[bandityogaParticipant]

My husband Ian had a SCT in May 2015 and is now relapsing. His FLC are now 221 and elevating each month, bloods, kidneys are ok. We go back to our consultant in 4 weeks to find out the results of a new blood test (not quite sure what) to determine how active the myeloma is. He may also get a BMB. He had spinal compression and I’m sure the consultant is being cautious and hopefully Ian won’t have to have treatment for another while yet.

[mhnevillParticipant]

Hi Maureen
Keep hopeful. Do hope news for Ian is better than you fear when you go back to hospital.
Love.
Mavis

[rebeccaRParticipant]

Stay strong – there are still lots of treatments to try and hopefully one combination will get a longer lasting remission. As you know, nothing is set in stone with MM and how we react is very individual so whilst the last treatment wasn’t what you wanted it to be that doesn’t mean that the next one will be worse – Ian is not the “average” statistic, he is unique, and just needs to hit upon a combination of drugs that works well for him…it has been done before by others so don’t rule anything out and stay hopeful x

[bandityogaParticipant]

Thanks Mavis, trying to stay positive and hopefully Ian has more time before treatment.

How are you?

Maureen x

[bandityogaParticipant]

Hi Rebecca

Good to know you are still in remission, we’ve been on this journey around the same time.

I am staying positive and as you say the consultants will find a treatment which will work for Ian. There have been a lot of advances in Myeloma in the last few years and more treatments so I am hopeful and we are living life to the full before treatment starts.

I will let you know the results of his tests.

Maureen x

[bandityogaParticipant]

Ian’s FLC rose by 70 this month but all other bloods, kidneys etc ok and he is feeling well with no pain so no treatment yet. The consultant says that if the FLC rise steadily he could have some time yet until treatment starts, so we are relieved.

He will be monitored monthly until any changes occur.

[peterlParticipant]

Hello Maureen,

All round there seems to be some good and positive indications for Ian. The fact that he’s painless and his kidneys are ok, I would say are really good signs. And I can only echo what previous messages have said, ie it’s finding the right drug cocktail that suits Ian.

Unfortunately, the latter appears to be trial and error and individual in the extreme. So, I wouldn’t be too concerned if particular combinations appear to fail, it’s then onto the next options.

It would be interesting to know what the trends, or step increases in LCs trigger further treatments?  If Ian’s LC trend increase by say 100, month on month, at what stage is it considered unacceptable?  I don’t know if there are clinical guidelines regarding this? One would hope so, but it does seem to vary between individual consultant’s interpretation?

Very best wishes to you and Ian,

Peter

[bandityogaParticipant]

Hi Peter

When Ian relapsed the first time, he started treatment when is FLC reached 1000 but as you say, every consultant is different. I did ask about a PET/SC scan but the consultant thought it was too early and wouldn’t show up very much. If Ian starts to feel pain or there are any changes in his bloods, kidneys etc then we will press for a PET scan.

I watched a video from an info day which one of the consultants stated that there were no benefits from starting treatment early.

Maureen

[peterlParticipant]

Hello again Maureen,

Thanks for your reply. One would think that a crucial bit of data regarding the LC level at which treatment re-starts would be carved in stone, in some NICE www backwater!! But evidently not. Leaving this to individual consultants is probably due to the other problems with mm, like calcium, anaemia and bones. Again it’s the problem of the individuality of this nasty disease.

We think mm is very bad, and it is… But one of our close friends has lung and liver cancer and this week we saw him and he now has four additional tumours affecting his brain. These will affect his sight and balance. It’s truly horrible to see how he’s deteriorated over the last month. The reason I say this is because he had a pet scan two weeks ago. He told me that he has a radio active infusion, then the scan, and it shows up lump tumours yellow. He said he saw the results and he glowed like a yellow Christmas tree.

I don’t know about these scans, I’ve had a ct scan, but not pet. I understand that pet scans are good at showing up lump tumours, but didn’t realise they are good for mm?

very best wishes again, to you and your husband,

Peter

[andygParticipant]

Hi Peter.

My understanding of pet scans is that they’re quite good at showing up active lesions but should be seen alongside mri scans for a complete picture.

Every day is a gift.

Andy

[peterlParticipant]

Hello Andy,

That’s great if they show up lesions. I’ve had mri’s for that…  I don’t suppose you know which scan gives the most detail.

Thanks for your post, and best regards,

peter

[stanley-1960Participant]

Hi Maureen,

Not been on for a bit. Please pass on my best to Ian and hope treatment is a long way off.

Stanley

[bandityogaParticipant]

Hi Stanley

Hope all is going well for you and you are enjoying your holiday in Gran Canaria. We love Puerto Mogan, it is beautiful and quiet.

Ian’s FLC rose again and now at 441. He is having an MRI to rule out any bone damage in his spine. He did have a cold and he also stopped taking tumeric. I wonder if this is related to the rise in his FLC. All other bloods, kidneys etc are fine so no treatment yet and back to the consultant in 5 weeks.

Maureen

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