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I am a female in late 60’s and was diagnosed with Myeloma yesterday – telephone consultation. I am still in shock and cannot believe I have this. I was being investigated for low white cells after having CoVid and thought it was the virus that had caused it. I will be having a consultants appointment in two weeks and treatment starting shortly after that. My CT scan is showing no damage to my bones.
I have had no other symptoms except the low white cells and had my first chest infection in my life when I was 64 and have kept healthy throughout my life except for catching CoVid.
I didn’t sleep at all last night – felt sick with worry.
I am concerned obviously about the treatment as I have a few allergies. Terrified about the cell transplant and does everyone get offered one.
Any advice would be appreciated.
Hello Lottie
Sorry to hear your news.
The first thing to say is that it may not be curable but it certainly is treatable with new treatments all the time. This certainly has been the case since I was diagnosed in 2006 when I was 48. I have had 3 treatments and 2 SCT since then and am currently in full remission. It seems to be a desease that affects individuals in different ways and I think that also applies to the treatments. I had the same treatment twice and the side effects were different each time. This was also the same for my two SCTs. For me none of the side effects were too bad, the main one I remember was fatigue. I have had two SCTs and I think that is it for them for me. I dont know the critria for being offered but believe it is down to whether your body is strong enough and as such I had many tests before each of mine. It is also your choice. I personally have never delved into the intricasies of the deasese and my only guide is with the paraprotein level. My current status is that they are non detectable. I know that when these start to rise to a cetain level I will need treatment. I have a great consultant and let him look into the ‘details’ for me. Still here nearly 16 years since diagnosis and intend to grow very old very discracefully.
As I have said I dont know much about the disease itself but am happy to answer any questions about my journey (if I can remember !!)
Best wishes
Kevin
Hi Lottie,
Sorry to hear about your diagnosis – it must have come as quite a shock, especially through a phone call so I can totally understand why you are feeling worried.
I am one of the discussion forum volunteers here and my dad was diagnosed with myeloma in 2013 at the age of 62. It is great that they haven’t found any bone damage so seems they have caught it early. As Kevin says, whilst myeloma isn’t curable, it is very treatable and more treatments are coming along all the time. It is very much an individual disease. Everyone seems to react differently to the treatments and the disease itself.
Speak a lot with your consultancy team and ask as many questions as you need. I found it very helpful to take a notebook along and write down as much as possible as there is a lot of information, acronyms and different treatments to take on board so is helpful to refer back to. I also write down questions that come to me (even now) to ask at the consultations so I don’t miss anything. We are all here as well to support you and share the information from our individual journeys and there is the infoline which is very helpful too 0800 980 3332.
Not everyone has a SCT. Some choose not to and some aren’t able to because of health/age. The best thing is to speak with your team about the treatment options they would advise for you. Try not to worry too much about the treatments. Dad had barely any side effects from his first treatment and recovered well from his SCT. It is a slow recovery in terms of getting energy levels back but he got stronger every day. He had a 7 year remission period before relapse where he lived a very normal life. He hasn’t had as much luck with side effects this time around with his first treatment for his relapse but he has since switched on to another course of treatment which he is responding much better to and feels much much better.
Hopefully you will find a treatment that works well for you and before you know it you’ll be back to your normal activities.
Take care of yourself and let us know how you get on xx
Good evening Lottie
I think we all go into extreme shock to the core when we are diagnosed with this disease. It turns life upside down and is totally preoccupying initially.
However after treatment – which if you have a stem cell transplant, is likely to take around a year- life really can & for most of us does- go back to pretty normal, especially for those (like you & I) who have no obvious bone lesions.
Myeloma UK has lots of excellent information for us as patients & are very supportive.
New treatments are regularly being approved & give us all hope that myeloma will soon be seen as a chronic disease, rather than an incurable one.
Welcome to this club no-one wants to belong to.
By the way I spent the afternoon with two other myeloma patients, one was diagnosed 17 years ago and the other 19 years ago……
Jane
Thank you for your lovely response.
Still in shock and up and down.
Trying to keep busy and positive.
Lottie
Thank you to everyone for all the comments, very much appreciated.
I have received details of the treatment the consultant is planning:-
Bortezomib
Thalidomide
Daratumumb
Steroid: prednisolone and dexamethasone
Has anyone had the sane treatment and are there any particular side effects anyone had. I know everyone’s system reacts differently but interested to know.
Thank you all.
Lottie
Hi Lottie
You are being given a fairly new treatment regime, those of us diagnosed more than about 15 months ago were given 3 rather than 4 drug regimes.
The 4 drug regime in trials has produced much longer progression free survival times, an excellent world class treatment.
These drugs are more targeted than old chemotherapies, but still can be pretty gruelling. Some of us have more side effects than others, some manage to continue a pretty normal life.
Myeloma UK have a good series of information about current myeloma drugs which will give you information about the possible side effects, (but you won’t get all of the side effects).
The drug we seem to find the hardest to live with isn’t actually one of the myeloma specific drugs, but is the steroid given alongside them.
Life feels much better the other side of induction treatment!
