Hi Eve,
Stephen is just starting his second cycle of velcade this week. He goes in on Tuesday and Friday for two weeks then the week off. He has a long list of times for these days for several weeks in advance giving him specific times for his treatment. Tomorrow his appointment is 4.30pm but if the drugs are ready early they will give him a call and he will go in. This means he can work from home. He is having his velcade sub cutaneously so spends very little time in the hospital, the biggest problem is waiting for the drugs to be ready. They have to be prepared differently for sub cut than for an infusion. The longest he has had to wait was two hours but I think they are getting used to the sub cut administration now and it is getting quicker. It's still quite a new thing at our hospital. He has a blood test on Friday for the next Tuesday.
Steve is treated between Pembury Hospital in Tunbridge Wells and Kings College hospital in London. KCH are ahead of the game on things like the sub cut velcade so Pembury were fine about doing it when we asked for it, even though our TW consultant said it was not yet licenced. He is having all the velcade treatment locally and will go to KCH again if and when we know how the treatment is progressing.
I hope this is helpful,
Love Mari xx
Dear Gill,
This is such wonderful news i am absolutely delighted for you both. Like your Doctor I really want to hug you both. I hope you can both enjoy some time together now,
Lots of love Mari xxx
Dear Lin,
I have travel insurance with First Direct as part of my bank account with them. My husband has MM and last year was just post SCT but on no other medication. I had to answer a few extra questions about his health but they had no qualms in allowing him cover on my policy. They were well informed questions and they understood the treatment pretty well. They were interested in what treatment he was having, when he was last in hospital and what for and if he had ever been told that he was suffering from a terminal illness. He was well and they were happy to cover him. I hope this helps,
Mari
Hello John,
It is a long time since you wrote this post and i was very glad of your advice. Steve is coming to the second week of his velcade and is doing well so far. I was just wondering about what you said about your wife's treatment. You say she has had Velcade for a year, I had thought that only a few cycles of velcade were given. Does she receive treatment privately, are you paying for this treatment? I hope you dont think me really rude in asking these questions. Velcade does seem to be very good at keeping Myeloma at bay, and although Stephen does respond well to these therapies, the myeloma returns very quickly. I was thinking it might be helpful to keep the velcade up to keep it from returning. No doubt I am getting ahead of myself but we must always have hope.
I hope you get this message, such a long time after our original posting. I do hope your wife is doing well and continues to do well,
Love Mari x
Hi there,
I am sorry you find yourself in this position that none of us would wish for. My husband also has MM and he went through an SCt although i do know what you mean, its a difficult decision. Steve became very depressed when he was having CDT even tho it was working very effectively. The shock of going from a fit healthy man with the world at his feet to a virtual cripple with MM to deal with. We both had counselling with a specialist cancer counsellor. We were referred by his consultant but mayb you could talk to a Macmillan nurse, they are hugely helpful. We found the counselling really got us through a difficult time. I hope it can help you ae well.
Good luck with the rest of the treatment,
Love Mari xx
Hi Tom,
Thanks for the good wishes, Steve is better and has had two lots of Velcade so far, plus the dex that goes with it. He is having sub cut injections rather than the old intravenous stuff cos its supposed to give fewer side effects and so far so good but probably a bit too early to comment as he has only had two injections so far. He is playing a gig with his band tonight, first time for ages and he is excited about that and now he has walked into town, stark staring bonkers as its below freezing here, brrrrr!
Being a kentish lad he favours beer but with the dex it does bloat him up something awful maybe i should get him on the vodka instead?
Hope you continue to keep well,
Love Mari x
Dear Dai and Janet,
So sorry to hear your news a great disappointment for you both I am certain. I wish you luck with the trial, you seem so positive and upbeat, I am sure it will go well for you.
