[PhilipandfionaParticipant]

Hello Annette

Thank you for your ray of hope. I sincerely wish you get 45 more years with it.

Yes, Eve, the Marden did the tweaking to get velcade as maintenance. It didn’t last long, but was better than nothing. x

[StuartParticipant]

Hi Fiona
my wife is a patient at the Marsden and has been on Revlimid now for four and a half years.
If one of your team in Brighton is Dr Kevin Boyd then you are in good hands. Kevin was part of the prof’s team at the Marsden and so has a lot of experience of MM.

Good luck

Stuart

[PhilipandfionaParticipant]

Kevin isn’t one of the team, he IS the team.
Thanks for the vote of confidence in him

[StuartParticipant]

Please given Kevin our best wishes ( from the couple from France) as we always made a point of seeing him when we went to the Marsden. We had every confidence in him, and I’m sure he will do a good job of looking after your husband. Add to that the fact that he will be working in conjunction with the Marsden will mean he will get the very best care available. Treatment tailored to your individual requirements. Do you have an individual contact at the Marsden?
all the best
Stuart

[PhilipandfionaParticipant]

We did, we saw prof morgan. Don’t know who we will see next time we’re there.

[eveParticipant]

Hello Stuart

Just popped in on Fiona,s post to say hello! We met at the Marsden by the car parking machine that eats money !!! Lol

Slim is now on Palliative care,the Velcade worked again,but blocked arteries were the on going problem,which resulted in other issues.

Sorry for taking over your post Fiona,hope is a wonderful thing just keep grabbing as much as you can,attitude of mind can take Philip a long way.

The children should have a lovely time in Deal heat wave weather expected. Love Eve

[PhilipandfionaParticipant]

Hi

Sorry Stuart, i completely forgot to pass on your best wishes.

well as we thought, Philip will move to Revlimid next week. What we didn’t expect was Dr Boyd implied that the evidence for the benefits of an allo outweighing the risk are not proven sufficiently for him to recommend it. I am not sure why. he said he was at the european haemotological conference recently and spoke to Dr Kwee from UCH london, and said she does not do allos at all now, but sometimes refers people for them, as a first option. He thought that the only place really doing lots at the moment is in Leeds. he said that the mortality /morbidity risks were so high, and the fact that you can’t predict whether you’d end up lucky, or dead, that there are few people for whom they are suitable. A complete change from his point of view last time. i am pleased that he’s willing to learn and change his opinion as the evidence appears, but it does add to that rollercoaster feeling!

So we have arranged for an appointment at the Marsden as we’d like a consultation there, but it seems that an allo may be off the table, particularly as the Marsden were against it last time it was mentioned.

That’s almost a relief as we were dreading it, but he then threw in the bombshell that he doesn’t expect the revlimid to last much longer than a year, and pomalidomide less than that. He said he’d expect to get Philip 2 years but can’t really predict much more.

I so so so hope that there are some more drugs around soon.

[eveParticipant]

Hi Fiona

Two years is a long time in the Myeloma Bubble,time for new drugs to come on and advancement on ideas,never forget everything is just an opinion!!!!

The say you have to put your trust in someone,put your trust in each other Philip to make the most of what every lies ahead,and never never give in,and you Fiona to make sure every day is not sad and stop worrying about tomorrow!!,you cannot change anything,but if you have Faith in each other it will take you both a long way.

If you think to far ahead it will frighten you,lock the myeloma away as much as possible,and make the most of now,I wish we had done more,but you get scared to wonder far in case of infections, looking back I think Slim would have preferred to have had more quality time,than keep trying,but this is all with hind sight now,it is very much an individual decision
Plus you have young children and you never know a cure might be round the corner.

No one gave us the facts of high risk and non Secretor ,it’s not a good out come for trials or chemo as when the drug is stopped it comes back quickly,but that’s another story I often think if we had known earlier,would we have said no to treatment and just taken a chance,we would have had quality time all be it a small amount,instead we have complication from the treatment,
If you come to Deal let me know,it does depend on Slims condition as he is now on a driver under palliative care.

My best Wishers Eve

[andygParticipant]

Hi Fiona.
I was put forward for an Allo over 2 years ago because I didn’t respond to any treatments. At the time it was regarded as a matter of urgency. A match was found and detailed blood analysis was done. Unfortunately the match wasn’t exact and I was told though the mortality rate was 20% in this case I’d probably not make it out of hospital! As this was the only match out of the whole register the Prof told us to go out and enjoy what we had and he’d see me again when things went seriously wrong.
I ended up on Revlimid for 22 cycles and have now been on Pomalidomide for 7 cycles. What comes next I don’t know. Possibly Bendomustine if I qualify for it.
I’m surprised your doctor predicted a length of time for Philip because one of things I have learned about Myeloma is that it’s unpredictable.
I’m still keeping the Prof waiting and I’m hoping not to see him again any time soon.

