mandyphillips41 replied to the topic Collapsed vertebrae in the forum Related conditions 10 years, 7 months ago
Hi. I had a collapsed vertebrae T7 and I ended up having a Kyphoplasty operation. The minute I came round from the operation it was instant relief. It was definitely the best thing to do as 3 weeks later I had a stem cell transplant, without the operation I don’t think I could have done the SCT. It’s worth considering – good luck
bandityoga replied to the topic Date for SCT in the forum Treatment 10 years, 7 months ago
Izzie
My husband will have to make the decision to go for SCT if he reaches remission. It must be very frightening but if it was me I would always wonder what if.
Hope all goes well and you will get a long remission .
Maureen
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Jean
Hope the results of the MRI are good and you get away ok. Are you going somewhere nice?
Maureen x
bandityoga replied to the topic Any experience of DTPACE? in the forum Treatment 10 years, 7 months ago
Sarah
Good luck with the new treatment, you certainly deserve it.
Maureen x
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Jean
Hope you got good news today. I dread meetings with consultant too.
Maureen x
bandityoga replied to the topic velcade working in the forum General 10 years, 7 months ago
Dick
Ian had Neuropathy with CTD on previous cycles . He has noticed a slight change in his legs but nothing to be concerned about yet!
Have your FLC reduced?
Maureen
bandityoga started the topic velcade working in the forum General 10 years, 7 months ago
All going well on velcade. Ian’s FLC have halved from 898 to 490 after first cycle. Great news.
Just returned from a 2 day break package at Rockliffe Hall in Hurwarth. Wonderful hotel with fully accessible shower, toilet etc. Spring break package excellent value.
Maureen
bandityoga replied to the topic Plasmacytoma in the forum General 10 years, 7 months ago
Staying at Rockliffe Hall, got a very good deal. Plan to visit Durham and Harogate
Maureen
bandityoga replied to the topic Plasmacytoma in the forum General 10 years, 7 months ago
Hi Helen
Enjoy your retirement. I was wary of retiring but now I don’t know how I fitted work in. An hour extra in bed, and taking it easy. Out for coffees, massage and breaks away. I also do pilates and sing in Rock Choir.
Ian finished first cycle of 6. Results on 28 th. Fingers crossed it’s working. Off for a few days tomorrow to Darlington…[Read more]
Kazzam2 replied to the topic Living with myeloma book: your hints and tips in the forum General 10 years, 7 months ago
Hi Richard, thanks for your reply. Another couple of tips in your reply about attitude and there being no point in feeling guilty. Your are right, but easier said than done sometimes eh?
Also rereading your earlier post, I must also make a point of remaining anonymous.
Regards
Karen
Kazzam2 replied to the topic Living with myeloma book: your hints and tips in the forum General 10 years, 7 months ago
Hi LoisLobann and all. I have not been on for a while so I have only just noticed this. I totally identify with Alpenator’s words about realising this is it, never going to get the old me back. And of feeling guilty, I too feel very very guilty I have inflicted this on my husband, and daughters, they do not deserve it. I am also on a lot of…[Read more]
bandityoga replied to the topic Start new Regime on Monday 20/01/2014 in the forum Treatment 10 years, 7 months ago
Hope you both enjoyed your break in Chester. We have been there and liked it very much.
Hope you didn’t wake all the guests with your partying.
Maureen x
bandityoga replied to the topic Goodnews in the forum General 10 years, 7 months ago
Jean
Ask your occupational therapist. We were also assigned a social worker who organised the grant from the council. Hope you are successful .
Maureen x
bandityoga replied to the topic Goodnews in the forum General 10 years, 7 months ago
Good news Jean
My husband Ian had to stop treatment early last year, to allow a bed sore to heal. His light chains were at 52 and he got 1 year remission.
Hope Michael recovers soon.
Did you get a grant for a wet room?
Maureen x
bandityoga replied to the topic Goodnews in the forum General 10 years, 7 months ago
You will both be relieved.
Take it easy and look after yourself. Hope M glets stronger and will ve on his feet soon.
Maureen x
mandyphillips41 replied to the topic My Remission is over!! in the forum General 10 years, 7 months ago
Hi Everyone and thank you so much for replying… Things are certainly sent to try us!!
I have already posted in another forum the following:
My consultant paid me his daily visit on Thursday last week and advised me that I would need to have a hard think about which way I would like to go for the future… He could offer me a double stem cell tra…[Read more]
bandityoga replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 7 months ago
Sarah
Ian got social worker when he was discharged from local community hospital. She arranged carers (which we no longer require, a wet room, for which we received a grant. Not means tested and the reach team for physio. Ask your MacMillan nurse.
Hope M is doing well on the steroids.
Maureen x
mandyphillips41 started the topic Decisions – To have a transplant or not!! in the forum Treatment 10 years, 7 months ago
Hi All
Just had a long conversation with my consultant. My myeloma is very aggressive and even after cycles of chemotherapy it is always there waiting to pounce. We discussed my options today (he is always very honest & straight with me) basically I can have a double transplant – I have my own stem cells, then course of strong chemo, then a…[Read more]
bandityoga replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 7 months ago
Sarah
Ian did not have vertebroplasty either for his spinal compression. He has 4 operations to date. First to put in 2 pins to support the spine, 2nd to clean out wound as he had sepsis, 3rd to take out 1 pin, 4th to take out last pin as he had an infection .
If you have a social worker, I would push for physio at home. The reach team should…[Read more]
bandityoga replied to the topic Steroids: effectiveness and side-effects in the forum Treatment 10 years, 8 months ago
Hi Sarah
My husband is on the same regime. Had 2nd velcade injection yesterday and on day 2 of steroids. A bit more emotional and talkative but otherwise well. Don’t know if this is reducing his light chains yet.
Can I ask if M is getting physio to help with his mobility? Ian had physio when he basin the local community hospital and then the…[Read more]