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Just occurred to me that whilst I may be a bit ahead of you with treatment, we are both making this journey together and I’m with you all the way, if that’s what you’d like.
Regards
Jo
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
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
Hi
I’ve heard that can be a side effect although it’s not one I’ve suffered with.
That said, I’ve been suffering with an itchy scalp for several years (so nothing to do with myeloma or treatment) and my doctor was unable to come up with anything to help!
All I can do is tell you what I’ve found helpful for my itchy scalp.
Holland & Barrett’s Nature Spell Dry Scalp Formula (biotic serum) helped for a while. I had to use it daily.
I’m now using Body Shop’s Ginger Scalp Care and it’s working well for me. It does need to be used daily though I don’t remember every day and it’s still helping me.
I need to stress though that my itch is not a side effect; it’s caused by a dry non-flaky scalp.
I imagine you’re also taking Lenalidomide for 21 days and then you’ll have a 7-day break? If so, you may find the itch settles. Fingers crossed.
Hi.
An itchy skin – including/especially an itchy scalp – is sometimes a Lenalidomide side effect.
It is not something that I experienced, but if you go to the Home page of this forum and search for “Itch”, it has been mentioned a few times.
In terms of what seems to have been effective for any itchy scalp, I have had a look to save time and effort:
– Pam said “Now taking antihistamines which have helped.”
– Shropshiremum said “I take loratadine [an antihisamine], and it definitely helps”
– Lilib said “I think the hospital pharmacy gave him some creams and shampoo (sorry, I cannot remember the names)”. You could ask you doctor or nurse?
. Maidmarion said “I also bought him some Aveeno sensitive shampoo, which doesn’t contain parabens”.
I hope that this is some help.
Regards
Rabbit
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
I’m so pleased that Rabbit mentioned antihistamines as I’d completely forgotten that my local pharmacist had suggested that. He recommended Piriton as it’s for skin allergies (although Boots have their own brand at a lower price). They work well for me but, as they cause drowsiness, I only take one at night if the itch is bothering me.
Day 2 of your treatment today.
Remember to take care of you.
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?
Thursday.
Sleep well.
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!
Good morning Najmah
I’m sorry I haven’t been in touch but it’s been a bit hectic here. My husband has popped his back and is in a lot of pain. As I’m not driving at the moment, owing to difficulty with concentration, I’ve been busy organising lifts to appointnents. I’ve also had to take over all the jobs he usually does as he’s immobile.
Although exhausting it’s been good for me as I’ve had to just get on with it and it’s distracting me from side effects.
Now to you, do the steroids cause insomnia?
How was your third treatment yesterday?
Have antihistamines helped your annoying itchy scalp?
Warm regards
Jo
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
Hi Najmah
It was really good to hear that the Dexamethasone did not cause insomnia nor make you hyper. I take 5×2 mgs every Thursday, my treatment day. Incidentally, if you’re interested, look up Dexys Midnight Runners (remember them?) in WiKi, to see where they took their name from.
I have a bone infusion on the first day of every cycle, no idea what it is called, but plan to find out next time I’m in. I get the impression that you are kept well informed up there whereas I always have to ask; often more than once. I do understand that the team doesn’t want to scare patients with too much information, but I’m someone who prefers knowledge.
I’ve been struggling with side effects in recent weeks, predominantly nausea, but I seem to have that under control now with anti-nausea medication. This has enabled me to step up whilst my husband struggles with his own pain and immobility and life feels good right now.
Recent blood results show that my paraproteins are now too small to measure. The treatment is still doing its job and this spurs me on.
I’m now half way through my 5th cycle and have moved to fortnightly treatment as my consultant stopped the tummy injections a few weeks’ ago. This two week gap between infusions gives me a chance to see any changes and so far so good. Fatigue still gets me around mid afternoon, as is to be expected. I just listen to my body and rest when I’m tired – good advice that I was given early on in my treatment.
I believe Tuesday will be the last treatment of your first cycle and trust all is still going well for you.
Warm regards
Jo
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
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