Hi Mavis,
Great news that your PPs have taken the hint. Lets hope they stay that way for a long time.
I had a couple of months off after CDT and I didn't have any real problems and the effects slowly wore off and I began to feel more normal. A bit down on energy though, that didn't return fully until after my STC.
Best wishes,
Andy
Hi Penny,
Good luck with your STC. I hope it all goes well and you are spared infections and pop out at the other end very quickly on an upward slope to a long remission.
If the good wishes of lots of folk have any meaning, then success is assured.
Andy
Hi Vickie and Colin,
Following your thread reminds me of many of the ups and downs and the uncertainties of the journey from being ill, to diagnosis and then on to primary treatment and from there to the STC route.
Going from being desperately ill (in hindsight) then feeling better(ish) and able to function to some extent despite the effects of the meds and then on to STC.
My consultant and haematology team were very supportive and told me what I needed to know, I think, and on that basis I went along with their advice.
However, I went from someone, who like the majority I suspect,went from being content to know that blood is a red fluid that carries oxygen around the body and does a few other clever things to the realisation that our blood is phenomenally complex and an organ in it's own right and completely beyond any meaningful understanding of its workings by most of us.
I try, I really do, to read and understand what its all about but when I think I understand something, the other bits I thought I understood just slide away beyond my recall.
Nothing is done to us without our informed consent but in reality we have to go along with the recommendations of our professionals.
What will be will be.
STC can be terrible and is for some, also its not too bad for others.
I decided to just take things as they came and deal with them as best I could with no expectations. Like making a parachute jump, you have to trust that parachutes work and do it. Not be brave but stoical, just get on with it and I tried ignore the present as much as I could and think about the future knowing the World would be a better place when it was all over, and it was even better than I had hoped.
I think what I'm trying to say is this. If Colin has decided to go for a STC his best course of action might be to think positively and go along for the ride, trust his professionals and accept that the odds are in his favour to come out at the other end of in a much better state than when he started.
Be happy, don't worry.
Andy
Please be very careful,people, before getting involved with TV researchers. I spent most of my working life as a film editor and made films and programs over a very wide range of topics. Be aware that although some projects are a serious attempt to convey some meaning and insight into human existence, i.e. serious documentaries,
many end up as little more than voyeurism. The well meaning but inexperienced researchers are often swept along by the excitement of their project and display an astonishing naivety.
For example, I was once asked to edit a program in which stillborn babies were kept at home in the fridge and brought out to bond with. Honestly. They actually intended to film it and interview the bereaved parents as they did so. It may have made some sense at at a tragic and personal level for the parents of the babies to do this, I'm not qualified to judge,but to film it for public consumption? It disgusted me and I made such a fuss the whole thing was abandoned.
We are all going to die, obviously, some of us sooner than others and I think that we MM's accept that. When my time comes, I want to be bloody sure its not on some rubbish Channel 4 exploitative equivalent of "Big Brother".
We are only small and unimportant but we deserve a little dignity, surely?
Hi Vicky and Colin,
I had my STC last Autumn and with the harvesting and all the other mucking about involved, it is a lot of effort for everyone involved. I spent a total of 7 days as an in-patient (N&N try to get you home as much as they can). Yes, it is quite hard and uncomfortable, they are after all filling you up with some pretty strong stuff, but you will come through it, the neutrophils will come back and you will feel better. And Better. And Better. I only realised after how ill I'd been for so long when I was able to do things I'd not even thought about doing for ages.
My STC journey ran into the buffers after 4 months, but that's just me and this mysterious,individual disease.
Based on my experience, would I recommend other to go for it? Yes without doubt. Most people get a good remission far longer than mine and feeling 35 again without drugs and all that it entails is priceless.
I hope that it all goes well for you. Stay positive. Think about the good times to come and the the sore mouth and bum will soon be put in their place.
Best wishes,
Andy
Hi Keith,
I'm sorry you have relapsed, though it's good to know that there are more and more effective therapies being developed to give us hope. When I was on CDT everything had an odd taste which I was told was due to the Dex. I'll be able to find out soon as Dex will be part of my new regime too. Best of luck with your Revlimid/Dex trial.
Andy
Hello Mavis,
I have to get it done at hospital because although the injection is very small and quick it is done through a cannula and needs to be accompanied with a saline flush. Tuesdays and Fridays at hospital is a bore but its only 20 minutes down the road so compared with some poor souls, I've got it very easy really. Also the day clinic is a very cheerful and friendly place so again, I'm quite positive. I just want to get on with it now.
Thank you all.
