[BenParticipant]

I am being treated between Gloucester and Cheltenham, been through initial CDT, SCT in Jan 2014 and drug free since then with pp’s pretty stable at 15’ish but slowly starting to rise. As i head towards a likely 1st relapse I am planning to get a second opinion at the Royal Marsden (largely because my local oncology unit lacks a myeloma specialist). This has got me thinking about a couple of things and i’d be interested to hear from others with more experience.
1. Do you always deal with the same consultant or like me, see anyone of a number of oncologists in a team? The latter is starting to feel a bit flakey to me in terms of continuity and individual care. Hence the second opinion in London.
2. Those of you who like me are being treated at a general oncology unit rather than a ‘myeloma biased’ unit due to geographical location – how have you done in terms of getting access to treatment and funding for treatment beyond the current NHS ‘standard’ treatment protocols.
3. Anyone being treated in Oxford which is technically the closest centre of excellence to me, how do you rate it?
Thanks,
Ben

[jeff605Participant]

Interesting subject and one I have wondered about. At Leicester I see one of 5 consultants, and occasionally a registrar, these vary, this so far hasn’t been a problem. The consultants are all pretty good – although I do have favourites – and seem to have a good knowledge of my case and my problems. I believe they have a case conference the day before the clinic. I keep meaning to ask what the set up is, i.e. is there a myeloma specialist among them. My treatment sofar has been good, 3 sets of chemo drugs tried. referral for back problems quickly organised, questions answered, letters forwarded. What the classification of Leicester is I don’t know, and haven’t as yet worked out how to find out ! Regarding accessability to treatment, I was offered an S.C.T.. which I declined, C.D.T., Velcade, and am now on Dex – which is why I’m writing this at 3 oclock in the morning !! – and Revlimid, which I am pleased to say is working well.
I have read several good reports on Marsden, and the treatment given there. hope this helps and the relapse is a long way off. What a b—–r this disease is !! Jeff

[avrilro55Participant]

I have seen the same Myeloma consultant and Myeloma Speciality Nurse (who i am sure has hidden wings) at Addenbrooks since first diagnosis in January 2014, with the exception of my last visit as my Consultant has taken 6 months sabbatical to do some research. He due back at year end. As i don’t have to go back until end of October I expect i will see a different consultant until mine returns after Christmas. My consultant told me at thee very beginning not to go to my own Doctor with any small problem that may occur but to ring them and he/they will treat me as a GP as most GPs re not sure how to treat a Myeloma patient. Its worked well with me. During the winter caught the dreadful winter cough which lasted ages. They prescribed strong antibiotics plus chest xray and  scan. I cannot praise them highly enough. Good to be at a hospital where they have Myeloma specialists, even though its 190 miles round trip for me would not change.

[BenParticipant]

Thanks for sharing your experiences Jeff and Avril, it sounds like every hospital is different, I had thought the NHS would have some sort of protocol as to how many consultants a patient could see in rotation. Avril, I am really glad to hear you’ve got that personal contact, hang onto it! Can I ask why you declined the SCT Jeff? I ask because a myeloma friend of mine is considering the same at the moment. How was the velcade? That looks like my next stop as i’ve had a PP count rise over the last 3 blood tests, only small amounts but its the trend that seems to count.
Stay well both of you,
Ben

[jeff605Participant]

Hi, Ben.When I was diagnosed the S.C.T.cut off point was just past my age although I was told I could still have one ( this age has since changed I believe). I had researched the procedure, realised how arduous and lenghty it would be, talked it over with the consultant and family,and decided it wasn’t for me. History has proved it to be probably the right decision, having since lost my wife suddenly due to unsuspected lung cancer, and a daughter having a cancer followed by a brain bleed some 18 months ago which she is still very poorly with. Fortunately the chemo seems to be working well now I am on Revlimid, having brought me into partial remission. Velcade – I was on this for 6 months, initially it slowly brought my p/ps down but then plateaued. Side effects were hair loss – I came off it before this was serious – and periphial neuropathy in my feet and hands, which I still have, slowly decreasing, once more to a nuisance level rather than serious.Hope this helps, good luck with the velcade, Jeff

[cygnetParticipant]

Hi Ben

The Helpline nurses can supply you with a list of leading myeloma specialists/units if you want one.

I am monitored at a small haematology team at a unit in Kent & I am intrigued by the variety of approaches everyone on here describes. I think the protocols are determined by local policy & funding – my unit for example does not routinely test for or monitor light chains. My consultant also said they don’t routinely define people as “smouldering” either – you have to ask otherwise you are defined as MGUS or active myeloma.

I have already discussed seeking a second opinion with a myeloma specialist with my gp but I have decided not to do that until I need treatment.

You may want to post separately to ask people about their experiences of Oxford.  There’s nothing to stop you visiting the unit to have a look around for yourself.  Good luck!

C x

[bandityogaParticipant]

Hi Ben

My husband sees 4 different consultants at our clinic in Larbert, Scotland. We have found this beneficial as one consultant said he would not get a SCT as he was refactory but another put him forward for SCT which he had on 14 May and found it wasn’t too bad and was home in 16 days. We are still waiting for the results of SCT but he feels better so fingers crossed.

Our nearest myeloma specialist is in Glasgow which is 35 miles away but we would be willing to travel if things do not go to plan as he gets the standard NHS treatment at the moment unless he goes for a trial, the consultants do not mix treatments.

