Hi
Wondering if anyone is in a similar situation as I am regarding travel insurance.
I am on the RADAR trial from when I started Myeloma treatment—-that was in 2022.
After induction therapy,stem cell transplant and immunotherapy I’m now in remission , which is brilliant—and have been for 2 years . Since then I haven’t been on any treatment just monthly monitoring of bloods
We would love to travel more but so difficult getting insurance. The stumbling block seems to be that I’m on a trial,even though I’m well and independent. We last went on family visit to USA when All Clear insured but it cost £2500 for annual cover. Many companies wouldn’t insure as I am on a trial
Has anyone else encountered these problems of being involved with trial and trying to get reasonable travel insurance
Best wishes Pauline
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Afternoon boisvert.
I hope that you are as well as can be expected.
I’ve got a couple of questions to ask regarding where you are at currently.
1 – What was the trial drug that you were taking with Lenalidomide?
2 – Since leaving the trial and the support given by the Nurse, have you hooked up with any MacMillan Nurses?
The reason I ask about your trial, is four years is good going! I was on the Myeloma XV (RADAR) trial and had to withdraw, after two cycles, as I was refractory to Lenalidomide, which I’m sure you know is one of the main Myeloma maintenance drugs. I then went on to have two cycles of VDT-PACE, prior to two Autologous Stem Cell Transplant (Yes, I like doing things in twos).
When my Paraproteins began to increase again, my Consultant said that she would like me to start Belantamab Mafodotin regimen (One of the first patients to receive this in Lincolnshire County Hospital Trust).
The bottom line is, you must not feel alone! My Consultant, the MacMillan Nurses, Myeloma UK literature, and forums such as this, have all been invaluable and should all be able to support you as needed.
I have just started Cycle 3 (of three weekly trials) and will be keeping people informed on how things are progressing and any challenges I personally encounter along the way.
Several things that I have found is:
My cycles are three weeks long and require several day trips per week, to the hospital.
You will be required to have a baseline eye test and subsequent follow-up checks at the end of each cycle
The Dexamethasone may well play havoc with you sleep pattern (although you possibly know that from your trial.
Kind Regards,
Pedro
Hi Nordic.
Sorry for the delayed response!
I see that like me you had to drop out of the RADAR Trial too. I did, because I am refractory to Lenalidomide, so I’ve not been able to revive this as a maintenance drug, since I received my two SCT’s. You’ve mentioned side effects and a SCT. When did you have this, or have you had two?
I’m on day nine of my second cycle. This started with NO Belantamab Mafodotin infusion, just the Velcade (Bortezomib) and Dexamethasone (understandably, Christmas and the New Year, have also had an effect on what I’m being given) I will say that the Regimen I’ve been given, does vary from the one you’ve referenced Nordic, as mine is EIGHT (8) months of three-weekly cycles including the Velcade and Dexamethasone (if it works) before I go onto cycle nine onwards, which is just the Belantamab Mafodotin, as a three weekly maintenance infusion.
On another note; I have now copied a form that I was given initially for side effects, as I do have a tendency to unintentionally, miss some more minor side effects.
One I am suffering from is a lack of sleep as I’m getting anywhere from two to four hours (if I’m really lucky) a night. I’m now typing this at 02.15! I have mentioned that I’m also getting sore (itchy) eyes to the Nurses proving my chemotherapy, sometimes this is a lot worse than others. This is important, due to the potential side effects of Belantamab Mafodotin and I will talk to the Ophthalmologist, when I see him on the 2nd of January.
Anyway, please keep me and others posted on how things progress. And finally, the best of luck with your future treatments.
Pedro
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This reply was modified 1 month, 2 weeks ago by
pedro16.
I just started on 1st Belantamab Mafodotin along with velcade and dexamethasone over a weekly course of 6 months(if no problems) after Radar trial drugs stopped working for me. Hopefully this new treatment will provide a longer remission time, been told this can be a least 3yrs So far have had no signs of any side effects of this new treatment. I hardly never had much much of any sides effects apart from some fatigue from all treatments chemo and then Stem Cell Transplant since April 23.
Hi Rabbit.