Hi Lottie,
As mulberry says, most of the ‘older’ treatments were a 3 drug combo, so though I haven’t had experience of my dad taking the same combination as you are starting on, he did experience digestive issues of sickness and diarrhoea with both daratamumab and bortezomib. His care team strongly advised him not to suffer in silence and flag up the side effects and how bad they were, which he did. He is now on a different combo which agrees much better with him so I’d say see how you get along with the combination as everyone reacts differently but make sure you flag any issues with your team as they may be able to help manage any side effects. Hopefully the side effects will be minimal for you xx
Hi Lottie,
I am a newly diagnosed 60 year old and like you this all came as a bit of a shock. I had visited the GP about something else entirely and on doing routine blood tests the myeloma was picked up. Apart from feeling a little tired I had not noticed any of the symptoms associated with the disease. My consultant has classified me as stage 3 with aggressive cancer.
I am on almost the same course of treatment as yourself just without the prednisolone and I am half way through the third of four cycles. The heavier doses of dexamethasone 40mg during cycle one made me very tired and unable to do much, but this could also have been caused by my low hb levels. I have been very shaky and a persistent feeling of being slightly drunk to the point where I haven’t liked to drive. After the third week of treatment I thought about finding a walking stick for reassurance. Apart from that my side effects have been minimal, the only slight neuropathy that is constantly mentioned has been in my lower lip!
The steroid dose has reduced in subsequent cycles and the side effects have reduced slightly. For the first time I am steroid free this week as for me the Daratumumab had dropped to alternate weeks and only then do I need the steroids.
I have found you get into a routine. I have chemo on Friday, feel good then and on Saturday, by Sunday evening I start to feel shaky and then Mondays I’m not up to much, often sleeping a large part of the day, then I start to feel more energetic by Tuesday night. It has been the same most weeks. I cannot pretend to be as productive as pre Diagnoses as gardening now involves secateurs rather than a spade and any work is interspersed with longer than normal tea breaks.
My taste in food has changed and all things I found too sweet previously are now the ones I crave. Coffee, wine and blue cheese are no longer on the menu but pineapple is first on the shopping list.
I now have been given the first appointment in June to discuss stem cell treatment. I was warned that this could be delayed as there was a backlog due to covid but now due to the nature of my cancer I am further up the list. Having put off researching more as it seemed a long way off and a little daunting, I must look into it more now.
The speed at which things happened has been quite overwhelming with a host of checks and appointments in the first month of diagnoses, all of which I have been very grateful for. I was given the Myeloma UK info pack which has been invaluable as it covers many questions you may not think of mentioning when seeing the consultant or as back up when you’ve forgotten something. All staff involved in my care have been wonderfully supportive and weekly visits to hospital have been positive and reassuring. I hope your hospital proves the same. I have been amazed at how efficiently everything has worked.
Good luck
Judy
Hi Kevin,
Thank you so much for your response and information.
I am still coming to terms with this as I had no symptoms so came as quite a shock.
I was so glad to hear that you are in remission and have been for a while, long may that continue.
Best wishes
Lottie
Hi KH0305
Thank you so much for your detailed response and information details.
I have been reading a lot of information from this site too but still seems all a bit unreal at the moment.
I will certainly let you know how I get on.
Thank you again.
Best wishes
Lottie
Hi Mulberry,
Thank you so much for your responses and information, was lovely to hear you had met up with Myeloma patients who were diagnosed years ago, that was good to hear.
I just want to get on with treatment now and hoping I don’t have too many side effects.
Thank you again.
Best wishes
Lottie
Hi Judy,
Sounds like your diagnosis was discovered like my one was.
Thank you for all the information on your treatment, this helps a lot as like you say you are on similar treatment and it was great to hear how you were progressing with it. I appreciate everyone’s system will respond differently but this was helpful.
I have received the Myeloma Info pack and found that extremely useful and like you say details on suggested questions was helpful.
I have not been told what stage my Myeloma is at, I may find that out at my Consultants appointment.
I have found everyone so very helpful and cannot fault the medical staff either.
Good luck to you too, let me know how you get on with your stem cell appointment.
Best wishes
Lottie.
Hi Lottie,
You’re very welcome. Great to hear that the medical team have been supportive and helpful. We had a fabulous experience with our medical team when dad got diagnosed and found it very reassuring. Don’t hesitate to reach out with any more questions on here or the infoline. Keep positive and hope the consultant appointment goes well xx
Hi Lottie,
I have just read two other useful books from Blood Cancer UK. Myeloma , which explains in layman’s terms much of the medical jargon you will hear over the next few months. It explains what the disease is and how to interpret your blood results. Although your consultant will probably go through all of this when you are first seen, I didn’t take all of it on board and this is a good reference as back up.
The second book I requested was Blood stem cell and bone marrow transplants: The seven steps. Again very informative and as I’ve read this before my appointment with the consultant it has raised questions I need to ask.
Both books were produced 4 or 5 years ago so do not have the latest treatment listed but were reviewed more recently so there is no reason to assume that the information is not accurate.
Best Wishes
Judy
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