Ask questions and seek a don’t be afraid to ask for a second opinion, after all it is your life.

Maureen x

[BenParticipant]

Since my original post, I have a consultation scheduled at the Marsden in early August for a 2nd opinion and to get an idea of how treatment might differ there. I have also been told that I could in theory split my treatment between two hospitals, for example, join a clinical trial at the Marsden (which might not be available to me locally) whilst having my basic treatment (monthly zometa infusion) at my local hospital. I’ll post the findings on here for anyone who might be interested. It seems to me that unless you happen to live near a centre of excellence, then you need to travel to access the widest range if clinical trials. That said, I am still part of Myeloma XI and at every turn I have been randomised to either the standard NHS treatment or no further treatment. So clearly trials aren’t quite the shining path to chemical nirvana that i’d have liked!

Maureen, i’m glad your husband got his SCT and I hope he has a good response, mine has given me almost 18 months of drug free stability (though never reached complete remission) which has been fantastic.

Cheers,
Ben

[cygnetParticipant]

Good luck with your August appointment at the Marsden Ben – it will be interesting to see what they offer you.

It does seem sadly to be a bit of a treatment/postcode lottery out there which is why this forum is so useful & why we need to support Myeloma UK to help them keep campaigning on our behalf. We owe it to ourselves to keep asking questions too (in my opinion). Life isn’t a dress rehearsal as the saying goes…..

Cx

 

[bandityogaParticipant]

Hi Ben

I would be interested to know if you are offered different treatments at The Marsden.

Ian is doing well and FLC now at 16 which is the lowest they have ever been.

Maureen x

[BenParticipant]

Hi Maureen,

Great to hear that Ian is doing well, i’ll post a report on the Marsden experience when I get back. The paperwork for the consultation arrived today and explains that treatment is planned by a team of healthcare professionals – surgeon (suspect that’s less critical with our brand of cancer other than spinal repair), medical oncologist, radiotherapist, radiologist plus a key worker (specialist nurse who acts as point of contact). It also states the team meets regularly to discuss your individual case based on test results. OK that is probably what we are all meant to get where ever we are in the UK – but to me that sounds a lot more personal than my current experience. I’ll keep you posted.

Not sure if you are already aware but there is a webinar being delivered this week on Thursday by the head of myeloma research at the Marsden. Could be interesting.

Cheers,
Ben

[andygParticipant]

Hi Ben.

I was diagnosed October 2011 and have seen the same consultant since then. I’m on my second specialist Myeloma nurse though the original one, who got promoted, is still active with the Myeloma patients too.

I haven’t got to SCT so I’ve been pill popping all the time so over the last 3 3/4 years I’ve seen my consultant a lot! I’ve also seen a professor at another hospital for second opinions at the request of my consultant and I know she communicates with him about my treatment.

Every day is a gift.

Andy

[BenParticipant]

Hi Andy,

That sounds pretty much ideal in terms of having a trusted consultant monitor your treatment. Can I ask, no SCT because they don’t feel your PP count has dropped enough? Does that mean you have been on constant treatment since you were diagnosed without a break?

Cheers,
Ben

[andygParticipant]

Hi Ben.

My myeloma didn’t respond enough to the normal first line treatments CDT and PAD (velcade) I was quoted the minimum requirement was a 50% fall in PP count for a SCT. I was then tried on DTpace which was another failure. Next in line was Revilimid and Dex and an appointment with the Professor who ruled out an auto SCT and suggested an allo SCT unfortunately only one match could be found and it wasn’t good enough for it to be safe to go ahead. Cyclophosphamide was added to my Rev & Dex as it wasn’t having any effect. Fortunately that did the trick and got my PPs down to around 11 where they stayed for awhile. I had a total of 22 cycles of Rev before it was deemed to be failing. I’m currently on Pomalidomide and Dex cycle 21 and my PPs are below 10 but again a SCT has been ruled out due the hammering my bone marrow has taken and the difficulty it would have producing the required stem cells. So the answer to your question is yes I’ve been on constant treatment with no break since October 2011.

Every day is a gift.

Andy

[hcp1Participant]

Hi Ben

I am being treated at Gloucester Royal. I was diagnosed in April and have been under Dr Shields who I believe is the Myeloma specialist for glos/chelt. I see him every four weeks in clinic and I have a named specialist nurse who I can call at any time. She also runs a Myeloma support group at the Maggies centre in Cheltenham once a month. I can’t fault the treatment I have received so far. All the nurses and doctors who work at the Edward Jenner unit, where I have my chemo, greet me by name and always remember where I am in my treatment and take time to talk through any problems. I live closer to Cheltenham but chose to stay with GRH as that was where I was diagnosed after a week on the renal ward.

I am on Velcade, Thalidomide and Dex. I had very few problems for the first three months but am increasingly tired at the moment. I have a four week cycle. Two sessions of velcade each week for two weeks followed by two weeks off. I take one Thalidomide a day during the velcade weeks and then two a day during the two weeks off. Dex just on the day of velcade and the following day. I have responded well with my light chains coming down from 3,550 to just over 400 so far and my kidney function returning to almost normal. The current plan is one more cycle and then due to have my SCT in Cheltenham Oct/nov. This will all be confirmed when I see the consultant this Thursday.

I will be interested to read how it all goes for you at the Marsden this week.

Best wishes

Helen

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