[najmahParticipant]

Thanks Jo, how are you doing?

[najmahParticipant]

Hi Jo, haven’t heard from you in a while. I hope you are ok and your treatment is continuing to go well.

Regards,

Najmah

[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

[najmahParticipant]

Sorry to hear you’ve been through a bad patch Jo, I suspected maybe that was the case when you didn’t post for a while. However glad to hear that you are now in a better place and you are on maintenance only and will hopefully be moving to monthly by the end of the year. So the maintenance only has come around fairly quickly for you, I hope I’m the same. I know we’ve discussed in previous messages how horrified we were when we got the initial programme of treatment and it was for about two years! So has yours been revised now?

I am doing ok, experiencing a few more side effects now I’ve had 15 weeks of treatment. Luckily I’ve coped well on the whole. I’ve had some fatigue but my main side effects have come from the Dexamethasone. I take 20mg on Tuesdays and again on Wednesdays. They keep me awake a lot during the night then I’m usually awake for the day by 4.30am then I’m racing around like a mad woman all day😂 Also I’ve noticed on those two Dexamethasone days my face is very flushed and hot. Thursday and Friday seem to be the days I’m experiencing fatigue, some weeks not as bad as others.

Warm regards,

Najmah

[iluvsmmpanelParticipant]

Hi everyone,

My name is Luv Kalra, and I’m pleased to join the Myeloma Forum community.

I’m the founder of iLuv SMM, where I work in the digital marketing and social media services space. I joined this forum to become familiar with the community, learn from the experiences shared here, and understand how online communities can provide meaningful support and information to people going through difficult circumstances.

I appreciate the time members take to share their personal experiences, questions, and practical advice. Communities like this can be valuable places for people and families looking for understanding and peer support.

I’m looking forward to reading the discussions and getting to know the community. Thank you for welcoming new members.

Best wishes,
Luv Kalra
Founder, iLuv SMM

[najmahParticipant]

Hi Jo, Rabbit and everyone. I had my appointment with my consultant this morning and I just wanted to share the good things she told me. She said I’d responded remarkably well to treatment and already my Paraproteins were almost undetectable. All my other markers are good too. I am also more than happy that she has reduced my Dexamethasone from 20mg twice a week to 4mg twice a week with a view to stopping it completely by Christmas. We also talked about remission, she said she expected my remission to be 6-8 years and that when the time came there would be second line treatments available to me. So at 73 I was happy with that (maybe not so if you were 40 or 50!). She also said that Bortezomib (Velcade) has just become available as a sub cut injection. She expects it to be available at the Freeman within a few months and she would put me on that straight away. Which would mean a 5 minute injection instead of an hour and a quarter on a drip. So I came out of that consultation very happy!

[rabbitParticipant]

Hi Najmah,

That’s great! I’m delighted for you!

Regards
Rabbit

[najmahParticipant]

Thanks Rabbit,

I got a bit mixed up in my post there, it’s the Isatuximab that’s going to be available as an injection instead of an infusion. We all know that Velcade is an injection!

[jomjo75Participant]

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

[Author]

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