Removing the carving knife from me at Christmas, would entail someone having to wrestle it from me. That said I might invest in a butchers apron and cut proof gloves. 😂
The Belantamab Mafodotin means that I’m having three weekly checks on my eyes and have to have drops in them four times a day. I suppose it’s good news as it has been caught early, but the Ophthalmologist believes that I have the early stages of Glaucoma. Oh well, it’s just another ailment to add to the list.
With the low platelet count, below ten and they said that they would infuse me, but as my last blood test result showed an improvement (24) I was ok. The second cycle there’s no Belantamab Mafodotin, just Bortezomib and Dexamethasone. You could be right with what you said about the platelets and it’s something that I will ask my Consultant when I see her next.
I do know that NICE have been very specific about treatment breaks and when treatment will be allowed to continue, or stop.
I’ll try to keep you (and others) updated as I get further into this second regimen of eight three weekly cycles. Then it the ninth onwards just Belantamab Mafodotin as a maintenance. Well, that’s if it works for me, as I am rather problematic (had to withdraw from the RADAR Trial, Refractory to Lenalidomide, two stem cells transplants giving me eighteen months) it seems never ending, but I’m not about to give up!
Pedro.
Hello, yes I chose to go on the new Blenrep treatment that has just been approved by NICE in June. Unfortunately this didn’t work for me so I am now on a salvage treatment called DT-Pace before I need to choose another line of treatment in 3 months.
It is making these decisions that feels so huge but we can only take advice and do the best we can.
When first diagnosed the shock of it all is tremendous and the more I learn the more pressure I feel to make an informed decisions.
Listen to your team but remember that literally no two people will go down the same road, there are so many good treatment options out there now.
I felt so well on RADAR, I only wish it had kept me in remission longer, as other people have.
I feel supported by a wonderful consultant and specialist nurse team.
Hello, I don’t go on here often mainly because I have no idea how it works!
I did have an email tho with your question.
Yes I was on the RADAR trial right from when I was diagnosed. I felt so closely monitored and the specialist team were absolutely brilliant. I had my transplant Sept 23 and then after the 100days continued on maintenance. Life felt pretty normal for about a year.
Then I was told in June 25 that my numbers had been rising for the previous 3 months and so I’d relapsed and had to come off the trial.
I have to add that I was on the high risk pathway of the trial.
I guess I decided on the trial as I wanted to get the very latest available treatment and I sensed that my consultant and team really thought this was best for me.
It’s so hard isn’t it to make such a decision when you’re still reeling from the shock. I think I went along with what I thought sounded the most promising, and I’d read of people with very long remissions.
I would still join a trial given the opportunity
Hi, this has come completely out of the blue after routine blood test, my paraprotein was 31.14 kappa igG and my mri and bone marrow biouall clear, it’s my FLC that has surprised them at 275,, so they are having a MDT meeting today to see if I would benefit from treatment, I’ve been given booklets for the RADAR trial, and don’t know wether to go for that or standard protocol,, I hear daratumbab is great but it’s not on the trial? And there is more info about survival rates on that, than
On the RADAR, I’m so scared
Hello are you still on here? I’ve just been diagnosed and offered RADAR, I don’t know wether to stay with tried and tested or try the new regime, only found out yesterday
Hello to everyone,
I’m a 53 y/o male who was diagnosed with an MGUS about 18 months ago, after routine blood tests. I’ve since been having regular blood tests and visits to see my consultant.
In August of this year, I started having rib and back pain and a few infections that were difficult to shift. After several tests, it seems things have progressed and I was diagnosed with Myeloma on the 24th October, so relatively recently and it’s all been a bit of a whirl!
I start my induction treatment on 14th November. I’m naturally a little apprehensive as I’m not entirely sure what to expect, but the consultant and nursing team have been fantastic so far. I’ve also signed up to the RADAR trial.
I’ve been lurking on the forum for a while, but thought I’d better sign up and say hello, as I’m sure I’ll have questions in time – although I’ve found lots of helpful information here so far, so a big thank you to all that post here.
I look forward to being able to contribute to the forum as I progess through my journey.
