Hi Dan,
When I relapsed from my SCT I was also given Velcade. Although they don't say as much Velcade is a primer for a 2nd SCT… Unfortunately I and several others here didn't create enough Stem Cells to provide the opportunity for a 2nd SCT so the Velcade was given as a stand-alone treatment.
My relapse also showed a secondary tumour on the sternum, a difficult area to treat with radiotherapy due to major organs, in this case specifically the heart but my consultant said that if it was MM related (which she though it most likely was) then the Velcade should be able to quell it along with the rest of the disease. 😐
It did… the golf ball sized tumour disappeared with 4 weeks. I achieved total remission after 6 Cycles but unfortunately it didn't last long… but it only goes to show my premise of it being mainly a primer. 🙂
I hope they quickly get on top of your Dad's back/leg paralysis problem to allow the Velcade full and uninterrupted reign to work its magic. 😎
All the best to you, your sisters and especially your Dad.
(Tell your sisters to enjoy their time with your Dad and then go home with a sense of relief. I am sure that your Dad will be out to visit them by the end of the summer). 😉
Regards
Dai.
And then there were three…
Ethan James Crowther – born at 9:46am this morning to my son Ross and Daughter-in-Law Kelly. 😀
Ross kept me informed of progress throughout the night (I didn't mind being woken in the slightest… he was excited but nervous as well because Kelly had a hard time with Owen two years ago.:-0
So, good news all round8-)
Cheers everybody
Dai.
Hi Sal,
I remember your initial post and I wondered then if your Dad would be able to withstand the rigours of MM treatment given his history and the two heart attacks while on treatment,
I am sorry that your Dad had to suffer the bad luck of contracting this awful disease at his age and after fighting to stay ahead of his heart problems… but it is over now and I hope that you and your family can put aside the travails of the last few years and bring to the front the positive and happy memories of the better times with your Dad.
Regards
Dai.
Home is where the heart is… and the TV, sound system, bed, toilet… etc. etc. Familiar things that may seem trivial to some but are of vital importance when recovering from a major procedure like a SCT.:-|
Take it easy and take it slow,,, very slow. Rest up, don't try too much too soon and don;t feel guilty about chilling out and generally doing an impression of your favourite veg. 😎
It will be worth it in the long run.
Take it easy but take it. & welcome home.:-)
Dai.
My PN started with my frontline CDT… put down to the 'T' of Thalidomide. It was mainly in my feet with only the slightest sensation in my hands. The second wave came with Velcade, which exacerbated the PN in my feet and calves and started to show in my fingers and hands. I am now on Bendamustine… which includes weekly Dex and Daily Thalidomide.
The PN eased somewhat after my SCT but came back with a vengeance during Velcade and has stayed with me ever since. I have only been back on Thalidomide for 4 weeks and it is too early to say if there has been any further deterioration… although I do believe my fingers are a little worse.
I haven't had a lot of pain as such but I describe the sensation as akin to coming in from playing in the snow as a child, where your feet feel like they have got chilblains… and my feet are like that on a permanent basis. Its a numb feeling but comes alive if I try to move my feet and if I kick anything with my bare feet it is excruciating.
I suppose I am stuck with this condition now and my only hope is that my fingers don't get any worse. I love playing my guitar and singing and I have already had to abandon any subtlety in my playing due to the PN.
My 2p worth.:-)
Dai.
Hi Keith,
You have been here before and you keep on fighting back.
The transfusions are a necessary inconvenience but if they lift you away from having to postpone treatment it will be worth it. It's good to see your Neuts are staying stable, that's one big plus. The medics are doing all they can to get you fit enough to allow the CDT its best chance… and that could work wonders. If they can keep your levels balanced until the CDT takes over then all well and good. Eight Cycles of CDT will have the dual effect of keeping you going and, hopefully, get you to some sort of plateau. 😎
Who knows… Kyprolis (Carfilzomib) might get licensed over here some time this year and that could be a saving grace for many of us in the later stages of MM, It is the first new treatment since Revlimid in 2006 and it looks good. 🙂
All the best for this week… stay positive and stay as healthy as you possibly can. 😎
Keep in touch.
Dai.
Same here… whenever I am on treatment (which has always included Dex) my voice goes husky and breaks a lot, which doesn't help when I want to record vocals (singer/songwriter as a serious hobby).:-(
Dex is the only constant of these occurrences so I have laid the blame at its door (poor thing, it does get a bad press when all it is trying to do is help).:-D
Dai.
