[jataylorParticipant]

For the last 3 months I’ve been suffering from night sweats – always when I’m fast asleep, I wake up soaking wet and have to change my nightwear. It doesn’t happen in the day time, nor if I’m having a restless night. I’m currently on low doses of Revlimid, Dexamethasone and Ixazomib, plus various pills intended to counteract the side effects. The hospital doctors don’t seem interest in my night sweats; I could go to my gp but she will be reluctant to do anything if she thinks it’s the result of either the myeloma itself, or the drugs. Has anyone else experienced this?

[janwParticipant]

Hi,
For 3 years prior to being diagnosed with myeloma aged 53 years in 2010 I suffered really bad night sweats. Initially I thought the night sweats were linked to the menopause, however I’ve continued to sweat during the night and now during the day since living with myeloma. Your GP is correct in that sweating can be a side effect of myeloma and some of the drugs to treat myeloma such as Revlimid and Dexamethasone.

Similar to yourself, I’m currently on Ixazomib, Revlimid and Dexamethasone (Ird) which I commenced in May 2018. I’m also on Fentanyl patches and Tramadol for bone pain, both of which can cause sweating. Since starting Ird my sweating has been quite excessive at times especially during this year’s hot summer, but it can happen with minimal exertion and only stops if I sit down and rest, but sometimes I can just sweat lots whilst sitting watching TV. My hair can become soaked and the sweat can drip from my face and body resulting in me having to change clothes. Excessive sweating is really troublesome and can be quite embarrassing socially. I have to carry loads of tissues with me when out so that I can mop the sweat from my face. I’ve just had my dose of Revlimid reduced from 25mg to 15mg and the weekly steroids reduced from 40mg to 20mg, which I’m hoping will reduce the sweating a little which seems to be worse for me during the few days of each weekly steroid withdrawal period.

However we are not alone. There’s been a number of discussions on the Myeloma Beacon and Myeloma Facebook sites about this issue, with several myeloma patients linking their sweating problems to Revlimid and Dex. It’s worth discussing the issue with your haematology team to see whether they can offer you any help with the night sweats. I hope the Ird treatment is managing your myeloma activity. Are you suffering from any other side effects from this treatment?
Regards
Jan

[jataylorParticipant]

It’s helpful, Jan, to know you are on the same drugs. It means I will definitely press the myeloma doctors on this, as it does seem that it’s a side effect of the drugs rather than an infection. Fortunately I don’t sweat during the day time, or not much; it’s at night and when I’m fast asleep, that it’s worse. If I have a restless night and don’t sleep much I don’t sweat.

I’ve also been having bowel problems and diarrhoea, which is much better since I was prescribed Colesevelam. However, the pharmacist at the hospital warned me not to take these pills at the same time as the other pills as they can have an adverse effect (something the doctors weren’t aware of).

Judith

[janwParticipant]

Hi Judith

I’m currently on my 8th cycle of Ird which has successfully reduced my light chain levels from 3000 to 39. I hope the treatment is also working for yourself? I too have bowel problems from the drugs with ongoing constipation rather than the diarrhoea which you experience. Similar to my other myeloma chemotherapy treatments I also experience a range of side effects from the toxicity of the combination of drugs, i.e. nausea/vomiting (treated with anti-nausea drugs), fatigue, peripheral neuropathy in my legs, low platelets, reduced neutrophils, muscle cramps, and sleepless nights from the steroids. Thankfully the reduced Revlimid which commenced from my last cycle has helped with some of these side effects especially the fatigue.

With one of the common side effects of blood cancer being night sweats whilst you are sleeping, then it must be difficult for the doctors to identify whether the myeloma, the combination of the myeloma drugs and/or other medical factors are causing/contributing to your night sweats. But with talking the issue over with your haematologist you
will be able to find out more about what might be causing the issue and hopefully whether anything can be done to alleviate the problem.

In an attempt to ease my sweating at night, I’ve had to turn down the winter heating in our house to around 15c together with switching it off at 8.00 pm (much to the delight of my husband who has constantly moaned for years about our house being too warm in the winter months), open all windows in the bedroom during the winter as well as the summer months, purchase a very low tog rate quilt (2.5) with natural down, use 100% cotton sheets and use a cool gel pillow.

I hope you manage to find ways of alleviating your night sweats.

Jan

[michaelcParticipant]

Hi,I have Multiple Myeloma and Lymphoma. I also have Osteonecrosis of the jaw. My right-side bottom lip and some of my chin are nerve-damaged due to that part of the mandibular nerve being breached by the disintegration of my jaw.

Last night I had the weirdest sensation ever of like an insect crawling inside my flesh of the lip. This is even stranger, becasue it’s an itch that won’t be scratched as I have nerve damage in my lower lip and it is permanently numb. After scratching and rubbing, I splashed cold water on it and managed to get back off to sleep. It must be a type of neuralgia I presume. I know people with MS can get this sensation. Whatever next?
Has anyone else had this?
Best wishes to all,
Michael

[susieParticipant]

Hi Jan

Sorry to interrupt this chat but I noticed you are on rid and at the end of cycle 8. I too am on this combo and have just finished cycle 6. I know the patient stays on this till it stops working but do you know if one stays on all the drugs or is it just Revlimid you stay on.? At my last consult I got the impression he may reduce or stop some of the drugs.

