with radiotherapy and pps of 57 which came down rapidly after chemo treatment.
I agree with what rabbit says about side effects, it’s very hit and miss. Fatigue, mood swings, sleep problems, fluid retention, neuropathy are some of the common problems. You may be lucky and sail through but the side effects are usually temporary. The best advice is not to suffer in silence and speak to your haematology team early on if you have any problems.
There are plenty of new drugs now which are very effective, so remaining positive is the best thing. Expect 12-18 months of treatment and then quality of life will hopefully get back to normal. There is plenty of help available, eg Macmillan, but you have to ASK.
Hope this helpful.
David
Hi David
Just a shocker isnt it – I had not even heard of Myeloma before this … i have had so many bad thoughts but slowly i am accepting the fight i have ahead of me , hoping o can continue to work through tge first part ofy treatment , my boss is very flexible and i can work from home. Loosing my hair ( not a vanity thing ) is the only sadness i feel as it will make my younger children think i am really poorly , they lost an uncle to leukaemia 2 years ago so the threat will be real to them. Otherwise I will continue to try and get stronger. I have not had recent covid or flu vaccines…would it be recommended that i did ? Finally , I read parprotein was quite high was your bone marrow result high too ? And do these levels mean anything regarding the treatment plan ? TIA Sue
Hi Sue
Your probably best speaking to your haematology team regarding levels and forward treatment plan. There are also the nurses on the Myeloma UK Helpline who are very helpful if you’ve not already spoken to them.
Hope this helps.
David
Hi Sue,
You raise a number of questions and topics:
– “work through tge first part ofy treatment , my boss is very flexible and i can work from home”
That’s good. The treatment is likely to make you vulnerable to infection, so working from home means that you can’t pich up bugs from colleagues.
– On losing your hair: the initial treatment (the first 3 or 4 cycles) doesn’t normally do that. The stem cell transplant does cause hair loss, but you can tell the children that it is only temporary and that you could be around well into old age (people are living 20+ years with myeloma).
– On vaccines, by all means ask your medical team. It sounds sensible to have jabs.
There are many myeloma treatments and more are being developed and approved all the time. As my own kids would put it: you’ve got this!
Regards
Rabbit
Thank you for the replies , it is helping so much… im interested in how others felt through the treatment and stem… still absorbing lots of information off this site which as become my bible .. i intent to write down some questions for my nurse who is calling later. Have you experienced deposits on the liver also ?
Hi Sue,
On the treatment for the first few months (which is ‘induction therapy’), the most obvious question is what chemotherapy you are going to be on. This will typically be 3 or 4 drugs.
Something like lenalidomide = Revlimid, bortezomib = Velcade, daratumumab = Darsalex and dexamethasone. There are variations on this, such as thalidomide inatead of lenalidomide.
The ones that I have put in capitals are brand names, like Disprin is really just a branded version of aspirin.
I suggest asking for your blood results, such as what type of myeloma you have (e.g. kappa light chain or lambda light chain) and what the initial amounts of both of these are. That will give a baseline, so you can track progress as the myeloma cells get killed off.
You should be able to get the detailed results from your NHS medical records (when they get into your records, which can take a little while).
Regards
Rabbit
Regarsa
Dear Sue ,
I was diagnosed when I was 56 in 2012 with Myeloma .I had a bad cough which resulted in a lower vertebrae being shattered close by their was a tiny plasmacytoma.The GP did a blood test that indicated Myeloma .I choose to be referred to the teaching hospital rather than the nearer district general hospital .
I had operation on my back ,recovered quickly ,and 1 treatment of radiotherapy .Then went on a clinical trial and was so fortunate to receive Lenalidomide treatment and maintenance after my stem cell transplant.Lenalidomide is one of a number of drugs that are used now together at first line for a lot of patients leading to very good outcome and long periods of remission.
When I was diagnosed the youngest of our 4 children was 17 I was so worried about her and my husband worked abroad .The time during full treatment can be difficult and recovering from stem cell transplant takes time and I needed support .For me the it took 12months.
My youngest child is now 30 ,got married this year and has moved to Australia to work as a doctor for a year .Later this week we are going to Australia even though I am on treatment .
I think even young children need to be told in way that’s age appropriate .This medicine will make me better it will take awhile and during that time we will help each other .I took my youngest child for a treat the day after I was told and that weekend when everyone came home we went out for a family meal .When I was completely well the whole family went on a special holiday.
The one thing I really didn’t like was loosing my hair so I understand what you are saying .It does grow back .
Rebecca, our youngest daughter daughter did say this year if only I would have known at 17 how good this all turned out .
The treatments have so improved in the last 12years.
Best wishes Sue
Chris x
Hi Myelomamum
I was diagnosed 5 years ago after suffering 2 vertebral wedge fractures, I had aSTC but I knew my hair was going to fall out due to the Melphalan, so rather than the cancer taking my hair away, I did it by shaving my head the day before I went into hospital. I felt a bit stronger after that as I was in control of what happened to my hair. Only a smal point, but a big issue for me!
I was in remission for 3 and a half years but the Myeloma came back just over a year ago. Since ten I have been on lenalidomide with very few side effects and it is keeping the mteloma under control with paraproteins very low.
Keep your chin up, with new drugs and treatments being developed, there is a good chance that many living with the disease will live a lot longer than in years past.
Regards, Tony
Oh Chris reading your message as really reassured me , do you recall your paraprotein levels at the start of your journey? Although i seem to have a few deposits around my body, mine has stay at 12.1 for last 4 months. I am keen to start treatment and get on with it.Did you do anything else to try and help .. ie diet or supplements. What are you like now .. any pain or other mm symptoms.. Sue x
Many thanks Rabbit, you seem to have great knowledge of mm .. i am trying to get up to speed with this disease which has chosen me.
It had taken from July this year to get to this point and still awaiting a treatment plan, i do belive i have been diagnosed early but it still seems so long. Did you have a stem transplant ? How long have tou been in remission? Sue
Hi tony
It seems as if lenalidomitide is a really good drug , what are your levels now ? And is 3.5 remission consistent to others after a stem transplant ? Sorry for all the questions , i have so much to learn. Finally are all the treatment plans acsilable in all hospitals or do some only have access to certain ones ?
Hi Sue,
You asked me a couple of questions.
– No, I have not had a stem cell transplant. Some people or too frail or (my situation) they have another issue which would make a transplant dangerous. In my case, I have a dodgy heart.
– I have been in remission since June 2023. Having just come home from being tested and getting a daratumumab injection today, I go into November 2024 with another cycle in remission 😀.
– By the way, you say that I am knowledgeable: I actually read myeloma research papers! I want to know my enemy. My background is in science (but not medicine), so I do what I can to understand treatments together with their effectiveness and side effects, as well as eatablish what I can do to optimise my health in the face of myeloma. Some of it does go over my head, though!
Regards
Rabbit
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