[jomjo75Participant]

How lovely is that.

[jomjo75Participant]

Good morning

It’s so good to hear how well you are doing and to read your comment in how quickly the six months appear to have flown by. I admit that for me they dragged but, now I look back over 8.5 months and wonder where they’ve gone? Although my experience was more brutal than yours, I can’t remember most of it.
My Dex was administered in a slightly different way from yours in that I was taking 10mg half an hour before treatment so only fortnightly in recent months. That has just been reduced to 8 mg fortnightly.
Sorry to hear about your severe pain and hope you have been given some decent pain relief. I had severe hip pain early in my treatment and was convinced that not only was it muscular but, that it was a side effect. Eventually, after an X Ray and MRI I was believed and my consultant stopped the Velcade and within a few weeks the pain was gone. Sounds as if your pain has been diagnosed as bone related so I’m crossing my fingers that your MRI will give an answer.
How wonderful that both of our consultants have used “excellent” to describe progress. I’m definitely pleased that I opted for Isa-VRD!
I’ve turned a corner, especially since my Lenalidomide was stopped and life is good.
Long may the good times continue for us both and to anyone else reading this, there is light at the end of the tunnel.
Jo.

[jomjo75Participant]

Hi Najmah

Almost a month since your last post so wondering how you are feeling now you’re further down the line? I think you are well on your way to finishing your 6 month of treatment.
How are those paraproteins and serum light chains doing?
In other words, how are you?
Jo

[jomjo75Participant]

Nobody has mentioned an injection here in my area. Sounds like you’re really pleased to have shorter treatments so I’m really pleased for you. It’s certainly another advance in treatment.
Have to admit that I prefer infusions because my tummy is still covered in bruises from the Velcade, even though I haven’t had an injection since April! I’ve been on anticoagulants since I had a PE at the end of last year which means that I bruise more easily and the bruises take longer to fade.
To be honest, I also see the hour or two spent at the day centre as time out. As the unit has a complementary therapist I often have a very relaxing reflexology treatment whilst there. The service is free too.
I’m still on fortnightly treatments and hope to move to monthly before too long so don’t find it too onerous.

[jomjo75Participant]

That’s wonderful news!
Well done for sticking with it.
Jo x.

[jomjo75Participant]

Been through a bad patch, unfortunately; side effects again.
I’m now in a good place. My numbers are good overall and my consultant has stopped the Lenalidomide which was, I believe, causing most of my side effects. She is very pleased with my progress and says I’m now on maintenance only. I’m still on fortnightly infusions but, she anticipates I’ll move to monthly before next year. All great news.
The consultant also confessed that the team’s way of using Isa-VRD is to hit the patient hard from day 1 and, if the patient seems able to cope, continue at that pace for the first 6 months. It was brutal, though now it’s over I’m already forgetting just how bad it was.
I think I’m now settled into a pattern of 3-5 days of side effects following infusions and then feeling better. Fatigue has been the main problem. I’m now in a really good place; baking and going out more (heat allowing) so long may it continue.
Thank you for caring.
How are you and how are side effects?
Warm regards
Jo

[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.

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