[bandityogaParticipant]

Hi Eve and Rebecca

Ian’s kidney function is improving slightly each day but still far from normal. He has never had an issue with is kidneys even whe his FLC where 4000 on diagnosis. I think they said it was 550 and normal is 200. No FLC results but think it is the myeloma attacking the kidneys. Consultant advised that as Ian has had several treatments and not much success with any other than SCT is there another treatment available which won’t attack his kidneys and does he want quality of life without any treatment. It is so tough for me as I fought for his first SCT which gave him 18 months remission or are we resigned to having several months on palliative care. Carflizomib has been passed by SMC recently but consultant said he didn’t meet the criteria as he has had more than 3 treatments but I will phone and ask the nurse on Myeloma Uk to confirm this.

Ian is such a kind and caring husband and doesn’t deserve this. I pray that there will be a treatment that will work for him.

Go for the dialysis and good luck for the futre.

Maureen

[bandityogaParticipant]

Hi Eve

ian’s kidney eGFR is 6 and as he has had several treatments the consultant thinks this is end stage. I am praying that today his kidneys improve and I will talk to the specialist at The Beatson to see if his SCT, using radiotherapy can go ahead.

Hoping you continue to improve and get your SCT.

Maureen

[bandityogaParticipant]

Hi Mavis

Good to hear from you and hope your PP levels stay stable and don’t cause you any problems. There aren’t many of us left on this site since diagnosis and I do prefer this site to the support group on facebook.

Things don’t look too good for Ian at the moment as his kidneys are not functioning very well. His bloods, kidneys etc were all good last week to go ahead with his second SCT. He has had high dose cycclophosphomide in preparation for harvesting and his kidneys are now very poor and we were told to expect the worst. They aren’t sure if it is the myeloma progressing and can’t tell us until Friday but in the meantime I am going to phone the myeloma nurse and also the myeloma specialist at The Beatson in Glasgow. They have reduced the dose of gscf and said the SCT won’t go ahead now but he is having radiation instead of mephalan which won’t affect his kidneys. Feeking very anxious but still trying to stay positive and keep praying.

Love Maureen x

[bandityogaParticipant]

Hi John

There is a myeloma group on facebook. It is a closed group so you have to ask to be added.

Maureen

[bandityogaParticipant]

Hi Helen

My husband had his SCT in The Beatson and they were excellent. He was home14 days after he got his stem cells back. He didn’t have too many issues mainly diarrhea and boredom. He took in his laptop to keep him occupied. We live in Dunblane so I was able to visit every day. I stayed 2 night at the hospital when Ian was at his worst, but there is a hotel nearby called The Pond as it is quite a journey from Dumfries. My husband had 18 months remission and we had holidays in Ibiza, Copenhagen, Bermuda, Vienna and Gran Canaria. He felt so much fitter and didn’t take too long to recover from his SCT.and we are now going down the route of TBI suggested by Dr. Soutar at The Beatson who is a specialist in myeloma and a lovely man.

I hope all goes well and your husband gets a long remission.

Maureen

[bandityogaParticipant]

Hi Andy,
It was good to meet up with you both again and hope to see you in Scotland next time. Ian is having cyclophosphamide on 28 August and then seeing if he can harvest stem cells on September 7. I do hope that he will be able to produce enough.

Our usual cheery consultant said it would be Ian’s last treatment and he may get 18 months and TBI has a high risk of causing secondary leukemia. Came home depressed. We went to see the specialist last Wednesday and he didn’t know of any risks and he didn’t want to build up our hopes but he has had a lot of success with TBI. He also said that this wouldn’t be Ian’s last treatment as he is still fit with no organ failure. Is it costs? Feeling so much happier and going to ask how we go about changing Ian’s care to the specialist.

Hope you are keeping well and looking forward to your next trip to Greece.

Helen,

Hope all is well with you and you are enjoying this great weather we are having.

Maureen x

[bandityogaParticipant]

So happy to hear your husband is home from hospital. I hope he gets into remission with his treatment and doesn’t have too many side effects.

It’s a hard journey but doable.

Maureen x

[bandityogaParticipant]

Hi Shirl

unfortunately my husband has relapsed again and finding it difficult to find a treatment that works as each time he relapses the myeloma gets more aggressive. It is such an individual decease but he still has a few treatments left. Not happy with our consultant so asking to be referred to the specialist in Glasgow again.

