You have nothing to lose, If it works you won’t regret it, if it doesn’t you should still get some remission but then will probably have to have it at a later date. Trouble is they won’t allow you to have a SCT after a certain age or if you are not physically fit enough. The few weeks in hospital are a pain but will be a memory afterwards.
I have to admit that it didn’t really work for me because I ended up being classed as stable only with a IgG of 24 at best. However, I have just had 15 months drug free.
That’s alright Maureen, The medics tell me that there are not too many side effects and shouldn’t be anything that won’t show up without a blood test. However I’ve found them to be over optimistic here, as if they spend a large chunk of their training on how to reassure the patient. As an example, at my initial diagnosis, my GP said to me that ” there is more chance of finding a specific tree in that forest than you having anything majorly wrong”, the town we live in is on the edge of a forest covering over 1700km sq.
My wife says I was unbearable last time I was on Dex and we are both really dreading it, I’ve just in the last few minutes taken the 40mg for this week. Last time I was 20mg a day, 4 out of 5 days I believe. At least this is a lower dose overall and only once a week. The sleepless nights I can use to study and revise, I have a couple of exams end of June, both in German and my German is still pretty bad so I need the time for revision.
Perhaps you and my wife should exchange email addresses, then you can exchange notes and give each other moral support over living with a monster in the house.
One of the things that the medics want to discuss is an allo SCT. My view is that the initial SCT didn’t really do very much and I think that was because my IgG was still at 36 when they did it. An allo might make sense but I still have enough of my own stemcells in storage for a second SCT and that for me, an allo would be an action of last resort. There doesn’t seem to be any difinitive proof that an SCT, auto or allo actually is the miracle cure. Really it seems to be down to how hard the MM is hit before the SCT and just how good the Stemcell harvest was at filtering out the little MM tumurs.
Now with Ian’s dental work, if he is ready for an SCT but they are delaying it until everything has healed up would they not put him on any form of short term maintenance to prevent the FLC increasing? Surely that would be logical otherwise, all the previous treatment to get him to this stage would be wasted.
Richard
Hi Carol’
Glad to hear you’re still doing well, have you taking up surfing with your new appreciation of life post SCT or just enjoying some sun?
I need to read up a bit more about Revlimid but apart from a risk of Thrombosis, it seems to be a good option. With Velcade I only had Neuropothy in my feet and just before the SCT it was really bad, over Christmas it dissipated. Strange thing is that now when I get stressed out e.g. Wifey’s giving me a really hard time, I get really bad pain in my feet. It never happened before. As for my wife giving me a hard time, I have to admit it’s deserved. (She reads the forum as well) 🙂
Anyway, I was on 20mg of Dexy with the Velcade before but I think this time they want to hit it hard before it really takes hold. My Consultant says he will consider dropping down to 20mg after a couple of weeks. I am realy looking forward to doing my German Homework at 3AM and then revising for the exam at 04:30 AM. Woe betide my Lecturers if they give me grief!
Richard
Oops! meant to say I had dexy with Velcade. I’ve not even started on the stuff and it’s already causing confusion and anxiety.
Hi Jane,
I had dexy last time with Revlimid, that was 20g for 2 days, a day off then 2 more days. My consultant is talking about 40mg just once a week but I have alrteady tried to have it reduced to 20mg, he says he may do after a few weeks. My wife is really dreading it and has warned me not to bite our daughter’s head off.
I live in Germany so I don’t know if they use prednisolone here, At least there isn’t any Cyclphosphomide yet so I wont have hours with a drip attached.
Hi there,
Unfortunately, people not being in contact seems to be the norm. Sometimes, they don’t know what to say, sometimes they feel awkward and sometimes they just can’t be bothered. What does come out of it though is that you do get to know who your real friends are and post SCT, when you start to live again, you’ll know who is worthy of your time and company. After all, both are really precious.
Not me either but anything in moderation surely should be acceptable so long as it doesn’t affect the drugs, trouble is it’s what each individual sees as moderation.
Hi Tony,
The best thing we found was to research what you can. Don’t just rely on a few web sites because they can be very scary. Think about what you want to ask the consultant when you see him/her. Write down questions so you don’t forget anything. Speak to the nurses at Myeloma UK, they’ve really helped me in the past. Take note that there a lot of under 50’s out there with this illness (I was 49 at diagnosys) and that a very large number do make it through the treatment. I don’t have specific figures but someone will.
