[tmcintyreParticipant]

Hello Ann,

I’m glad your husband is well, treatment does take some tweaking before you get the right balance. Seems as though the Ixazomib is the right one for  us.

Teresa

[tmcintyreParticipant]

Hi Mike,

Good to hear you’ve got through SCT but sorry to hear you have the ostonecrosis.  My husband is 11 weeks post transplant, having bone marrow biopsy next month. The plan is for him to continue with IRD as maintenance to prolong remission, hopefully dropping the dex after 3 months.  He had flu during SCT and another infection a couple of weeks after discharge but has recovered remarkably well although anaemia is still there. His lower back is sore and I’m wondering if bisphosphonate will help as others have mentioned it eases bone pain. His consultant gently hinted that his weight is a contribution as he put on over two stones during induction treatment which is not good as he was already overweight.

Wishing you well for a better future,

Teresa

[tmcintyreParticipant]

Hello,

Good to meet you albeit in these circumstances. I hope your dad does well on VTD. The one tip I can give you at this stage is for dad to report if something is worrying him eg if he feels sick on the treatment or has diarrhoea or tingling in his hands and feet or a rash.  There is usually something to help with this to make life better.  Also, it seems that most people are told that they will have 4-6 cycles followed by SCT.  Not everyone follows this path (my husband didn’t) and adjustments might have to be made along the way but there are lots of drugs available, some might give him side effects, some might not, he might be very tired.

It is a shock to everyone and takes time to sink in but once you get into the rhythm of treatment it becomes your life and you get on with it as best you can.  You might find that dad actually begins to feel better once he’s started on the VTD.

Let us know how he’s getting on.

[tmcintyreParticipant]

Things have moved on.  Dave had 3 cycles of Ninlaro and Revlimid, developed a rash so for the 4th cycle, while we waited for biopsy results, it was Ninlaro only.  Good results!  His bone marrow count when down from 50% to 10-15% so he is preparing for SCT.  He had an Apheresis line fitted because of difficult access to his veins, priming last week and harvesting this week. SCT planned for 2nd January although if a bed becomes available beforehand he will get the call to go in.

As previous drugs hadn’t worked we feel so so lucky that our consultant was able to access these drugs for Dave.

How is everyone else doing?

Teresa

 

[tmcintyreParticipant]

Hi Mike,

We are in Southampton.  Are you a member of the Myeloma Support Group on Facebook. There has been a discussion about this recently,

best wishes

Teresa

[tmcintyreParticipant]

Hi,

My husband was diagnosed in December last year. After 5 cycles of Velcade his blood results were very good and he had dates for his SCT. However, his consultant was very surprised to find his bone marrow biopsy was showing myeloma cells and he said Dave was a non secretor.  He then had two cycles of Cyclophophamide and now on fourth cycle of Ninlaro while we wait fo his latest bone marrow biopsy results. He’s been told that biopsys are the only way to confirm the levels of his disease. Can you tell what scan you had?

Teresa

[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.

[tmcintyreParticipant]

Hi Maureen,

Thanks for the update, I hope Carfilzomib gets to work for your husband.  We are waiting for results from my husbands bone marrow biopsy to see what the next step is – SCT or some kind of PACE treatment has just been mentioned.  My husbands bloods are completely clear, its just the bone marrow showing disease now.  He is on Ninlaro and Dex.  He did have Revlimid too but he came out in a drug rash near the end of the last cycle so Revlimid has been dropped this time.  I presume his consultant wants to continue with the Ninlaro as he had to apply for it as a trial drug and I think if you stop it you cant get back on it.

Best wishes

Teresa

[tmcintyreParticipant]

adew,

 

Have you managed to get a second opinion?

 

Teresa

[tmcintyreParticipant]

Thanks John.

[tmcintyreParticipant]

Can I ask you a question please John – do you have to inject a blood thinner every day?

 

thanks

Teresa

[tmcintyreParticipant]

Hi,

I can understand how low you must be feeling to be back into the routine of hospital and treatment.  We’ve been on this journey since December and I sometimes wonder if that’s our life forever – my husband hasn’t got to SCT yet so not experienced a break from it all.  Despite trying to get on with life its hard when he is always tired and gets breathless so easily.

I hope all goes well with you both,

Teresa

[tmcintyreParticipant]

I can recommend Southampton General Hospital.  Dr Jenner and his team are always ready to listen and address any concerns we have.  Any problems my husband has had with his treatment has been dealt with immediately to ensure that he hasn’t had to cope with side effects unnecessarily.  He is keen to access the best drugs for his patients.  The only gripe with have is the long waiting times in clinic – but I guess that is down to the fact that the team are prepared to give you the time you need to talk things through. Here is a quote from the hospitals website.

Dr Jenner has conducted clinical research into the optimal treatment strategies for myeloma and in to the prognostic significance of cytogenetic abnormalities in myeloma. He has also participated in the development of BCSH and NICE myeloma guidelines.

All the best

Teresa

 

 

[tmcintyreParticipant]

I can’t see that anything about cbd oil on here but if you can get onto the UK Myeloma Support Group on Facebook they have discussed it briefly.

[tmcintyreParticipant]

Thanks,

We’ll see how he gets on with his 3 cycles of ixazomib. His consultant didn’t say he was on a trial although as you say, that drug is on trial, he just said he’d secured funding for it.  We’ll know more as time goes on.

I hope your dad keeps well,

Teresa

 

• This reply was modified 7 years, 3 months ago by  tmcintyre.

[Author]

Posts