Hi Lisa,
Your husband will soon get used to judging his own temperature (i.e. he will feel it if his temperature starts rising) but it is sensible to take his temp a couple of times a day (mid-morning and mid-evening) especially if something like a chest infection is lingering.:-|
I check my temperature at least once a day as a ritual… more if I am feeling a little under the weather. I have been checking it twice/three times a day over the last week because I have felt hot and a little bit bothered but I was fine each time, it was just my body's reaction to having the central heating on for longer than usual because of the weather.:-)
You can download lots of information from the archives on the home page of this site… to ease your mind ring the number for Myeloma UK and speak to Ellen or one of her colleagues… if you are not sure exactly what you want or you don't feel confident about downloading they will help and will send you the relevant information by post.8-)
Please ask any question you want here too… it doesn't matter how silly or personal the question may seem, I assure you that most of us have been there, done that and used the T Shirt to mop up the mess.:-D
What is your husband's name? Where in the country are you?
Make yourself at home.8-)
Dai.
Hi Keith,
Well so far so good, even if it is very early days. Your Nuets are holding.perhaps building and the rise in your HGB is good news too. 🙂
I do hope that the CDT helps to get you back on track and as long as your bloods hold out you could go several cycles, perhaps reaching remission or a healthy plateau. I know that being on any treatment is not much fun but if they can iron out the side-effects of CDT you might get something approaching a fair quality of life while on it. 😎
Keep in touch and all the best 🙂
Dai.
[quote]It's strange to think that when Patrick was having Bendamustine treatment 2 years ago it was not very well thought of. In fact I remember suggesting it to one of our gang and she said that her Doctor had told her that it was a waste of time. [/quote]
Hi Tina,
That was also my original impression based on information and opinion of a couple of years ago but Patrick did quite well on it if I recall correctly… about 12 months? 🙂
My consultant says that a decision will be made about the continuation of Bendamustine after 3 Cycles (if nothing untoward has happened before then) with the option to have up to 8 Cycles in all. After that, assuming remission or a plateau has been reached, it will be a matter of waiting on the relapse before trying something else (Pomalyst or back to CTD etc.). 😎
I am hoping to last on the currently available treatments until Kyprolis (Carfilzomib) gets licensed here (it was licensed in the USA last July. Kyprolis, along with Dex and possibly Revlimid sounds like a really good treatment… my consultant was quite bullish about it… but when it gets here who knows? 😐
Dai.
Hi Maureen,
I am sorry that Ian is not responding to his treatment as quickly as you and the medics might wish. His anxiety seems to be holding him back and I know from experience, as do many on this board, that hospital is hardly the place to raise his spirits… home is the only place to give him a real chance of that, Being positive, biting hard (Vasbyte) as our David (Perkymite) says and doing whatever it takes to get home is Ian's best chance of moving forward.:-)
I hope he stays with the CDT, is is an excellent treatment as his light chains show… moving onto Velcade at this stage would be a waste of an excellent chance to bring the light chains right down, even to zero, zilch, nought.:-D
He is obviously feeling institutionalised by his hospitalisation but I do hope he manages to see it through, get home and pick up the positivity he needs in his own home, surrounded by the people and familiar things about him. I can't emphasise how important that positivity is to his long term future.8-)
All the very best and please stay in touch.:-)
Dai.
Hi Terry,
Our paths and treatments have followed very closely, Velcade was also magic for me (not the process, old school cannula not the new subcut unfortunately) but the MM came back within weeks of finishing treatment despite reaching total remission. 🙁
I have one rest week left before starting C2… getting a little better and stronger day by day and fatigue and weariness are the only discernible side-effeccts. 🙂
I too take Clexane (150ml each day) having had 2 DVT's, one in each leg, in 2011 and 2012. The snow is keeping me housebound and I find that a few gentle walks around the house (bungalow) is all I can manage. I feel great sitting down but it doesn't take much exercise to knock me off my feet.:-)
Yes, let's keep in touch… unfortunately Keith who was one Cycle ahead has had to move on to another treatment (CDT) but Scott is a couple of Cycles ahead and weighs in now and again so watch out for his posts too. 😎
Good luck with your RT treatment… and with your other cancers, you have dertainly drawn the short straw with them my friend. 😐
Regards
Dai.
Hi Tina & Etta,
I hope you both enjoy a long and trouble free remission. It is so good to see/hear good news on the board… keep in touch now and again to let us know how you are getting on. 🙂
Regards and best wishes
Dai.
Hi Maureen,
I did very well on Velcade, reaching complete remission after 6 Cycles. I had to have a cannula for each infusion but it is much better these days with a quick and painless injection into the stomach… as with Jo.:-)
I relapsed quickly after reading full remission and I would have done better to have carried on to the full 8 Cycles… just to stamp it in but the medics were happy to stop at 6 and what was I to know?:-(
The best of luck to Ian with his treatment… I hope it works well and quickly for him… but remember to ask for the full amount of available Cycles if is does… it will be worth it.8-)
Dai.
Hi Gill,
Sue;s last reply was on the 4th January… 8 days ago. 😐
I hope she is coping… I am sure she would let us know if there were any developments. Perhaps the DN's have arranged a few days hospice respite and she has managed to get away for a few days – wishful thinking but that would be good. 🙂
Much love 🙂
Dai.