Once you get over the shock and the treatment starts, don’t be surprised if you start to feel a little blase such as thinking of going for chemo as if you were just going to the shops. Your lives will never be the same again but you all still have a life and it’s a case of making the most of it while you can.
Above all, others have been before you and others will follow, use this forum to ask any questions even if you think they are dumb, chances are someone’s been through the same thing already.
Everyone here will be watching out for you so please let us know how you’re getting on.
Richard
Just to add to what Andy has said, my PP level since SCT January last year stabilised at 24, I have not had any treatment since. They have only just started to go up but my Kappa light chains are well within limits, heamoglobin, lucozydes and platelets are all well within normal range. On this basis I will go back next momth for another blood test only.
My doctor did say that IgG proteins will increase in line with the lucozydes if someone has an infection that the IgG targets. e.g. cold or flu type illnesses.
I am sure your consultanty will carry out blood tests over a period of time to give a true reflection of what is going on.
Just a thought, for many of us, post diagnosis, our lives change so much. We don’t work as much if at all, we don’t carry out everyday mental tasks that we use to because we are physically unwell and we tend to do as we are told by the medical experts rather than question them. After all, in normal life if someone told us to do something that was unpleasent, risky and totally outside our comfort zone, we would question it. What is worse for us is that MM robs us of our energy, we are all so tired. So, I wonder wether it’s more of a case that we don’t mentally exercise as much as we would have done subconsciously.
On top of all that, the SCT is major surgery, it puts such a strain on the body and the mind too. I also think of SCT as being the equivalent to wiping a hard drive clean and then rebooting it again. I find my taste buds have changed, my character has pehaps had a subtle change and that I too struggle to remember things. However I have started various courses that are really testing me mentally and more to the point give me a goal to achieve. To be honest, although not of a particularly high level, I do find them difficult and information retention semms low. So perhaps Angela, hubby ought to do Soduko, or crosswords or just play memory or even start a course. It can only help.
Richard
I remember when my father died in 2001 that I wasn’t there, neither were my two sisters. My mother was there and my brother, we know that he died painfully – he’d had a stroke and finally died from pneumonia. I don’t regret not being there. It was not easy for my mother and if I were there I would have walked away. This to me is normal as we as people naturally move away from stressful or frightening situations. Sometimes, carers are sent away because those dying don’t want to be seen in such a state.
Guilt is an emotion that really doesn’t have any logic, it can’t help bring your mother back, it won’t help you or your sister look after yourselves or your families. My own opinion is that you should remember the good times but life needs to concentrate on the future. Having MM, I know that the chances of me reaching pension age are pretty slim – I’m 51 but when I do go, I don’t want my wife or daughter to dwell on of feel guilty about what has happened but to move on.
Jeff.
I was on Velcade 18 months ago prior to my SCT and didn’t have any rashes. Since then, over the last month or so I have been getting pain and a rash on my feet and also very dry skin on my Scalp. I discussed both with my consultant who has ruled out any link with MM or it being a dormant side effect of the Velcade. However, having discussed it with my GP, we are both of the opinion that it is stress related. I understand life isn’t particularly easy for you at the moment so could it be stress with you as well?
Richard
Really saddened to hear about Scott, as Jane said, his posts seemed upbeat and optimistic. I hope you can manage with the grief and that you will make the most of everything he gave you. After all, you have a life to.
All the best for the future.
Richard
Hi there,
I’ve just had a bout of itchy red marks like small blisters on my feet. They are an indication of Shingles in my case. As for Neuropathy on my feet, I did have that whilst on Velcade but that has all but gone now. As for the schingles, I was given anti viral tablets whilst under treatment and my consultant said if I ever get cold sores or shingles then just start taking the tablets again.
Hi Maureen,
I had my SCT when my IgG was still at 36 I believe. I had 6 courses of Velcade that only managed to drop the PP from 52 down to 36. Because I am in Germany the rule that seems to exist in the NHS that you can’t have an SCT unless your PP is below 10, doesn’t happen here. After a chat with my consultant, she believed that the Velcade would not reduce the PP’s any further and that an SCT was the only option. You have to remember that I had 1 course of PAD that caused very high enzyme levels in my Liver and that Revlimid was ruled out because of the side effects to the Liver. On that basis, I didn’t have many options.
The SCT only managed to reduce my IgG to 23 and that for the last year it has remained at that level. I am however drug free and have quarterly blood checks, so far so good. I also accept that the Holy Grail of full remission is unlikely to happen but I am doing OK and that’s good enough.