Hope you’re keeping well

Best wishes

susie

[janwParticipant]

Hi Susie

It’s a good question which I’ve asked my consultant on a couple of occasions, but unfortunately there’s not a straightforward answer because it all depends on various factors such as whether your myeloma is aggressive, your past myeloma history with your previous treatments and relapses, as well as how you respond and tolerate the Ird combination of drugs. Understandably we all want to reduce our myeloma levels to as low as possible and then to maintain the low levels for as long as possible, but at the same time being able to achieve an acceptable quality of life whilst having to continue to take chemotherapy drugs whilst on maintenance. However the least favourite drug for many of us is the steroids especially at their starting level of 40mg per week due to their many adverse effects such as sleepless nights, mood swings and weight gain. Therefore once the treatment begins to consistently reduce myeloma levels, or you cannot tolerate such a high weekly steroid dose, then the first drug to be altered appears to be a reduction in the weekly steroids. Once you have achieved your lowest level of myeloma on Ird, then some patients appear to have the steroids tapered off, but maintain the Ixazomib and Revlimid drugs for as long as the treatment continues to work. The doses of these two drugs appears to be different for every patient depending on the factors mentioned above.

In my case, from cycle 7 onwards I started experiencing adverse side effects resulting in low platelet and neutrophil levels, therefore my consultant reduced my dose of Revlimid from 25mg to 15mg and the steroids from 40mg to 20mg to see whether this would increase the levels. Initially this strategy worked for a few months, but then the levels decreased again which currently are around 60 for my platelets and 0.8 for the neutrophils at the end of each cycle. I’ve now been prescribed weekly Gcsf injections every other month which appears to be working. Unfortunately both Revlimid and Ixazomib are known to reduce platelet levels, therefore it’s a case of seeing which drug, or combination of both, is affecting my platelets and then reducing the dose(s) accordingly. On the Ninlaro (Ixazomib) website, there are dose modification guidelines for prescribing Ird when patients experience adverse effects such as low platelets, low neutrophils, increased peripheral neuropathy, skin rashes, etc. The other option is to have a short break from the treatment to allow the body to recover.

We all tend to react and tolerate these combination of drugs differently and with Ird being a new oral treatment for relapsed myeloma, unfortunately there’s not long term data around about what’s the most effective way for maintenance treatment, especially When consideration has to be given to patient factors, disease factors and treatment factors. Hopefully with Ird currently being funded via the Cancer Drugs Fund, then more information will be available on this subject over the coming years. I’m just thankful the treatment is working for me and hope this continues for as long as possible.

How are you coping on Ird? Are your myeloma levels reducing?

Best wishes

Jan

[susieParticipant]

Hi Jan

Thanks for your reply which was most informative.

Yes this combo has brought my Parapeoteins down from 40’s to 4. The Dex was reduced some time ago due to really bad cramps, so currant dose is 10mgs but I still get the cramps in my hands. My consultant told me the steroids are not that important which I found odd. I’ve had a fair few side effects from ixazomib which was reduced to 3mgs. Revlimid is still at 25mgs.

I can’t seem to get my head round staying on these drugs for what may turn out to be a very long time, at top doses. I would have thought once pp’s are down the doses would have been reduced, then if pp’s start to go up, doses would be increased again. As it is done currently there is no way to increase drugs to bring pp’s down again.

I hope that makes sense. I know myeloma is very individual. Do you ever question what medical bods say/order ? I’m terrible I need to know the ins and outs of it all.😊

Very Best Wishes Jan.

susie

[janwParticipant]

Hi Susie

Sorry it’s taken a little time to reply, but I’ve had a bad cold which has knocked me back for some weeks. Its good to see your paraproteins have reduced really well on Ird.

For around a month before I commenced Ird in May 2018, my light chain levels were rapidly rising at a rate which I’d never seen before over the previous 8 years. It was quite frightening just how quickly the myeloma could increase its activity. During my first four cycles of Ird, I struggled with nausea and vomiting which was closely monitored every couple of weeks by my haematology team. It became apparent that during the first 3 weeks of each Ird cycle whilst I am taking the drugs, my myeloma levels were slowly reducing. However during the last week of each cycle when no Ixazomib or Revlimid are taken, then my light chains would begin to rise again. Therefore I know that I need the Ird drugs to keep my myeloma under control for as long as possible to prevent a relapse. But as you say – for how long and at what dose? Unfortunately with Ird treatment being fairly new, then apart from the clinical trial results there isn’t much data on what drug doses are successfully used for long term maintenance treatment, unlike Revlimid which has been used as maintenance for many years with low doses of 5 – 10 mg proving effective.

Whilst on Ird, thankfully over the last year my light chain levels after each cycle have continued to slowly decrease from 3000 to 27, which is their lowest level even after two Scts. Whilst my light chains keep reducing and I can cope with the various side effects, then I’m not keen to reduce the dose of the drugs until the levels stabilise and remain well controlled for three months or longer. My consultant has advised that once the doses of the drugs are reduced, but then needed to be increased again if the myeloma begins to become more active again, then sometimes the drugs are unable to control the increased activity and a change of treatment is required.

What does your consultant say about reducing your drug doses?

Best wishes
Jan x

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