Hi,

Yes. my husband has his SCT in January.  The staff kept him informed of procedures and how he would feel every step of the way. For example, they told him when he might develop a sore throat for which they supply mouth washes as a prevention but can help if you do suffer. Any nausea is kept at bay and they warned him when he would begin…[Read more]

HI Susie,

My husband is being treated in Southampton.  Although VTD got the levels of PP’s & Light chains down to undetectable in his blood, his Myeloma was still showing in his bone marrow.  He then had two cycles of Cyclophosphamide whilst his consultant planned the next stage. He applied for (and got) Ixazomib, Revlimid and Dex, not on a t…[Read more]

My understanding is that although pp will plateau it will rise again. Once induction treatment has brought the levels down the aim of SCT is to keep them down for a longer period of time.  Having chatted to others through various forums it seems that patients are now being offered drugs after SCT as maintenance, to keep the levels down, hopefully…[Read more]

Can I suggest that next time your sister is at the hospital she asks to look at the machine that will collect her cells. I’m sure the staff will be happy to explain the procedure. There is a break between harvesting and transplant so she has time to recover from each procedure.

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

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 w…[Read more]

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.  A…[Read more]

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 wee…[Read more]

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

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…[Read more]

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 a…[Read more]

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 an…[Read more]

adew,

Have you managed to get a second opinion?

Teresa

Thanks John.

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

thanks

Teresa

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 g…[Read more]

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 onl…[Read more]

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. Here is…[Read more]

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.

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