[MothasParticipant]

Good luck Dai.

Eye drops a great idea, don't rub your eyes and transfer bacteria…

I still have infections in both my eyes and won't be allowed to proceed to my SCT until they clear. I've had them for over 2 months.

tom

[MothasParticipant]

As for new drugs, I believe that trial or no trial, myeloma patients should have the option to benefit from new treatments as soon as they are licensed. What have we got to lose after all.

I was put on the PADIMAC treatment which is a trial at UCLH, without officially being put on the PADIMAC trial.
Don't ask me how that works, I have no idea!

It does seem that it really depends on where you end up having treatment.

[MothasParticipant]

This is a complex subject. As a researcher I can see it from the other side too (although not a medic).

Trials are designed to look for specific responses to specifically staged versions of myeloma, for the trial method to be rigorous and consistent only patients with certain symptom and treatment profiles will be admitted.

I've been told that there are no trials available to me at present because of my disease profile. I'm at a large research-based hospital so hopefully I will be eligible at some point.

As far as individual treatment is concerned, there are two ways of thinking about this. Individualised treatment pretty much exists already if you have private insurance. You have speedier access to new drugs and are more likely to be put on maintenance treatments. It's a cost issue and also a post-code issue. Myleoma treatment is a post code lottery.

The second point is that individualised treatment is coming in the form of genetically tailored therapies, that look at the specific myleoma clones active in our systems. It'll be the next step forward in treatment. Hopefully we'll all be around to benefit. 🙂

[MothasParticipant]

There's some truth in this for certain.
It's also a question of training GPs to spot and be aware of potential myeloma symptoms more proactively. Certain symptoms should raise red flags that lead automatically to immediate testing.

[MothasParticipant]

This is always a tricky one isn't it.

I had shoulder pain which was misdiagnosed by my GP as rotator cuff syndrome, which to be fair to him I displayed all the typical symptoms. He was going to refer me to an NHS specialist but because I was in such pain I opted for a speedier route and I plumped to see a 'top' private consultant instead. Who also confirmed it as rotator cuff syndrom and gave me a steroid injection which didn't help at all. It wasn't until I then went back to my GP to ask for an MRI scan that the awful truth was revealed.

Speaking to a young Australian registrar about this, he said it would never have happened in Oz, as soon as I had complained of pain, given my age and the nature of it, they would have done an MRI scan for possible cancer immediately. Different treatment protocols set up to catch problems earlier. GPs need to be trained to watch out for the symptoms and act sooner than they do.

I have to say, once I got past the GP and on to a specialist consultant at UCLH my treatment has been excellent. I do think you have to be proactive though, chasing things up etc. It's important to be an 'active' patient. It's almost like having a job.

I've considered putting a complaint in, but to be honest I've got enough on my plate as it is.

I do sympathise though and good luck with it.

Tom

[MothasParticipant]

Thanks for representing the community Andy.

[MothasParticipant]

Hi Nicki
I'm really sorry for your loss. 38 is no age and is young to develop myeloma.

Myeloma is a horribly complex disease that is really a collection of different myeloma forms (clones). It has multiple impacts on different parts of the body so can interact with pre-existing conditions too.

The disease and the treatment also hammers the immune system and makes us all very susceptible to infections.

I would be asking searching questions of the consultants to find out what happened.

all the best

Tom

[MothasParticipant]

Hi Jane

I was given aqueous cream when I had my radiotherapy last year and told to apply twice a day after each session. I did have an area where it did burn but that healed after a few weeks at the end of treatment.

What other treatments have you had? If your immune system is compromised due to treatments that may be a contributory factor to the burn not healing.

[MothasParticipant]

Always heading vertically Tom, always.

[MothasParticipant]

@Eva

thanks Eva, I suspect (and fingers crossed) that coming off dex is the thing behind this. I've also started taking a bit more strenuous exercise. I'll have a clearer idea tomorrow after seeing the onc.

Thanks to everyone who's replied it has eased some of the anxiety.

t.

[MothasParticipant]

Thanks Michele most helpful and congrats on your remission. Looking good and long may it continue.

[MothasParticipant]

Megan thanks for the reply that's really helpful.

My pain, well it's more discomfort than anything and is less than prior to the treatment, I was just getting that horrible paranoia that it meant that PAD might not have worked.

I think also that Dex can mask pain and discomfort and when you get off it, the discomfort can re-emerge.

thanks again

tom

[MothasParticipant]

Thank you for passing on this sad news.
My thoughts are with his family, friends and loved ones.

I never met Keith but he always contributed thoughtful, supportive, informative posts to the community and will be missed.

Tom

[MothasParticipant]

Hi Paul, I was on PAD so I had adriamycin in place of cyclophos.

I had a bit of a dry nose on occasion with velcade and when I blew it I sometimes snotted out a bit of blood.
I also got eye infections.

I would talk to one of the specialists or nurses on this site.

[MothasParticipant]

Helen, the relapse sucks.
Of course you're all over the place.

As far as treatment is concerned I think the consensus in the UK is to go in hard and early as possible. I'm showing nothing in my bloods, urine or BM but they're basically giving me the full bazooka.

big hug from me too.

tom

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