[compass007Participant]

Hi alll Im back again… Good news is SCT went fantastic like I said a “BREEZE” unfortunatley it only lasted about 2 days. ha ha ha, I know I shouldnt laugh…. but its just my humour, after the and during SCT  I started getting some back pain I was due a Pet scan and bone marrow biopsy to check if SCT had worked… I got the all clear nothing in the bone Marrow or on the PET scan less than a week later I felt there was something wrong with my right eye “this is where the Myeloma originally presented itself a plasmacytoma” so  I go for another scan all done very quickly “im very thankfull to the DRs and Consultants I am under” and it shows the plasmacytoma presenting itself again and a lession in a rib and in the pelvis again which I originally had…..so now they have managed to get my on a non EU approved drug IXAZOMIB although approved in the US this is given alongside Lenalidomide and my favourite one DEX….the plan is to get to remision “if possible” then go for allegeniec transplant but we will see how things go, one day at a time im not expecting too much, I feel fine at the moment “I dont believe in depression or being down whats the point” I feel lucky being given the chance to try these new drugs…what I would like to ask is… has anyone had any experience with it or even heard of it?…as none of the nurses new what it was at Heartlands…anyway enough for now…and remember one day at a time and try to stay happy folks

[compass007Participant]

I should of said a drug thats not  approved by the EU, but with whats happening with the UK and EU should I really care?

[hcp1Participant]

Hi, I had my SCT in Jan but unfortunately it did not work for me. My myeloma is measured by lambda light chains. By June they were up to 1310. It was decided that I needed further treatment and so I was referred to Dr Ramasamy in Oxford by my Gloucester team. I started Lenalidomide and Dex immediately while the paperwork to access Ixazomib was processed. After one cycle of Lenalidomide and Dex my light chains dropped from 1310 to 153; a fantastic result. I am now on my second cycle of treatment and Ixazomib has now been included. As yet, I have had very few side effects other than feeling quite emotional and the usual fatigue. I hope all goes well for you. Helen

[peterlParticipant]

Hello 007,

Nope, I’ve never heard of it either, but I understand that the U.S don’t give out drug licences willy-nilly, so even without current EU approval, you may be onto a winner. It’s the same old MM story, that individual’s reactions to individual or mixtures of drugs appear to be very different. My consultant told me last week, it’s often a matter of trial and error, to get the right cocktail together. See below…

hello hcp1 (Helen?),

yes, mine is lambda LCs as well. Mine dropped from 11,000 down to single figures (well within reference range), over the first and second cycle of vtd. My last treatment was February 16, but now they’re on the increase again, rising, out of range, to 117 this month. My consultant says no further treatment yet. My experience with vtd has been fairly good regarding the LCs, but unfortunately the treatment has significantly affected the lining of my stomach, and I literally have to tie a loo roll over my shoulders if I’m going out. It’s manageable with codeine and Imodium, and is under active investigation with the hospital. It’s been ongoing for six months!

From speaking to various people (patients and doctors) it does appear that with some people, very good early response, <i>may </i>mean there is a reduced period until the little devil LCs, like mine, go on the March again, and this seems to be the case if you don’t have an sct, and for some that do have an sct. It’s just another example of the MM individuality problem. As I said above, my consultant has delayed any further treatment, until a definite trends established (increasing from 117), and then different cocktails will be tried. It’s also a possibility that if your body is under stress, from some other medical condition, that your LCs can literally “go up the wall”. I’ve been told this by my GP whose father has myeloma, and echoed by my consultant last week. So increases may not solely be due to your MM, but if they’re on the increase like mine, irrespective of the cause, it’s worth (I think) keeping an eye on your kidney function, as well as asking your consultant if there are any other adverse signs from your blood tests.

Very best wishes to all,

peter

[hcp1Participant]

Hi Peter, Sorry to hear about your stomach problems. I hope they manage to help you with this.

Let’s hope your LC take their time before reaching the point at which you need further treatment.

Like 007 I would be very interested to hear from anyone who has been/is being treated with Ixazomib, Lenalidomide and Dex.

Best wishes

Helen

[compass007Participant]

Well after only 6 days my plasmacytoma in the right eye is all but gone I know that is not really a medical measurement for success or failure but I would have to say it must be a fairly good sign not seeing my consultant for over a week so wont really know anything till then, Im going to see a radiotherapist tomorrow not sure if its for treatment or consultancy first, I have only taken 1 Ixazomib as its weekly then lenalidomide daily and Dexys Midnight Runners Weekly, still have pain in my shoulders and right rib but to be honest im coping ok with pain Killers….what does confuse me a little is that my consultant who is Dr Wandroo (fantastic by the way) told me from the start there is no cure…then my consultant at Heartlands Dr Kishore told my with allogeniec STC it is a curable cancer? not for me by the way I think im too far but I would like to know which consutant is correct any thoughts?

 

Still a Happy Chappy at the mo….

All The Best

 

Compass007  Les

[peterlParticipant]

Hello 007 (Les),

For some reason my ipad can’t post to myeloma.uk.  But if you’ve rec’d something like my current post, then I apologise.  I’m on a PC now.

If your question is whether MM is curable, then all the consultant experts I’ve spoken to say ‘No’.  Irrespective of what or how many SCTs one has.  Not at this time, with current medications.

However, my old GP had MM and prostate cancer.  That was 10 years ago and he’s still going strong.  A kidney specialist I spoke to in the Royal London Hospital, told me he had an elderly lady patient who developed MM in her mid seventies – no SCT – and she’s now 90, and as before, still going strong!

