[tmcintyreParticipant]

As Finn says, Velcade is usually the first line of treatment. It is an injection into the tummy, initially twice a week and then once a week. Very quick and painless. Its early days for your mum, things will settle. Mu husband was 57 when diagnosed,

Teresa

[tmcintyreParticipant]

Hi,

My husband had Acute Kidney Injury when in hospital after his SCT. Six months later his kidney function is normal.

best wishes
Teresa

[tmcintyreParticipant]

Hi

You did the right thing getting mum to hospital as the sooner they are aware of any problems the sooner they can treat them.

Kidneys can be affected by Myeloma and the hospital will be testing mums blood at the end of each treatment cycle to check how they are functioning. She will be asked how she is feeling, whether she has nausea or tingling or pain. Tell mum she needn’t suffer in silence, her consultant will always want to know so that treatment can be adjusted to relieve symptoms. In our area we are lucky to have a couple of specialist nurses available to answer questions at any time and also an emergency number.

Myeloma UK have lots of helpful booklets for patients and carers which you can download or have sent to you. My husband has Myeloma and has never wanted to know the ins and outs of the disease, he just keeps his head down and gets on with the treatment. I have read them and on the odd occasion he has talked about things I have been able to refer back to them for info.

All the best
Teresa

[tmcintyreParticipant]

Hi Anne,

My husband still has to drive everywhere, even when he takes the dog down to the lake for her afternoon walk he pops her in the car, parks up and walks to a bench. His legs are still weak – our son calls them “chicken legs” – and we’re encouraging him to try exercising them. However, as he is putting all his energy into work he is too tired for any exercise. He’s never been a particularly energetic kind of person so its going to be hard to motivate him.

He was encouraged by his employers to apply for Ill Health Retirement and as he is now 59 he took their advice and has been approved. So although he didn’t really want to stop working for a few more years we decided that it was time to live life as fully as we can. He’ll finish work on 31st October so probably too late for us to get back into the camping we so enjoyed but I’ve challenged him to start building up his leg strength so that we can get back into it next year.

I think as you have always been active you will find it easier to get back to fitness although you might get tired more often than previously. You will probably benefit from physiotherapy (which my husband wasn’t interested in). Where there’s a will, there’s a way!

All the best for 5th September – my Birthday!

Teresa

[tmcintyreParticipant]

Hi Susie,

The Facebook group is very active although I came off it a couple of months ago as I was becoming emotionally involved with so many people’s journeys and found it too distressing when they passed away. Of course there are lots of lovely people managing very well too and the “real time” feel of it was very reassuring if you had questions. Now that my husband has had his SCT and been told to get back to normality I felt that I needed to stop letting Myeloma dominate our lives even though he is still on the 4 weekly cycle of maintenance treatment and check ups.

So, I visit this forum now and then, and also the Macmillan Myeloma forum,

Teresa

[tmcintyreParticipant]

Hi Anne,

I’m glad you are settled in your mind as to the way forward for you. It is hard to know what’s best but we are guided by the consultants. It took my husband 11 cycles to get to SCT so we were so glad to be moving on to the next stage. We are now 6 months post SCT and my husband feels that it was worth doing despite now being on maintenance which means our lives are still ruled by the 4 week cycle. His bloods and bodily functions are all within the normal range but he gets tired very easily and his legs still lack strength. We weren’t given timescales for remission and we don’t ask. All I know is that some people get 6 months and others go on for 10 years plus so it’s very unpredictable.

He has made returning to work his priority and all his energy goes into that which leaves nothing for leisure but perhaps it won’t always be this way.

The fact that his brother died within two years of being diagnosed with Myeloma has spurred him on to accept the treatment and live life as best he can.

Time goes so quickly and before you know, you will be out the other side, SCT done and on the road to recovery. Keep posting, it helps to write it down

Best wishes
Teresa

[tmcintyreParticipant]

Hi clarkie,

How are you? What have you decided to do?

Teresa

[tmcintyreParticipant]

Hi Jean,

What a tough year for you both. I can understand why your husband feels that he’s had enough. Perhaps a break in treatment will give him a chance to gain some strength back and hopefully those PP’s will stay at a low level.

Thinking of you both,

Teresa

[tmcintyreParticipant]

Hi Paul,

Thank you for your post. My husband has been told his blood sugar levels are rising but they didn’t say it could be connected to his steroids. Its possible its not so we’ve taken it as a sign to improve his diet and lose some weight. As he is on maintenance treatment the steroids might be stopped so it will be interesting to know if they are the cause of the rise or not,

Teresa

[tmcintyreParticipant]

Hi,
My husband is 5 months post transplant. He is back at work and gradually building up his hours but he is shattered when he gets home. His legs are still weak and he gets breathless easily. We’re hoping that losing the weight he put on during induction treatment will help but as he is on maintenance treatment including steroids its a slow process.

Medically, his blood and kidneys/liver are all normal so its just down to him now to build his strength up,

Teresa

[tmcintyreParticipant]

Hi Michael,

I haven’t heard that phrase before but it seems to fit my husband. After initial treatment blood tests showed as normal with no sign of lightchains or paraprotein. However, a bone marrow biopsy showed that his disease was still at the same level as it was at the beginning of treatment. This seems to be unusual though as his consultant was very surprised by the result and needed to change his treatment plan..

All the best,
Teresa

[tmcintyreParticipant]

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 to feel wiped out (the worst of this lasted 2 days). He lost interest in tv and reading during the second week but started to pick up in the third week.

He complained mostly about being hooked up to a drip the whole time and having his obs taken every 4 hours as he didn’t sleep well.  He was diagnose with flu a couple of days after having his cells back so he was having iv antibiotics and fluids alongside potassium and other things.

Teresa

[tmcintyreParticipant]

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 trial as far as we know but perhaps for compassionate reasons. After 3 cycles of this my husbands bmb showed lower results of plasma cells enabling him to go for SCT.

He is now back on lower doses of IRD as maintenance,

Teresa

[tmcintyreParticipant]

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 for longer.

My husband didn’t respond to treatment initially so it took 12 months to get him ready for SCT.  Early indications are that he is now clear of the disease. He started on maintenance drugs last week. So not the drug free future he’d hoped for.

There is a Myeloma UK Facebook group you might like to join. You’ll get lots of different viewpoints on there.

Teresa

[tmcintyreParticipant]

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.

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