Please send my love especially to Janet, I understand so well how she feels,
Mari x
Hi Glenn
I am sorry to hear that you have been diagnosed with MM and that you and Jacqui are facing sure changes to you life. My husband Stephen was diagnosed in January 2010 when the tumour on his spine caused compression that prevented him from walking, resulting in a operation, sadly all too common in myeloma sufferers. He was 53 and like you was fit and strong, swimming cycling sailing and holding down a demanding job. As you can imagine it turned our world upside down and I found myself caring for him in a way I never imagined possible. He too slept in another bed, or even a chair for some time. 2010 was a difficult year whilst he went through the treatment, but just before Christmas he was told he had achieved complete remission. As a result 2011 has been a wonderful year for us, he completed London to Brighton cycle ride (90K) in June, we had a wonderful sailing holiday in August, he drives and works full time again. In short our life has returned to nearly normal, well as normal as possible with myeloma in the background! However tough things are now, they will get better for you I am sure. Your fitness prior to diagnosis is in your favour and your positive attitude will carry you through. We both struggled with what had happened to us and had specialist oncology counselling by referral from his consultant which helped immensely. Hold on and things will get better for you both.
I wish you both well for the journey you are about to face, there will be some light at the end of the tunnel,
Much love, Mari xx
Dear Bridget,
You are such a wonderful woman. I have seen what these treatments do to people and I think you are doing so well to even comtemplate all that you are doing. You are always immensely supportive to everyone here and now its our turn to support you. I know exactly what you would say to someone else. Dont lose hope, there is always something else around the corner, where there is life there is hope. So dig in as only you can do, you have already come through so much. I know you have great faith in your Doctors and at UCH you have some of the best in the country. They will find something else. Recently i have heard of people receiving lower doses of melphalan after bendamustine, with a good success rate and even then going back to other treatments that have worked earlier in your treatment.
We are all thinking of you and hoping this treatment goes well for you,
Much love,
Mari xxx
One word Eve
HURRAY!!!!!
Enjoy the good times that are ahead of you, I hope Slim starts feeling better soon,
Much love
Mari xxx
Hi Ed,
I am a carer too and my husband Steve has MM. He was diagnosed in 2004 when he was 48 but the disease did not become active until 2010. His paraproteins rose very slowly over that time and we were able to put it to the back of our minds and live our lives during that time. When it started to make itself felt in early 2010 we were very shocked. We both went to see specialist oncology consellors that we were referred to by his consultant and we both found it hugely helpful. If you cant get a referral then I am sure you would find the macmillan nurse really helpful as jean suggests.
Good luck to you both,
Much love
Mari
Dear Eve and Bridget,
Thank you for your good wishes and really helpful comments. It never ceases to amaze me how differently people can react to both this horrible disease and the treatments for it. Steve was supposed to start velcade today but as he has another ear infection he is back on antibiotics and they would not give him the treatment, so we are waiting until next Tuesday now. His bone pain is getting worse especially in the ribs and sternum and I know he is worried about this. His MM seemed to take hold very quickly last time around with disastrous circumstances. His consultant is sending him for an MRI to check it out so hopefully that will check out any problems that are starting up. The MM is ceretainly affecting his immune system as this is the second ear infection in three weeks. I guess we just have to get him through this. It seems to me that MM can so often be a series of crises resulting in treatment and then a good spell for however long after. We just have to get through the bad time and make the best of and enjoy the good times. I am so glad that I have this forum to share my feelings with all you great people,
Much love,
Mari xxx
Dear Jo and Eve,
Thank you for your kind words and good wishes. I hope you both had a good Christmas. We had the children home and some good friends came over in the morning and we all cooked lunch together. It was a lovely day. Dex seems to affect Steve in a very strange way. He gets very lethargic and needs to nap frequently, he does not get the high but nor does he get the mood swings either. It also gives him terrible bloating and looks about 6 months pregnant! Does anyone else have similar problems?
Eve, did Slim have his velcade subcutaneously? I am not sure if this is a good idea or not. Dont want to risk and further neuropathy for Steve but want to be sure that it is as effective as IV velcade.
Mari
I wish you all a joyous Christmas and a peaceful and healthy New year, thank you one and all for the support we have received here,
Mari xx
Dear Sarah,
I am so pleased to hear that Henry is doing so well with CTD and I wish you both well when you embarak on the SCT in the New year. I hope it bring him a long healthy remission.
Best wishes for a lovely Christmas,
Mari xx