I hope your husband will improve soon and take care of yourself too x

[bandityogaParticipant]

Hi Helen

I too think Ian should try all treatments until either his bloods are bad or he has bone fractures. I feel so stressed when we see this consultant and would prefer to see another one, as there are 4 in the practice but no specialists. I will have to speak to the specialist nurse to see what she can do to avoid this consultant.

Ian is going to ask to stay on farydak even if his FLC are rising as they are only 113 at present, and hopefully he can produce stem cells.

He hasn’t had a trial as there aren’t many in Scotland and the consultant doesn’t want us to go down south but that may be our next step. Pomalidomide didn’t work for Ian but they only added dex without the cyclo.

So sorry to hear daratumumbab has stopped working and they doctors find another treatment that works for you. It is a worrying time but trying to take one day at a time and planning a 2 day trip for next week if the weather improves.
Love Maureen

[bandityogaParticipant]

So sorry to hear your husband is having such a bad time and it is so scary for you both. Early diagnosis is crucial but sadly many gp’s don’t know about myeloma as it is a rare cancer. My husband was diagnosed late in October 2012 after 7 months of back pain. He also had spinal compression but went on to have a SCT in May 2015 and was in remission for 18 months.

Speak to your husband’s specialist nurse to find out what treatment your husband will have. You can also phone the nurses on the myeloma site if you have any questions. I have always found them comforting and knowledgeable.

What age is your husband?

Thinking of you at this difficult time.

Maureen

[bandityogaParticipant]

Hi Helen

Thanks for the info but the trials in Scotland for daratumumbab are closed. We saw the consultant yesterday (the one we don’t like)and he was very negative, he has given Ian 2 weeks off treatment to see how he feels but if his FLC have increased again he will be taken off treatment. Only option open now are xomabib and mephalan given intravenously. We asked about giving stem cells and he didn’t think it would be possible but we asked to try so waiting for the results in 2 weeks time and very anxious. If his FLC have risen I will be asking to see the specialist at The Beatson in Glasgow again.

I also asked about going down south for trials and he said it would be possible but because we can doesn’t mean we should. He said trials were like picking something out of a bag and seeing if it works but we would be willing to do it. Ian doesn’t want to give up yet.

Hope your treatment is keeping your FLC stable and not causing too many side effects.

Maureen x

[bandityogaParticipant]

Hi Helen

Hope you enjoyed your holiday in Cornwall. We went a few years ago to Hayle and we loved it.

Ian’s latest results show the FLC have risen by 20 to 113. I know it’s not a lot but wonder if the treatment has stopped working. He has just finished cycle 5 and we are off to Ibiza for 10 days on Sunday so we won’t know the results for another 3 weeks. Trying to stay positive.

I hope you are still doing well on daratumumbab, it’s getting more difficult to treat.

Maureen x

[bandityogaParticipant]

Unfortunately the new drugs are not available here yet. As he has had a good remission with his SCT he would be eligible to have another. Has your husband had revlimid or velcade? Farydak is also available. Hope this helps.

[bandityogaParticipant]

Hi
My husband who was 56 on diagnosis also lost the use of his legs after spinal compression. He had a spinal operation to repair the vertebrae in his back (which I think were C1 and C2). The surgeon inserted posts and 2 pins which had to be removed later due to infection. I would ask for a back specialist to have a look at your brother.

My husband also developed a bed sore which kept him in a community hospital for months. He was also told he would not walk again but he had botox injected into his legs and physiotherapy and can walk with the aid of a stick.

Do not give up and learn all you can about myeloma and press for physio, treatments etc. My husband was diagnosed in October 2012 and although the first year was awful but we have leaned to live with it.

Maureen

[bandityogaParticipant]

Hi Sabs

My husband had spinal compression when he was diagnosed in 2012 and had an operation to insert pins to stabilise his spine. It did work but he had to have the pins removed as they caused infection. He has had several treatments and a SCT in May 2015 which gave him 18 months remission. Now on farydak, dex and velcade which is working. He does take gabapentin as he has slight pain in his backend his mobility is good.

Everything is scarey at first but try to stay positive and learn all you can about your husband’s myeloma. Phone the nurses on this site if you have any questions, they are very good.

[Author]

Posts