[najmahParticipant]

I asked and was told they were not connected, although the consultant said you are ever so slightly more susceptible to get a different cancer once you’ve had one (I think she said something like 2% more likely).
I don’t know very much about Fibromyalgia, are the symptoms similar to Myeloma symptoms? Would you have had regular blood checks while you have had Fibromyalgia?
An exciting time for you coming up then with your granddaughter’s wedding. 🤞🏼You will be fine for it.
When I posted here on 7th April I had some lovely replies. There’s a lady called Jo who is a few months ahead of me with her treatment and she’s having the same regime as me. She gave me a great insight into her side effects although I know everyone is different and reacts differently to each aspect of the treatment.

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Well you don’t look 67! I had a hysterectomy too, for uterine cancer, that was 25 years ago.

[najmahParticipant]

Hi Katie,
I found the MRI scan ok, a bit claustrophobic but I just thought of nice things! I believe you can receive light sedation for it.

Well my symptoms, I would say since late November I started having a bit of back and hip pain. Nothing that stopped me carrying on as normal, with Christmas coming up and the fact that my husband was undergoing Chemotherapy I just got on with things – as you do. Although I’m 73 I an a runner and keen gym goer. I found that by February I was getting pain when I ran and couldn’t lift my normal weights in Body Pump. I went to my GP in March who thankfully didn’t fob me off with painkillers for months but sent me for an X-ray. Two weeks later she rang to say the X-ray showed shadows and dark areas around my hip and down my thigh so the next day she had me in for blood tests, the day after that she rang to say she had the results and she suspected myeloma, she put me on a fast track referral to the hospital. I then had the blood tests repeated, the MRI and the bone marrow biopsy which confirmed that I had Multiple Myeloma.
I’m assuming you are 59 Katie? From listening to the ‘Myeloma Matters’ podcast it appears that 2/3 of Myeloma patients are older (I.e. over 70). So you would be in the minority age group.
When I was working a good friend I worked with was diagnosed with myeloma. We were both 56 the time. She had treatment and has been in remission for 16 years, she is really well and we tend to forget that she still actually has myeloma!

[najmahParticipant]

Hi Katie and welcome to the forum. I’m new here myself after being diagnosed on 7th April.
I’m due to start my treatment next Tuesday. My light chains were similar to yours. I had a high Paraprotein level and low FBC so it’s encouraging that your FBC was normal.

Things moved very quickly for me and after the blood tests I had a full body MRI scan and a bone marrow biopsy which confirmed the diagnosis of Multiple Myeloma. It does come as a shock to the system, especially when up to these problems you have been fit and healthy.

I think Rabbit has given you excellent advice. It is all too easy to go on the internet and diagnose yourself, as soon as my blood test results came through I did just that! to I initially thought it was all doom and gloom but it certainly isn’t, I have already found lots of information on this site and I think joining the forum is such a good way to read of other people’s experiences and get their advice.

I’m wishing you well and I’m sure you will be back to tell us your outcome.

Best regards.

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King Edwards Bay is still lovely. The Spanish City underwent a complete refurbishment a few years ago and if you are ever back up this way I would recommend a visit. It’s beautiful inside. The restaurant has stunning views, my daughters took me there for afternoon tea on Saturday.
Well I’ve had my pre-assessment this morning. More bloods, I guess I’ll get used to that! Swabs taken too and weight and height. Then I saw the nurse from the chemo ward who talked me through what would happen on my first treatment next Tuesday, I guess it must just turn into a routine after a few visits. She told me about what medication I’d be bringing home too, there seems to be a lot! Also I need to arrange to have my bloods taken before each cycle, I can either go to the hospital for that or ask our GP surgery to do them, I’ll do that as the GP’s surgery is more convenient.

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It certainly is a small world! I live in Whitley Bay.

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Good advice, thanks Jo. I didn’t think I would be spending most of my Tuesdays having treatment! Naively I thought it would be similar to my husband’s, he had his treatment once a month for 6 months.
Good idea to keep a journal. I sent off for the myeloma diary from here and it’s very comprehensive. I can record my bloods, my progress, write notes etc so very similar to a journal.
Where are you having your treatment? Mine is at the Freeman in Newcastle.
Best wishes.

[najmahParticipant]

Hi Marty, thanks for your reply. I’m being treated at the Freeman too. I’m not having a stem cell transplant though, my age is against me. I agree the team there are brilliant. We already had experience of that department as my husband completed 6 rounds of chemo there in January for Non Hodgkins Lymphoma. (He’s doing well and is now on immunotherapy, an injection every two months).
Glad to hear you are in remission and doing well.

[najmahParticipant]

Thank you for your lovely reply Jo and all of that interesting information. I’m similar in age to you, I’m 73. My mum had myeloma 25 years ago and didn’t live very long after her diagnosis but as my consultant said treatment now is totally different to how it was all of those years ago.

It must be so encouraging to see those numbers drop, makes it all worthwhile. I’m glad to hear that your side effects were manageable and your muscle pain has eased.

I’m similar to you to in that I have a very supportive husband, he’s just come through chemo himself after being diagnosed with Non Hodgkins Lymphoma. He’s fine now and on maintenance therapy, an injection of Rituximab every two months. I’m very close to my two daughters and have a good group of friends.

I have my pre assessment on Tuesday 21st, then treatment starts on 28th April. I was a bit alarmed when my treatment schedule came through the post, my final date of treatment is 15/08/28!

I will definitely keep in touch. Thank you.

[najmahParticipant]

Hi jomjo75. I’ve just found your post and was interested in reading it as I’ve just been diagnosed recently and I’m due to start the same treatment as you on 28th April. How are you finding the side effects now youve been on the regime for a few months? I’m hoping they are not too bad for you but I expect everyone has different reactions.
I hope you are doing well.

[najmahParticipant]

Ian, I’ve read the first 5 chapters of your book. It’s brilliant! My husband said he’s going to read it too when he heard me having a good laugh at your descriptions 😂😂

[najmahParticipant]

Thank you for your reply Ian. Good to know you were on the same treatment but sorry to hear your numbers have gone up. My treatment is due to start on 28th April. (I have to go next Tuesday to see the nurse and watch a video). I’m a patient at the Freeman hospital in Newcastle upon Tyne. I’ll definitely download your book onto my kindle. Thank you.

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