Unfortunately, there are patients who are less fortunate.  But who knows…?  With new drugs just around the corner (EU or not), I think there’s every reason to be optimistic.

Best wishes,

Peter

[annlynnParticipant]

we must stay optimistic only way im. Aware its not curable but treatable treatemts changing weekly. hang on in everybody. xx

[compass007Participant]

Just a quick update caught a cold a couple of weeks ago needless to say that turned into a fever and eventually i was hopitalized for 5 days found out it was my Hickman line that was contaminated so they took it out all fine now and im back at home, however I had to stop the new drug treatment Ixazomib for a week doesnt seem to have had any detrimental effect start the new cycle tomorrow Ixazomib Lenalidomide and Dex….touch wood it still seems to be working, I do hope the US aproved Ixazomib becomes available to all because at the momment i think its the best relapse drug about….im sure time will give me that answer…all the best and keep your chins up…

[susieParticipant]

Hi Les

I’m reading your posts with much interest. I’m relapsing at the moment and have been told I might well be on the regime you are, Ixazomib, lenilidimide, and dex. I’ve had Revlimid before so I know what to expect from that, but I’m interested in how the ixaxomib affects you. There is a big but and that is my consultant seems very cost conscious and ixazomib is extremely expensive he says.

I wish you the best

susie

[hcp1Participant]

Hi All

I have had one cycle of Lenalidomide and Dex followed by a second cycle of Len, Dex and Ixazomib. This was prescribed after failure of SCT earlier in the year. Unfortunately I have encountered a few problems over the last few weeks, probably nothing to do with the new drugs but more to do with bad luck!  I  had a UTI (July 22nd)  ten days into second cycle followed a week later by a cold and high temps. My high temps continued to spike regularly reaching 38 plus, despite a course of antibiotics. . We were due to leave for a much needed holiday in cornwall on the 10thAugust. Due to yet another high temp I visited our helpline clinic on the day before we were due to leave. It was decided that although 24/48 hours of IV antibiotics would normally be given I should go and enjoy a break with oral antibiotics and delay my third cycle of treatment as Ixazomib should not be given within 14 days of receiving anti biotics.  So we travelled to Cornwall on the Wednesday and by Thursday morning at9am I was admitted to the Royal Cornwall Hospital, Truro! After several days of a variety of broad spectrum antibiotics and a thorough range of tests, scans etc to identify source of infections none were found. In consultation with my home consultant it was decided I should try a course of Dex 10mg twice a day. My fevers stopped immediately and have been able to join my family for two days of holiday before we return home on Friday when I will arrange to see my consultant as we pass the hospital on the way home. Based on the 14day following antibiotics rule I can’t see me being able to start cycle 3 until end of August. I am then due to visit Dr Ramasamy in Oxford on Sept 9th to assess how things are going.

Susie, sorry for such a long story but haven’t had enough experience of Ixazomib to answer your question. I will though post again once I have managed to complete another one or two cycles of treatment.

Keeping positive and hope to look back on this experience as a blip!

Best wishes to you all

Helen

[susieParticipant]

Hello Helen

So to hear of your problems. I do hope you’re feeling a good bit better. Have they blamed the ixazomib ?
It will be such a shame if it is found to cause problems because it saves having to attend a hospital so often for Velcade.

I’m at Wycombe Gen so as far as I understand it comes under the Thames Valley Network from the Churchill. You’re in good hands there.

All the best Helen

susie

[hcp1Participant]

Hi Susie

No one has mentioned that it could have anything to do with Ixazomib. I really don’t think they could make that judgement after just one cycle of treatment involving it.

Will keep you in touch. Should know more in a few more weeks.

Helen

[compass007Participant]

Hi Helen and Suzie just to let you know my consultant told me that as Ixazomib is non EU aproved and that the drug Company is trying to get it aproved so it is cheap (which would make sense) Im not sure how good it is yet as I have had just the one cycle, as I said in my last comment I caught a cold then got a fever and had to stop the treatment for one week fortunatley I got ill during the week off the drug so have only missed one week, what I can say is that after SCT failure my Plasmacytoma behind my eye started to return and bearing in mind that when I was originally diagnosed some 12 months ago this tumour was very aggresive and they thought I would lose my sight in that eye…after a 1 month cycle of this drug combo the tuma had all but gone….so at the momment im very much pro Ixazomib and may (touch wood) get upto 21 months remission from it…However this illness is always a fire fight and what works for one person may not for another, so as usual I take it one day at a time and although im up beat I certainly dont get fazed by drugs failing ive already had SCT failure and DT-Pace failure and Velcade failure “that sounds like complete failure” ha ha… like I said im still quite up beat and take it one day at a time what will be will be…Good luck all

Regards

 

Les

[compass007Participant]

Hi Peter only coming back to you now as I wanted to speak with my consultant Dr Kishore and team at Heartlands regarding MM being Curable or not…upto 6 weeks ago it was my assumption that MM was not curable after looking at all the information available I would say that is a pretty fair assumption…However after talking to the team at heartlands that is way of the mark in there thoughts basically what they said is that with allogeniec Stem Cell Repalcement this is very possible although Very Very high risk, the way they put it to me is that I am 51 now if after allogeniec SCT you lived another 20 years or more would you say thats a cure, my answer was I would be thrilled to get another 2-3 years…there reply was well we have patients that are doing just that and beyond, so although still not sure there is a cure it has to be good news although high risk and to be qite honest about 60-70 % die in the first 3-5 years..

anyway thought that was quite interesting as it looks as though I will be going through Allogeniec SCT in the near future lifes one gamble but just wish the odds were a little more favourable lol…

hope your as well as can be

regards

 

[Author]

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