[mummymoParticipant]

Hi All, well I had my last subcutaneous chemo injection yesterday and will have my bone marrow biopsy on the 5th December but if my paraproteins are anyth8ng to go by the chemo mix has worked well. Down from 17 to 4 as of last week, great news. My stem cell harvest is on the 12/13th December. I have decided to hold off on the transplant, which would have been in January. I have made radical changes to my diet, my home life, my exercise and my mental state and just want a chance to see if I can keep the Myeloma at bay with these changes. Apart from the fatigue on steroid drop off days I am feeling amazingly well and very positive that this is 5he right route for me at this t8me. The harvest and storage of my cells whilst they are at such a low Myeloma level gives me an insurance policy should I need it down the line as they can keep them for an indefinite amount of time. We will see what happens. Looking forward to getting my brain and energy levels back. With regard to steroid drop off, my doctor also halved the dose and I tried sloping off by taking 10 tabs on the morning of chemo injection, then three the next day and two the third. It worked much better as you don’t fall off a cliff on day three! My haematology doctor was happy for me to continue this for the remainder of the cycles, it really helped. I highly recommend finding yourself a good acupuncture practitioner. I use a Five Element practitioner and it has received my symptoms enormously and kept my liver, spleen and gall bladder talking to each other and all systems in harmony. I literally go in feeling knackered and skip out full of energy. I’m hopeful about the future and feel positively charged with hope. Good lick to you all.

[znabParticipant]

Hi Mo,

I asked my doctor if I had to have the SCT, he said if I didn’t I’d be off the study. I’m high risk and as far as I understand it, this study gives me a much more tailored maintenance then if I went for standard NHS. I’m not sure though, all a little bit confusing. I feel well and my bloods are coming back in to the correct ranges but not sure how long this would be for. I’m 43, maybe it’s better to do it now while I’m younger and healthy. I want to make an informed decision though rather than just being told what to do 😀
What diet changes have you made? I’ve given up sugar except natural sugars (honey and fruit are not the enemy!). If ever you’re craving chocolate and like dark chocolate check out honey cacao ltd.

All the best.

[znabParticipant]

Mich05, it’s been nearly 2 months now and I feel SO much better. SCT is scheduled for 3rd Jan. Will keep you all posted x

[znabParticipant]

I’m sad to say that due to a relapse much sooner than expected I am off the study. My blood and bone marrow tests were all good but I noticed a lump under my collar bone and a PET-CT showed that the myeloma is still quite active. My SCT has been postponed as I try a new chemo treatment.
I’m glad I took part and will have one last bone marrow biopsy for the study in the hope that it might help others.
Wishing you all much success xx

[mummymoParticipant]

I’m so sorry to hear about the relaps Zainab. It must have been such a blow. I’m in the process of preparing for SC harvest and although my bloods are good I’m waiting for results of bone marrow biopsy and have a CT scan booked for next week. I am praying that the news is good. I will be off the trial after the harvest as I’m not planning to go ahead with transplant until it’s absolutely necessary. I really hope they come up with an optimistic treatment plan for you. Sending strength and hope to you Zainab. Stay strong and make the most of every day. I hope you are feeling well and managing to stay positive.
Kindest blessings
Mo

[mich05Participant]

Hi Zanaib ,
I am wishing you all the very best with the new chemo treatment and like you say From reading others stories on here sometimes a change of direction is required. This really isn’t an easy journey but there will be better times ahead.

[znabParticipant]

Thank you both 🙂

[mulberryParticipant]

It knocks the wind out of the sails when relapse occurs, especially during induction when you expect the next hurdle to be stem cell transplant. It’s not that unusual to have to have a second line during induction. I’m hoping CAR-T and BiTES will be approved & available in UK soon and that they may offer longer term solutions for us all, but especially for those with the more tricky myelomas.

[t1825Participant]

Dear all, just been diagnosed and wanted to know how you guys are doing on this RADAR trial. Hope all is going well with everyone.

[mich05Participant]

Hi t1825
Hope you are getting through after diagnosis which is a very tough time. I am on the Radar trial and just completed SCT. It was a hard decision to make but at the time I decided to go with my consultants advice for me. I have got this far and am very positive about the future.
All the very best

[nordicParticipant]

When I started this trail I only completed 1st week as I caught flu which put me in hospital for 8 days and them home rest for another week. Restarted the trail from week 2 and I needed to have some units of blood during week 2-3 of trial I am currently on cycle 2 week 2 of the Radar trial and when you hear the words chemo you think of the bad side effects that chemo can entail but I am very surprised that I have had no side effects from the treatment (so far). I do not know what my current levels are but I do feel a lot less tired and have a bit more energy compared to pre trial. Hopefully my myeloma can be pegged back to low levels and stay there for a long while.
Best wishes to all

[iangray67Participant]

I’m also on the trial, I took me about ten minutes to decide, my thoughts were that its got to benefit me in both the short and long term, also it would hopefully help others in the future which again would hopefully include me.

all the best

[gcParticipant]

I’m also on the trial. I made up my mind quite quickly to give it a go. I’ve finished induction. It was going really well until I caught Covid (again) and then developed a chest infection. Although I’d been really careful this taught me I really was vulnerable. However I recovered and treatment resumed.
I’ve had my stem cells harvested and providing the next round of tests are positive should have my SCT at the end of the month. I’m apprehensive about it but I’ve got this far so will just keep on going!
Good luck to everyone on this journey.

[spk2021Participant]

Sorry I’m more than a year out of date on this thread but have just joined the forum and finding it helpful to share experiences. I shied away earlier on in my diagnosis and treatment for fear of information overload and tbh, not wanting to feel part of a ‘club’ (of myeloma sufferers). I hope this makes sense. I joined lately as I’m having a bit of a tough time physically and mentally, and feeling very isolated.

I joined the RADAR trial in January and as a high risk patient am now half way through the consolidation treatment which is part of a high risk pathway. My response after induction cycle 1 was remarkable and after the 100 post-SCT recovery period, I was MRD negative.

I am wondering how others are getting on with treatment under the RADAR trial

Best wishes to all.

S

[spk2021Participant]

Postscript to my previous message as I had not noticed there was a second page!

In case you do read this Zainab, I wanted to say how sorry I am that you had an early relapse. I wish you well for your current and future treatments, whether on or off trials.

Kind wishes

S

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