[annsharpParticipant]

My husband has been fortunate enough to go on the combination of Ninlaro/Revlimid and dexamethasone under the Compassionate Use Programme, which are all administered orally. Apart from being quite complicated to remember all the different combinations on so many different days so far he has had only one main problem and his myeloma is responding well so we are told. The problem is persistent coughing which has become increasingly worse and is listed as a possible side effect for 10%. We have tried everything we can think of–chest X-ray, antibiotics and every cough mixture and tablet under the sun. It keeps him awake every night and makes it difficult to converse 0r watch T.V quite a lot of the time.

We just wonder if anyone else has had a similar experience and can offer any suggestions. Would be very grateful if you have.

[docmikeParticipant]

I am hoping to go on ixazomib so have no experience but as retired consultant physician( gastro not respiratory ) i do know that asthnma (test peak flow meter ) ?better on dexamethasone day ??? or gastroesophageal reflux (trial of proton pump ihibitors) are two causes of chronic cough relatively easy to exclude .
Mike

[tmcintyreParticipant]

I was interested to read about your husbands cough.  My husband has been coughing for nearly 6 months, since he started his treatment.  Apart from a Lower Respiratory Tract Infection a couple of weeks ago there has been no explanation for it.  He was referred to the Lung Consultant who has given him inhalers which so far have not had any effect.

 

[annsharpParticipant]

Thanks for replies. My husband still has the cough and has just been given a second dose of antibiotics so we will see (and hope) Treatment otherwise doing well.

[tmcintyreParticipant]

Hi Ann,

How is your husband getting on?  My husband is starting Revlimid, Ninlaro and dex next week, for 3 cycles.  My husband is still coughing – I hope it doesn’t get any worse on this combination!

Teresa

[annsharpParticipant]

Hello Teresa

Fortunately my husbands cough has mostly gone now, been better for about 2 months. So we are not really sure if it was caused by the treatment or not. The consultant agreed it was possibly a side effect but we know of other people with pertsistent coughs nothing to do with myeloma.

My husband will be starting his 7th session this week and overall it seems to be working well with no major side effects.

Good luck to your husband

Regards

Ann

[tmcintyreParticipant]

Hi Ann,

Thanks for your reply. I’m glad to learn that your husbands cough has eased and that he is getting good results from the treatment.

We saw a lung cancer consultant today who my husband went to last year for tests due to a persistant cough and who is taking a special interest in my husband although he has definitely ruled out lung cancer.  There is some damage to the lungs which appears to be due to infections and asthma but it has improved since using various inhalers.  So it looks like the problems were there before Myeloma was diagnosed but perhaps the chemo is aggravating?  He has given him an antibiotic prescription to run by the Myeloma consultant next week as he wants to provide him with protection from infections  while his immunity is compromised.

Best wishes

Teresa

[docmikeParticipant]

Hi Ann,
I applied for adding ixazomib to rev/dex and was successful under the Compassionate use programme offered by Takeda and was expecting to start tomorrow ;the drug having been in the pharmacy for over a week . I am now told NHS ENGLAND has stepped in with an edict saying they will not fund lenalidomide if I do so .So I assume this is a recent restriction which prevents me going on triple therapy for relapsed myeloma which I know ( not think )is the optimum treatment for this situation and which increasingly is the norm every where else except the uk (due to rationing by Nice and now NHS England .)
I am asking myeloma uk to make enquiries .
Mike

[annsharpParticipant]

Dear Michael,

Sorry to hear you have been told this. We haven’t heard about it. In fact we went to the hospital this morning and have just been given the medication for my husbands 7th session of the triple treatment so hope you may be able to get the decision reversed

All best wishes

Ann

[tmcintyreParticipant]

Hi Michael,

How long have you been taking Rev/Dex?   Have you had SCT and now relapsed?  My husband is still on initial treatment, his SCT has been delayed twice,

regards

Teresa

[docmikeParticipant]

Dear Teresa.
I had my sct in November 2015 relapsed in march this year (not good high risk ??)just finished my fifth course of Rd.and slowly responding -1 every month. I am very pleased your husband is on triple therapy IRd (and which therefore does not include cyclophosphamide or thalidomide )as initial therapy and outside a trial? But beware of NHS England who according to the response by myeloma uk to my situation would not approve such that someone be it pharmacist or commissioner has turned a blind eye to them to your benefit .
Dear Ann
Myeloma uk have replied to my query and are aware of the problem and they are trying to circumvent nhs englands restriction …an excellent response but many battles ahead . I will ask if i can put the response on this forum .
Mike

[tmcintyreParticipant]

Hi,

It seems so tough trying to get the treatment you need, good to have Myeloma UK on your side.

I don’t know how or why the consultant has gone down this route. He didn’t say it would be a trial, just that he was fortunate to obtain funding, perhaps because its only for 3 months or because my husband’s brother died from MM? My husband had 5 cycles of Velcade/Dex, having dropped Thalidomide because of the beginnings of Neuropathy. Then 2 cycles of Cyclophosphamide/Dex. His bloods are completely clear but his bone marrow is still showing plasma cells. Presuming he does have SCT, the consultant has said he will stay on Rev as maintenance.

Please let us know how you get on,

Teresa

[adriwest1Participant]

Hi Teresa, I to am being treated at Southampton, your husbands story and mine are similar. I have just completed three months of the drugs you are about to start. I assume you see Dr J

adrian

[tmcintyreParticipant]

Hi Adrian

Good to hear from you! Yes we see Dr J. How have the last three months been for you? When were you diagnosed and what’s the next step for you?

Teresa

[adriwest1Participant]

<p style=”text-align: left;”>I live on Isle of Wight- diagnosed June 2016, had 8 rounds of VTD then three rounds of  Ixa. Dex and Rev. Have a bone biopsy next Tuesday to see if the treatment has worked.</p>
<p style=”text-align: left;”>I found the side effects much easier on the last treatment but as you said back on the drugs and daily injections. I think we all hate them!</p>
<p style=”text-align: left;”>Dr J is one of the best in the country so you couldn’t be in better hands.</p>
<p style=”text-align: left;”>keep going</p>
<p style=”text-align: left;”>adrian</p>

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