[jomjo75Participant]

Hi Najmah
Wondering how you are now you’ve had a few treatments.
I hope your treatment centre is managing to keep you cool in this heat. I’m cooking 🥵

[jomjo75Participant]

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

[jomjo75Participant]

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

[jomjo75Participant]

Thursday.
Sleep well.

[jomjo75Participant]

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.

[jomjo75Participant]

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.

[jomjo75Participant]

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

[jomjo75Participant]

I’ve visited the Spanish City a few times in recent years as we used to visit my aunt, in Newcastle, every year or so. She died early last year so we’re unlikely to be up that way again.
You will indeed get into a routine with treatment and yes, there are lots of pills.
I’m fortunate in that my bloods are taken in the day centre, on the 4th day of each cycle, so one less thing for me to think about.
All good wishes for next Tuesday

[jomjo75Participant]

Our favourite beach, in the 1950s/and early ‘60s was King Edward’s Bay. We’d get the bus into town then another bus (I think) to Tynemouth.
We moved from Benwell to Kenton in the mid ‘50s and sometimes we’d walk to South Gosforth and catch the train to West Monkseaton.
Whitley Bay and, of course, the Spanish City, were the haunts of my teenage years.
Much changed now of course.

[jomjo75Participant]

I live in the South so my treatment is in Surrey. I am, however, a Geordie lass! Left the North East decades ago but never lost my roots.
I visited the Freeman when my mum was being treated for chest problems, way back in the ‘90s. A fantastic hospital.
It’s a small world.

[jomjo75Participant]

I was horrified when I received my treatment protocol and realised just how intensive and long term my treatment would be. My way of dealing with it is by taking baby steps. I don’t look ahead, just take each day as it comes.
I’m also keeping a journal as this shows me any patterns and acts as a reminder that the not-so-good days pass.
I hope all goes well for you tomorrow and you’ll be in my thoughts next week.
Take care.

[jomjo75Participant]

Hi najmah and welcome to the forum.
I’m pleased to hear from you as there don’t seem to be many members on Isa-VRD.

I’ve experienced several side effects and most are manageable. Fatigue is ongoing for everyone on Myeloma treatment. Occasional nausea can be stopped with pills. Some days I have an unpleasant taste in my mouth and lose my sense of taste. All short lived and easily manageable. The hardest side effect for me has been muscle pain (not bone pain) but this seems to be unusual. My consultant had not come across it before. There again, I’ve always been different from everyone else and don’t forget that it’s different for everyone and most people do not experience all side effects.
My consultant has removed one of the drugs from my chemo as there are signs that might be causing the muscle inflammation. After a few weeks, when the inflammation has settled, she’ll decide whether to reintroduce the drug at a lower dose.

Whilst the pain was awful it’s now under control with morphine and I’m trying out slow release morphine patches. Watch this space.

All I can say to you, from my personal experience, is that it’s worth it. My kappa light chains have already plummeted from over 300 and are once again in the normal range. My paraproteins are now just outside the normal range. My kidneys and liver are functioning well.

It’s a very intense course of treatment and challenging but, seeing those numbers dropping at the end of each cycle is great. Naturally there has been a time when I wanted to stop, but then I looked at the numbers again and no contest.

Like many others I’m getting used to a new normal!

I have an amazing husband, supportive family and two close girlfriends. Talking to them without being judged helps a lot and I realise that I’m fortunate.
I don’t know what support you have but would say, if you do have it use it. When you are tired rest. Use any support/help available. You deserve it.

I’m 75 and if I can do it you can. I find treatment days relaxing as I get to sit and chill with a book or crosswords.

Please keep in touch if you’d like to and let me know how you get on.

I really hope this helps.

Warm regards
Jo

[jomjo75Participant]

That offers me hope. Thank you.

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