[najmahParticipant]

Hi Beaming, sorry to hear about your husband, especially with his myeloma being one of the rare ones. I can’t add anything as mine is IgA K so the second most common one. I was diagnosed in April and have had 3 treatment sessions that have all gone well. I’m on Isa VRD treatment and cant have a transplant due to my age (73).

I hope all goes well with his treatment and the tandem transplants are successful, I’d never heard of them before so had to google!

[najmahParticipant]

Hi Jo, sorry to hear about your husband. Is he taking anything for it? I know a bad back can be very debilitating and can take a long time to get better so it’s good that you are able to take on some of the things he normally does but don’t wear yourself out!

Yes the antihistamines have solved the itching problem. I just bought some of Sainsbury’s own make and avoided Piriton as that can make you sleepy. My third treatment yesterday went well, although I did fall asleep having the Isatuximab infusion. I’ve read that a side effect is that it can do that and make you feel sleepy for the rest of the day and that’s what I’m finding, when I come home I’m tired and in bed early. Apart from that I’m having no side effects so far. The consultant said she’s going to start me on a Zometa infusion at the end of June, she’ll just add it to my treatment once a month. It’s a bisphosphonate and helps to strengthen bones. Are you taking that? The steroids don’t seem to have any effect t on me whatsoever, they are not stopping me sleeping or making me feel like I want to eat everything in sight!

Hope your treatment on Thursday went well.

Warm regards,

Najmah

[najmahParticipant]

Good luck for Thursday.
I’m off to bed now. I hope I don’t wake in the middle of the night with the steroids!

[najmahParticipant]

Thanks Jo,
I had an antihistamine intravenously today which I think is standard with the treatment. The nurse said I could take a daily antihistamine but best to avoid the drowsy making ones such as Piriton. So I looked on line for a non drowsy one, the ones containing fenofexadine are ok. Sainsburys do their own brand so I’ve bought some and will take one tomorrow if the itch returns.
My treatment went well today, not as long as last week as they put the Isatuximab through more quickly. So I was all finished by 12.30, that was from 9am. It seems to have wiped me out for the rest of the day, so I’m going to have an early night with my book and hopefully I’ll be raring to go tomorrow!
When is your next treatment Jo?

[najmahParticipant]

Thank you Jo and Rabbit.

I’d also read that antihistamines can help but don’t want to take anything without checking it out with the medical team so I’ll mention it to the nurse when I go to the Freeman on Tuesday. I have some Aveeno shampoo so I’ll use that tomorrow. Thanks for telling me what’s helped you too Jo, even though not caused by the Lenalidomide, those remedies might be helpful.

I’ve just checked my box of tablets and it says take one every day for 14 days, so maybe I’ll get a break then. It’s all still fairly new to me as I’ve only had one treatment session.

Regards,

Najmah

[najmahParticipant]

Hi Jo, I’m on day 5 of the lenalidomide tablets and have developed a very itchy scalp. I’ve read it can be a side effect and just wondered if you’d suffered from this too? If so do you have any remedies?

Thanks,

Najmah

[najmahParticipant]

Well I suppose that’s good news. Not good in the fact that you have MGUS but good that it wasn’t a myeloma diagnosis. I’ve heard of MGUS as one of my friends has had it for a long time but has never needed any treatment. Good that you will have regular check ups.

[najmahParticipant]

Hi Katie, just wondering how things went for you on Wednesday?

[najmahParticipant]

Definitely Jo, thank you. It will be good to keep track on how we are both doing as we are on the same regime.

I woke with a splitting headache this morning so added a couple of paracetamol to my morning cocktail of drugs. I feel great today but realise it might be a few days before yesterdays treatment and all the daily meds start to take effect.

Regards,
Najmah

[najmahParticipant]

Just thought I’d let you know that my first treatment day is over. It went like clockwork with no reactions or problems. I was all set up just after 9am and finished by 2.30. The nurse said subsequent visits will be quicker as they can give the Isatuximab faster. The staff were lovely and the tea trolley came round lots!
I have a big bagful of meds which I have sorted out and I’ve already given myself the Accofil injection and taken the lenalidomide tablet.

[najmahParticipant]

Good luck for Wednesday 🤞🏼

[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.

[najmahParticipant]

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.

[Author]

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