R.
gcParticipant
Hi. My situation a wee bit different. I was diagnosed 2023 and had stem cell etc but never achieved full remission. At diagnosis MRI and CT showed compressed fractures and lytic lesions. I am on the radar trial and now on a maintenance programme of Lenolidomide 10mg for 21 days and an infusion of isatuximab every 4 weeks. My myeloma markers are stable…long may that continue.
However my back pain worsened. My consultant reassured me it was not my myeloma but it could be another lytic lesion or just the ones there becoming more active. I could have done something to aggravate my back. We decided not to ?have another MRI as if it is lytic lesions they couldnt do anything as my bones are bad.
Having said all that I manage to lead a pretty full life- a bit different from my old one but I do live life.
I hope you can get some answers and wish you well.
gcParticipant
Hi
My situation is different to yours as in I’m older, now 70 and dont have children to worry about.
I had my stem cell transplant in June 2023. I’m high risk so as expected I didnt receive full remission. I have bone damage, bone lesions and compressed fractures hence a bad back…but I’m glad I went ahead with the transplant. Im on the RADAR drug trial so am still under close supervision.
To answer some of your queries.
I had almost shoulder length hair which I got cut short…discovered I had ears!!! I had a wig which I didnt like, it was itchy so got a selection of headgear- theres a big choice online. However when my hair began to thin and fall out I shaved my head and didnt regret it but I can understand that might be scary for your kids.
My consultant isnt keen on supplements as in pills or vitamin pills etc.
However I asked to be referred to the hospital dietician who was very helpful with tips of what to eat etc.
After the recovery time post SCT I went to a couple of nutrician courses at my local Maggie’s centre, again very helpful.
This past while I’ve been making home made smoothies to try and boost my immune system. Personally I dont like veggie/ green ones but really enjoy fruity ones.
I use some fresh fruit but often bags of frozen fruit from the supermarket. I make them with either fruit juice (not from concentrate) or coconut water. I have no scientific evidence they work but I feel good and touch wood my propensity to catch a cold seems to have diminished.
Good luck with your SCT – everyone is different but personally I think if you listen to your own body, that’s a good guide. My only other piece of advice is to take any help on offer either from friends and family or professionals
Take care.
Hi
Thanks for your reply. Sorry for the late response I was waiting until we had his appointment. He is now classed as ultra high risk as he has 2 high risk – gaining of 1q and FDFR which when I have looked is t 4,14, so it sounds very similar. He starts the RADAR trial in 2 weeks.
gcParticipant
Hi Dazz
I am on the Radar XV trial. I am high risk so on that pathway. SCT did not give full remission but it did help.
I was then put on maintenance treatment of 10mg lenalidomide for 21 days and a week off and isatixamub via a drip.
I was given this weekly for 12 weeks then reduced to fortnightly. In November this was reduced again to monthly.
My bloods have remained stable and myeloma markers have also been stable. My back gives me gyp but that’s a separate issue.
I had no significant symptoms other than
The day after treatment I get a bad headache
I sometimes get flushes- bit like the menopause days!
I do have a day- usually 2nd after treatment where I am like a rag doll.
All of the above have been easy to cope with and worth it.
Now, on monthly there was a slight increase in symptoms but the rate of the infusion had been increased. My team adjusted it and so far so good. Not having to travel to hospital so frequently has been great- can plan a wee bit further ahead.
Everyone is different but I hope some of this helps.
ggParticipant
HiBrewy
I had my sct cancelled due to a severe reaction after 4 cycles on the RADAR medical trial. This was supplemented with a further 4 cycles of chemo in which because I wanted have the lenalidomide I had to provide that myself privately as the NHS would not supply it as part of my ongoing treatment.
result was a success, I have now had 13 months of full remission and things are still good.
My consultant was very keen for me not to take any maintenance drugs whilst in remission as the concensus was that the effectiveness of lenalidomide as maintenance will gradually reduce and by the time I get to the first relapse it would be totally ineffective, thus removing an important drug which would be part of the regime for the relapse treatment.
Like you things are good for me at the moment, and long may it last.
Take care and I hope things stay good for you.
Hope this helps,
Graham
