[tmcintyreParticipant]

Hi Adrian,

I think Dr J is very keen to make sure his patients get the best chance at remission so although his treatment plans seems to be longer than other hospitals I have faith that the outcome will last longer.

Let us know when you get your bone marrow results. Dave gets the second part of the results on Tuesday

Teresa

[tmcintyreParticipant]

Hi Adrian and Ann

My husband is starting the new combination of drugs today. In your experience is there a best time of day to take the Ninlaro? I know the Dex is best in the morning and Revlimid at night

Teresa

[adriwest1Participant]

• Hi Teresa, I was taking it first thing in the morning, as soon as I woke up. Then waited min of one hour before eating anything, there were a few times I felt sick but geneally I found the drug was less toxic than the previous ones I had been on. Had my biopsy yesterday and fully recommend gas and air, had three so far and this was by far the best if you can use this analogy! How did you get on?
• Regards Adrian,

[tmcintyreParticipant]

Hi Adrian

We still don’t have the results of the bone marrow biopsy, doctor explained it had to be sent away and a dye needed to be added etc. We go back in two weeks to talk about how Dave is getting on with the new meds. I think Dave has gas and air, I’m glad that it made it better for you. He said he’s not prepared to have any more biopsys (he’s had three) but I’m sure he will when the time comes.

Thanks for the tip about not eating straight away, I’m sure that will help. The last thing we want is Dave getting any sickness now as he hasn’t suffered with any of that yet and I can tell he’s a bit down about the delay in SCT.

Are you having a break in treatment now? Keep me up to date,

Teresa

[annsharpParticipant]

Dear Teresa

Sorry for the delay in replying but we have been at the hospital quite a lot of the day (Not haemotology but cardiology, another one of my husband ailments) He,(also Dave) takes the Ninlaro as soon as he wakes up, as there are strict instructions about not eating immediately. The first time he took it he was violently sick a couple of hours later so now he takes one of the anti-sickness tablets the night before, another one with the Ninlaro and usually another one later. This has worked very successfully and he hasn’t been sick again. Generally he hasn’t found the treatment too onerous, though there are good days and bad days.

Good luck to your Dave with his treatment

Regards

Ann

[tmcintyreParticipant]

Dear Ann,

Thank you very much for your advice.  Dave was up very late this morning so I was able to give him the Linlaro after reading Adrian’s message, before he got out of bed. By the time he got up and showered he didn’t have to wait long before he could eat and take the Dex. He hasn’t been sick to day but if he is we will do the same as your Dave. i’m sure he’ll settle into the routine quickly, he has done before.

How many more cycles will your Dave have?

regards

Teresa

[annsharpParticipant]

Dear Teresa

Dave is now on his 7th cycle and has one more to go as far as we know. The consultant says it is going well but I think it could progress further so we will just have to wait and see

All the best

Ann

 

[docmikeParticipant]

Dear All,
Myeloma uk are aware of the problem of nhs england restricting the FREE access to ixazomib to add to the Rd regime (Named patient programme)by threatening to withdraw funding for the latter regime (alternative go private and pay for it yourself?).Fortunately this potential block has been ignored or got round in some areas as your posts confirm but not in others and according to myeloma uk the problem is not widespread .
The reasons given are that 1)the addition of ixazomib prolongs response to Revlimid (yes that is a good thing clinically !)incurring higher costs for treatment that has not been approved .
This is the first time that longer term financial consequences are used to block a drug . The norm is to ignore the long term savings incurred by more effective regimes ( as proved by widespread publications and uptake everywhere but the uk ….5 years behind??) which prolong symptom free survival and in doing so prevent the costs of side effects ( thalidomide )and early relapse which is always more expensive ( This is an example of preventive medicine which is a very desirable target in medicine but is which as a principal is steadfastly ignored by NIce which obsessed with up front costs alone ).
The other two reasons are related to pharmacists and admin which are nonsense smoke screens to obsecure their real objections ,FINANCIAL.
I am aware the state of the finances in the nhs and the enormous cost of drugs treating myeloma but when a drug company offers free treatment to enable a definitive superior regime you a have to question the competence , the ethics and morality of NHS england when it goes out of its way to prevent patients receiving better treatment ;if a doctor was involved in this decision he has betrayed his professional and ethical responsibilities .
Now off to clinic to see what my latest results are and see if there is anyone locally to reverse decision .
Mike

[tmcintyreParticipant]

Dear Ann, I hope your husband continues to do well.

