Hi Jo, thanks for asking. I had my treatment yesterday, it was lovely and cool on the ward as they had the a/c on full blast. I saw the consultant first and she told me that my last blood test showed a drop in the myeloma blood markers, it has come down from 90 to 65 which is good news and shows that the treatment is working. She repeated all of my blood tests so she could get a better measure of the paraproteins and light chains and she said she’d let me know what they are via a letter.
From next Tuesday I am alternating going for the Bortezomib injection and having the full days treatment. I think that’s on my schedule until the end of august then I have a block of days cases.
The only side effect I’m having so far is that the Dexamethasone is disrupting my sleep. I was awake at 3am this morning and had to get up at 4am. A couple of weeks ago I had some constipation too (down to the Bortezomib apparently) so I was prescribed some laxatives and they seem to have settled me down.
How are you doing? How is your husbands back?
Najmah
Hi Jo,
Good to hear from you. I’ve just googled Dexys Midnight Runners, so they were taking it for fun as apparently lots of people were in the 60’s😂 I did find that after taking the tablets on Wednesday morning I had a bit of a restless night. I had some very vivid dreams, verging on nightmares! Then I woke at 4.30 with all sorts of thoughts running around in my head and I had to get up. So I had all of my cooking and housework jobs done by 7.30am. Hopefully it was a one off!
I take 10 2mg Dexamethasone tablets on Tuesday, my treatment day and then the same on Wednesdays.
Good to hear that you have moved to fortnightly treatments, and also that your Paraproteins are too small to measure, that’s great news. It’s also very encouraging that your weekly injection have stopped. It’s all very encouraging news, I’m pleased for you and you must be pleased too. I haven’t had any nausea or tiredness yet but I do expect it will come at some point. As you say all you can do is take the anti nausea pills and rest when you feel tired.
Yes Tuesday is the last day of my first cycle, I’ve just been up to the Freeman this morning to have my bloods done as my GP’s practice made a mess of my appointment and phoned to say the nurse couldn’t do them. So I thought the safest way to make sure it was done correctly and on time was to get the bloods done at the hospital. It means a 20 minute drive each way but it’s worth it for peace of mind.
Hope your husband is improving.
Warm regards,
Najmah x
Hi Rabbit,
Please don’t keep quiet, I love reading your posts and they are always very informative.
Thank you for your advice and telling me of your experiences. My consultant told me not to do my classes as it will not do my back any favours at the moment so I’m just biding my time. As for running I don’t think I’ll get back to that which I can live with but I do want to get back to my classes eventually. I’ve looked at the exercise sheet on this website but it’s not really for me!
Hi ap003,
You are young to be diagnosed with Myeloma so hopefully they have caught it really soon and your treatment will go well. I was diagnosed in April and I’m on IsaVRD.
I’m 73 but have always been fit and very active, I usually run once or twice a week and go to a gym class every morning, I do Body Pump, Body Combat and Body Balance which is a mix of Tai Chi, Pilates and yoga, and I had also just started reformer Pilates. All of that exercise actually helped me in my diagnosis as I was finding I was getting pain in my hip when I ran, body pump was hurting my back and I couldn’t even do the downward dog in body balance because it hurt my lower back so all of that prompted me to go to the doctors and I had a very quick diagnosis from there.
So I suspended my gym membership as I knew I just couldn’t do the classes. I do hope to resume them depending on how the treatment works. So I just wanted to ask Rabbit how he felt getting back into exercise and was 6 months the kind of benchmark time that you felt it was right? Did you build it up gradually? I have a L3 fracture and a tumour at the base of my spine so that will explain the pain on exercise. I’m fine with walking though and try to get out for an hour every morning. I do miss my classes but I know right now I’m not capable of doing them. I know you said cycling is good and there is a spin studio at the gym, I did try it but I hated it! So apart from walking and cycling have you any advice on what I should start with on going back to the gym? ( I know I’m looking ahead but it’s good to make plans😂).
Enjoy your trip to Barcelona ap003, I’m sure you and your son will have a great time.
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!
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
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!
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?
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
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
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.
Hi Katie, just wondering how things went for you on Wednesday?
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
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.
Good luck for Wednesday 🤞🏼