Every day is a gift.

Andy xx

[PhilipandfionaParticipant]

Thanks guys
Yesterday was a bad day. Today is a new day. The storms felt quite fitting!
Today’s gift is Monty python at the O2 with my mum. Xx

[duskParticipant]

Dear Fiona

I hope today is a better day for you.  I have to admit I thought the end was near with my responses to initial chemo with many hospital admissions in a short space of time.  The last – I was too worn out to care if I lived or died (but for my personal responsibilities to others).  But I came through- I think for now. In spite of many gaps in my chemo treatment, as a result, I was lucky that my insistence on what I sought for initial treatment (and got because of second opinion) proved to be the right thing for my disease to get under control with the treatment.

So going with your own instincts, ( and research with knowledge of your own situation/ health), rather than just taking the opinion of one doctor who will have their own way of seeing MM, is important.  All treatment is a risk in MM; none of us have a crystal ball to know the outcome beforehand, not even the doctor.

I hope that you and Philip can think about how you want to proceed and why and get the support to do this.

Best wishes

Dusk

[PhilipandfionaParticipant]

thank you Dusk. We are very pleased Doctor Boyd is knowledgable enough to know the lastest thinking, but humble enough to know he’s not got all the answers. I think between him and the Marsden, we feel very comfortable.

[PerkymiteParticipant]

Hi Annette 4.5 years on Revlimid and this is your first treatment! That is worth a WOW. Am I miss reading this, did you not have CTD or SCT before going onto Revlimid?

What dose of Revlimide are you taking and are you taking steroids with it?

Kind regards – vasbyte

David

[StuartParticipant]

Hi Fiona
sorry for the delay in replying…. but anyway….

it’s good to know Kevin is keeping up his knowledge base with MM. We saw him for probably over two years every time we went to the Marsden and got to know and like him. He was always the one that attended the worldwide conferences and networked within the MM community and so was always completely “up to speed” with all things MM. My own thoughts in regard to the points you raise are as follows.
I don’t think my wife would consider an allo at all … unless she were in the last chance saloon. It’s just too risky, and the only people we know (or met) who had one are now no longer with us.
I’m not sure if Kevin is talking about an “average” performance for revlimid to be effective, you perhaps should question him more closely on why he thinks one year is all. My wife has now been taking it for four and a half years and it still remains effective….. maybe she is lucky… I don’t know.
We have’nt been down the Pomalidamide route so have no experience, but again I would ask him; I’m sure he will be able to explain why.
On a more general level the reason we liked seeing Kevin is he would never sell you false hope. He would say it exactly as he thought it based on all the knowledge and experience he had, and on the first few occasions we found it a little disappointing….. probably because it was never exactly what you wanted to hear…. but over time we realised that he was giving realistic advice that we could expect to exceed…. if we were lucky.
I’m not sure I understand your words about Philip and two years. Is this two year survival? Or two years on the Rev/Pom Combo? The latter I expect; and if so then I would expect that’s Kevin’s “worst case” scenario.
Since the Prof has departed the Marsden I would guess they are still trying to find someone suitable to replace him. In the short term ( I think) Martin Kaiser is in charge, and if you get to see him then you can have every confidence in him. We see him regularly and couldn’t speak highly enough of him.
PM me if there is anything specific you would like to know.
Best of luck
Stuart

[avantrompParticipant]

Hallo David
I live in the Netherlands. When I was diagnosed in 2010 I had the option of standard treatment at the time i.e. thalidomide + chemo for 9 months and then continuing thalidomide, or else I could participate in a random trial comparing thalidomide and lenalidomide (Revlimid).I was fortunate and got lenalidomide. I was 66 at the time and considered too old for sct. With the benefit of hindsight I am pleased that I didn’t have a sct because my quality of life is very good. I have the usual side effects of lenalidommide, low red and white blood cells, but my everyday life is not affected. I reacted severely to my first dose of 10mg so it went down to 7.5mg. The fact that my dose is so low may be a reason why I tolerate it so well. The only other medicines I take are preventative – aspirine-based blood thinner because lenalidomide makes the blood more viscous, and stomach protection against the aspirine.
I know that lenalidomide is not normally prescribed here as I received it. I’ll continue taking it until it ceases to be effective. I still have pp in my blood of .6gr.per dl. ( hope i’m not way out with my units)
Sorry this is so wordy but you did ask.

[Author]

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