Hi Mike – its shocking that free availability of this drug is not universal.  Its a shame that you have to battle to get access to it.  Let us know how you get on,

best wishes

Teresa

[adriwest1Participant]

Hi all, what’s shocking is that you can/do feel helpless in what drugs we can access. From what I understand NICE are priced focused even at the expence of the patient, the only blessing is that we seem to get the best drugs further down the line. From my prospective I want the best treatment and some of the new drugs offer real hope but the time it takes and the approach by NICE means that trails going forward will probably be the way forward for me. I would be very interested as a patient from anybody about how we can apply any pressure and to who? Really what to do something. I know Myeloma do an excellent job but I personally want to do more.

Adrian

 

 

 

[Anonymous]

Hello,

I stated Ixazomib, lenalidomide and dexamethazone on a named patient programme in October as I have high risk myeloma and Amyloidosis. Mind you, consultants themselves had different opinions on if I should have qualified, one saying it was doubtful and another that I definitely met the criteria. I have a feeling the result is partly down to a consultant’s persuasion skills. Anyhow, 2 days after starting the treatment, my fingernails began crumbling, which to be honest didn’t really bother me. I mentioned it to the Registrar I saw at my last hospital appointment, and he asked if I moisturised them (!).  I replied no differently than before. 🙂

What might be concerning me though is that at the end of the 1st 4 weekly cycle, all of my teeth have become extremely sensitive. Even opening my mouth outdoors in these mild autumn temperatures causes pain. This came on suddenly and I can’t help thinking it is due to the treatment. Have switched to Sensodyne toothpaste and stated to use biotene mouthwash left over from a previous treatment. It is still in date 🙂

I just wondered if any others had such an experience on these treatments.

Kind Regards

JanT

[annsharpParticipant]

All We can say is that my husband has now had 8 sessions of this combination and has never had any side effects like yours.We go back next week for the results of a bone marrow biopsy (which has had other side effects but not related,I think) and will hear if he is to go onto a maintenance treatment. So fingers crossed for good results

Ann and Dave Sharp

[Anonymous]

Hi Ann,

We are all so different aren’t we. Thankfully I’ve had no illness so good overall. Good luck with the bmb results. I’ve had about 8 of these as quite a few were part of the clinical trial. I definitely recommend sedation. The first without sedation was okay; the 2nd without sedation and same doctor doing it, was definitely not. I was so upset afterwards that it’s sedation everytime now. Have been disappointed though as results from the hospital labs haven’t always been very comprehensive, and on one occasion I suspect they never turned up. Last one I had was to find out if there had been any mutations in my genetic type following relapse from sct, but the lab report said couldn’t no FISH testing as tbere weren’t enough myeloma cells. That was the very reason I had the bmb.

Interesting from Mike above re funding issues. I live in Northern Ireland where our non-functioning Assembly has directly affected myeloma care. On Daratumumab being offered at a rock bottom price, the response to the drug company was, “the minister would need to approve this, and as the assembly isn’t sitting, this can’t happen”. So we like many others are being used as political pawns to get the assembly up and running. If only we had limitless time as they appear to have! I learned of the situation from my Consultant. I contacted many of the politicians involved, the BBC locally and Myeloma UK CEO, but haven’t had any response. Maybe they are working to resolve behind the scenes. Who knows!

Best to all,

JanT

[tmcintyreParticipant]

We are once again waiting for results of Dave’s latest bone marrow biopsy. The aspirate is showing 6%, it was 8% three months ago so something seems to be finally working. He’s on his 4th cycle of Ixazomib while we wait.  He stopped the Lenalidomide because of an upper body/face rash at the end of the 3rd cycle.  Dr Jenner is now mentioning another treatment which involves a 3 week stay in hospital on intensive intravenous chemo. We didn’t ask what this is but it sounds like PACE.  My husband would rather not have to go through this, his is still aiming for SCT.

Another trip to the lung consultant who is very happy with blood test results and has requested another CT scan.  Previous CT scan showed unresolved pneumonia which I presume explains the coughing which has now stopped.

Dave is feeling good at the moment, no side effects, no sickness. He still gets breathless and has weak legs which I think might be because of Dexamethasone – nothing to say it is apart from other people with the same experience.

[docmikeParticipant]

Dear Ann, ,Teresa
I would be grateful if you could let me know the location of your hospitals ( Adrian in southampton ?jan t in northern ireland ) where you have received triple therapy ird under the cup scheme.I need to quote this intially to my consultants .
Dear Ann I am also interested in the possibility of your husband been given maintenance therapy outside a trial ?and therefore not licensed by Nice (will Nice ever fund maintenance therapy ???).
Indeed any one else looking at this thread who is on any of the above
I am about to try to pay for 3 months lenalidomide (£15,000?) in order to get three months of ixazomib before my second asct after which there is no option for maintenance.
Mike
Michael G Ashton , MB Chb ,FRCP

[Author]

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