Partial Remission

[jomjo75]

Hi Najmah

It’s great to hear that you are doing so well and I hope the MRI gives the result you’re hoping for. I feel that Isa-VRD does its job extremely well.
Hadn’t heard of the podcast you mention so I’ll have to listen sometime soon x

[brightstar75]

Try not worry about the wording to much.I was told I had remission post stem cell transplant but soon realised there is no real remission with Myeloma. Once I made peace with that the world seemed a less disappointing place to be.These days every treatment I have which stops me have to attend hospital for weekly appointments is a major bonus.

[jomjo75]

Excellent advice brightstar75, thank you.
I’m no longer worrying about when I will move from fortnightly to 4-weekly treatments and just enjoying each day as it comes. I’m also reminding myself that I am taking fewer maintenance drugs now which has to be a good thing.
How often do you attend for treatment now?
Kind regards
Jo.

[jomjo75]

Hi najmah

Thank you for the podcast recommendation; I’ve listened to three today and found them very interesting.
Warm regards
Jo.

[najmah]

Glad you enjoyed them Jo. I find those two doctors really easy to listen to and they explain the topic so well.

Been for my treatment today, the start of cycle 5. My cycles are 6 weeks long, are yours too Jo? I’m finding things much much quicker now I’m having the Isatuximab via injection, I was in and out in just over an hour today (and came away with the usual carrier bagful of drugs as you do at the beginning of each cycle😂).

Najmah

[jomjo75]

Good afternoon Najmah

In answer to your question, my cycles are only 4 weeks so it would seem that the Freeman protocol is to go more slowly than here. My consultant did say, once I was feeling better, that her department’s protocol is to hit hard from the beginning and see how each patient copes. Would have been good to have the choice!

I should have been in 4-week cycles until cycle 7 but I responded well by cycle 4 so have been on fortnightly (2 treatments per cycle) since May. I still come away with a bag of drugs at the start of each cycle but, it is a lot smaller now that I no longer take Lenalidomide nor Rivaroxaban (anticoagulant). Also, I now get my anti-nausea and Adcal via my GP.

I haven’t been offered Isatuximab via injection but, bearing in mind I still have the tummy bruises from Velcade, which stopped in April, I’m in no rush to have more injection. I can, however, see the appeal of shorter treatment sessions.

Do you take Famotidine or OMEPRAZOLE? I can’t decide which works better for me 🤔

Jo

[newscan]

I am glad to see this thread as I also had a bad reaction to being told that I will not go down to a level where they can say remission and the partial response is still quite high results unfortunately. Other health conditions have got in the way, renal and surgical, which have knocked me for six as they pause lenalidomide each time and lowered the dosage. I feel it is endless (diagnosed nearly two years ago.). I cannot have STC because of my age either. Everyone looking after me is lovely but their answers are vague if I ask for a timeline.

Good to know that I am not alone. Looks like Chemo is going to go on for a long long time. Then I wonder what will happen when we are too old to drive to the hospital. No direct bus route.

[najmah]

Sorry Jo I’ve only just seen your message from the 14th. I’m still taking Riveroxiban because I’m still taking Lenalidomide. I wasn’t offered Famotidine only Omeprazole and I find that works well for me. I only take it in my steroid days which are Tuesdays and wednesdays. I see the consultant on 10th November and he said he might take me off the steroids completely at the end of this cycle.

It’s good that you are now on fortnightly sessions, looking at my schedule I start fortnightly too mid December, I won’t know what to do with my spare Tuesday every other week 😂. Do you know when you will go onto monthly treatments?

Hello too Newscan, you are certainly not alone. It’s very reassuring to read of everyone’s experiences on these boards and also gain valuable advice. Sorry to hear that you have other health problems that are getting in the way of your treatment. We drive to the hospital too and all cancer patients get a free pass for the car parks. Those unable to drive can get free transport from a charity run taxi/mini bus service here called Daft as a Brush, maybe you have something similar available at your hospital?

[blobgob]

Newscan,

The Hospital should provide some patient transport which you can book in advance. Perhaps have a chat with the Haematology nurses about this.

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