[jomjo75Participant]

Great news. Makes it all worthwhile.

[jomjo75Participant]

Hi Najmah

I constantly battle with constipation which is not surprising as it’s listed as a common side effect on every pill and potion I take. In my case morphine has been the biggest culprit but several other drugs contribute. I’m not aware of any particular side effects caused by my monthly bone infusion though.
Like you, I’ve been prescribed laxative powders and these do require me to drink at least 2.5-3 litres of water per day, not as easy as I’d first thought! I also, very occasionally, take dulcolax. Prune juice can be effective too. Mainly I get through by increasing my intake of leafy green veg and raising my fibre intake because I don’t like the idea of regular laxatives.
Sounds like you’re already doing as much as you can and you may well find that things eventually settle down.
Keep hanging in there.
Jo

[jomjo75Participant]

Thanks for that Bernard. Always great to hear from someone who’s gone through months of brutal treatment and reached the other side.

You are right in that the survival rate is much improved these days and certainly the rate at which new treatments are appearing tells me there’s a lot of research going on.

I’m taking one day at a time and keep reminding myself that whilst I can’t yet see the light at the end of that tunnel, I am confident it is there.

Long may your remission continue and thank you again.
Jo

[jomjo75Participant]

I’ve checked the other boards so can only think I didn’t submit it. No matter.

How lovely to celebrate a Golden Wedding anniversary. Many congratulations to you both.

My husband is still battling on thank you.

I’ve had about 10 good days and begun to feel human again. Respite from side effects makes all the difference and fortnightly treatments seem to have made the difference. Life is good.

Bloods taken earlier so 🤞🏻for further improvement.

[jomjo75Participant]

I responded to this last week but can’t find my message???
Have you received a recent message from me? If not, goodness knows where I posted it 😂

[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.

[Author]

Posts