Suggest you talk to the Myeloma Nurses. I’ve spoken to them on several occasions and found them to be so helpful and understanding. Give them a call.
Hi Maureen ,
Good luck with Wednesday, you’ve just got to hang on in there. easier said than done I know.
Richard
perhaps someone put the decimal point in the wrong place
For me, the question wasn’t so much about how soon I could travel but about how quickly my T4 cells recovered post SCT. Apparently. I’m not sure how it works but the T4 cells I believe are the ones that fight a specific type of infection. Before they were happy for me to do anything I had to have a minimum of 200 T4 cells per whatever measurement of blood. So perhaps you need to ask what the relevence of the T cell count is to your husband’s particular case.
By the way, we did go to Paris for a few days during a break between Chemo courses. As far as I was concerned it wasn’t such a great risk because we live in Germany and it’s only 3 hours by train, we stayed with family and I felt well enough, had all the antibiotics and anti viral drugs with me. I also didn’t tell my consultant but I must stress that that decision is a personal one and only your husband can make it
Myeloma UK produces a superb book for smnall children that explains about MM and how it affects the body. It’s done as a narrative from a small girl who’s father has MM. Suggest you have a look on the website.
Hi Vicki,
I had Velcade with Cyclophosphomide last year but it only reduced my IgG down to 52 before they decided to stop. It didn’t really work for me and Revlimid was not seen as an option because after having just one course of PAD as the initial chemo, my Liver enzymes went through the roof. The medics were very concerned about Liver damage being caused by the Revlimid and felt the only option really open to them was SCT even with a high IgG level. I still have an IgG level of 23 and have done for the last year. Neither the Velcade nor the SCT acheived the holy grail of total remission but I’m managing fine.
As you say the condition is so individual but while they are still experimenting with new drugs and/or combinations there is still hope. We all know it will come back again someday but there’s nothing we can do about it so far. That doesn’t mean it will always be like that.
Richard
Hi there,
I had my SCT last January – 1 year ago tomorrow. Since then my PP’s have been stable at 23. Other indicators show that the MM hasn’t got any worse but they didn’t do a BMB post SCT because I didn’t want it and my Consultant agreed it wouldn’t really tell her anymore than she already knew. So, although no BMB, the course of action is to wait and see. I am drug free – apart from Zometa. I can do a lot of things I use to and I am presently applying for courses to help with a career change. I was a truck driver but the medics won’t let me do that anymore.
My advice to you is don’t get hung up so much on PP figures. There are other indicators and the consultant will look at everything before making a decision on treatment. Enjoy what you have for now and make the most of it.
Richard
Don’t need to thank us, after all you paid into the system long enough and what you paid in helped someone else at their time of need. We just need the youth of today to have more babies so that the cash supply keeps coming. I suppose it’s like a big Pyramid scheme, you need more at the bottom to keep it all going.
Hi there,
I’m afraid what your going through is normal for most families. The Dex causes sleeplessness as well as depression in some people. It really does affect behaviour and causes mood swings. I was very short tempered whilst on it and yet in the middle of the night so high I spent the early hours just writing away silly things or surfing the net.
The ‘life not worth living’ can also be linked to the Dex. As I said it can be a depressent. Again I felt really low after it and if you check other people’s posts, they felt the same. MM is so awful because you do feel so unwell, not just for a few days as with a cold but continuously with one thing or another. I don’t know how much bone damage he has but that is there continuously to begin with. I suspect with those with Spinal damage it is very bad. The breathlessness is pretty common. If the heamoglobin levels are low or if someone has a lung infection than naturally the blood won’t absorb as much oxygen as a healthy person.
As for how long it will last, no one can say. Do you have an idea if and when he is likely to have an SCT? Has your consultant given any indication of how the Chemo is going? You need to prepare a list of questions for the consultant as he/she is best placed to advise. The other thing of course is to contact the Myeloma Nurses. On every occasion I’ve called I have found them so helpful.
Christmas is such a shitty time for so many because we are expected to be happy and merry and unfortunately for those with MM it’s not always the case.
Richard
Hi Jeffrey.
I go swimming up to 3 times a week. I started during Reha (a German thing where anyone after major illness gets sent to a clinic for rehabilitation). The Physio checked me over and said swimming would be good. Because I have damage to my shoulders she suggested that I swim on my back and do small arm movements. I found after that the amount of pain killers I needed could be reduced to the point where I now don’t really need them. I still get some pain but it’s manageable. I swim about 10 lengths of the local pool in about half an hour. I also tend to cycle to and from the pool as its less than 2Km away.
I have to say that I am 11 months post SCT, my Lucizytes have recovered and my T4 cellcount is above 200 so infection for me is not seen as a major risk.
Hi Linda,
first of all, don’t panic. We all started the same way, in panic and fear about what MM is and what it means to your life. Next, step back and take a deep breath. You’ve already done the right thing by finding this website and posting. I assume that you have appointments with the consultanat lined up, write down questions, don’t worry if they seem silly, you will need the reassurancethe answers will give you.
The next best thing is to contact the MM nurses at MM UK because they will be able to offer support and advice.
But the main thing is don’t panic.
Hi Rebecca,
I haven’t a clue what generally causes shortness of breath but in my case MM was diagnosed whilst in hospital with a very severe case of Pneumonia. I still have damage to my left lung and so consequently I have reduced lung capacity. The other thing to note is that MM can also affect the Heamoglobin levels in the blood and it’s that that carries oxygen around the body.
As for me, I am virtually treatment free, I go once a month for Zometa and a blood test. I stopped with pain killers in July after having 3 weeks rehabilitation that included a lot of Physio and sport. I stopped with the anti viral drugs and anti-biotics last month after my T4 cells reached over 200 per whatever measurement of blood it is. I still get a pain in my shoulders when doing fiddly things but I go swimming upto 3 times a week at the moment and still use the bike which certainly helps. My wife said she had noted that those who try and stay active through exercise or sport tend to suffer less. Obviously we accept that for a number, they just cannot be as active as they may like.
By the way John, sorry for Hijacking your post.
Richard
Hi John,
23 for PP isn’t a bad figure and if it comes down even more all the better, I’ve been at 23 since my SCT last January and still doing ok so don’t worry too much over the figure. There are plenty of other indicators that the medics will look at. Like you I am short of breath after climbing stairs etc but strangely enough not after riding the bike. Unlike you I won’t be buying a big LCD TV, if I did I wouldn’t get a chance to watch it because our daughter would hog it with her DVD’s.
Enjoy
Really sorry to hear about your loss. For all of us sufferers it’s just a matter of time but to have been robbed of any decent life makes it worse. I hope that the pain will improve over time, my best wishes for the future.
Hi there,
Had SCT last January and before that was on VCD. The Velcade gave me neuropothy in my feet. It slowly got worse after the second course but fortunately not in my hands. The Cyclophosphomide didn’t affect me that much I believe but the Dex was the worst. It made me irritable, hyper, unable to sleep. I’m surprised I’m still married. The Velcade was given by injection of 2.6mg on a cycle of day 1, 4, 8 and 11. 20mg Dex on days 1,2,4,5,8,9,11,12. Cyclophosphomide (1800mg) on day 1. After each treatment cycle was a week off then it started again. The Velcade didn’t work that well in reducing my IGG but I had the SCT anyway. Although my IGG is stuck at around 23, it hasn’t got anyworse. Aprt from Zometa and the monthly blood test I am not having any treatment so overall I can’t complain. I hope it goes well for you.