Andy
Thank you for your kind thoughts Helen and Eva. My consultant thinks that if STC fails as early as mine has, the next one is very likely going to fail quickly too. Given the amount of time and discomfort involved with stem cell treatment, I will see what the Velcade can do for a while. The first cycle starts two days after we were due to go on holiday to France so I think we may be having a stay-cation this summer. Watching the drought lashing against the windows will cheer us up no end.
Keep plodding on!
Andy
Hi Terry,
There seem to be any number of plumbing systems used to harvest us. I had an aphoresis line that went into my neck. It worked very well and all samples, transfusions and everything went through the two tubes. In my case I could do anything I wanted within the extent of the length of the tubes connecting me to the machine. I could have used a laptop or an exercise bike if I'd wanted to. I was never bored however because there was so much going on and the staff are so friendly that the time flew by. I had four sessions of four hours and got enough cells for one transplant but about 400k short of the second.
I'm about five months down the road after STC and I'm feeling better than I have for a very long time. I hope your harvest goes well and the stem cells are sloshing around you in abundance.
Has anyone mentioned the smell of sweetcorn yet?
Best regards,
Andy
Hi Amelie,
Has anyone suggested that the pain John is getting in his ribs might be caused by shingles? I had two episodes of shingles in eighteen months prior to diagnosis with MM. The first time, I had classic shingles with the characteristic chicken pox rash and the second time mainly pain around my ribcage but with only a tiny short lived rash. For months during my initial CDT treatment I complained of rib pain identical to shingles, I was told that it was probably a manifestation of Myeloma and nothing was done to treat it. Eventually a small rash appeared, the doctors diagnosed shingles and I was given antivirals, a week later it was gone. Shingles is known to be associated with Myeloma so I expect John's doctors will have already thought of it but you never know.
Best wishes to both of you.
Andy
Hi Only Me,
Sorry your Mum is feeling so low but although at the time it's horrible, it does improve. I had my STC 9 weeks ago and like your mum, my neutrofils zeroed at day 6. On day 7 I was readmitted to hospital with a grumbling temperature(Norwich does STC's with as much time at home as they can). By day 9 my mouth and every thing South of it were awful. Paracetamol worked quite well but lasted two hours leaving a four hour wait in pain. Oramorph was useless. During that night I woke up, then realised that I'd been asleep, then realised that it didn't hurt quite as much. within 24 hours I'd stopped taking painkillers. One of the consultants told me later about a study where they had taken mouth swabs from STC patients and they had detected neutrofils some time before they were found in their blood samples. It seems that neutrofils go first to where they are most needed. Later that day tiny amounts showed in my blood and they sent me home! Yippee!
I'm sorry to burden you with my boring tale but I hope that it illustrates how quickly misery can abate. I hope that this has already happened for your Mum or will happen very soon. Once it does and the tubes are out and her energy gradually returns. as it has for me, it will seem just another memory.
Best wishes to your Mum and to you too.
Andy
Hello Helen,
I'm glad that the big things are going so well for you. The little ones can be very annoying though, can't they? I'm at six weeks after my STC and like you, am doing fine. I still don't know what my PPs are yet though. I still have some hair although I've had to cut it very short so it doesn't look like the moths have been at it. I fantasise that it will be dark when it grows back again. I started to go grey when I was eighteen and have looked like a snowball for over twenty years so if I want dark hair I think I'm going to need to cheat, which is too much like hard work. As you say, a woman's hair is part of her being and losing it must add to the stress during a very stressful time. For us men, looking like we've escaped from Eastenders is the most we can complain about.
I can sympathise with you about dry skin and things. I've been OK until a week or so ago and then my eyes and eyelids started to itch and now I'm getting dry skin and itchy rashes too. Aaaaarg! I'm not a patient person and if it itches it has to be scratched!
I hope your recovery continues and your remission is complete and long.
Best wishes,
Andy
Hi, Thanks for your thoughts.I will of course be guided in all things by my consultant and I am thinking more in terms of a wish list at present. These are such early days for me and I have no way of knowing how my PP levels will respond in the coming months. When and if they get to a suitable state and my consultant advises that it's the right time then of course I'm not going to argue. I'm already getting fed up with the routine of the drugs, being able to do things when I'm taking Dex and not much on the Cyclo. It's so frustrating, there is so much I want to do and the sooner I can be rid of them, if only for a while, the better.
Best wishes,
Andy
Hi Dave,
I think we are sailing a parallel course. I too started treatment with radiotherapy on my thoracic spine with a vertebra pinching my spinal cord and have the same problems with my legs. As I'm feeling much better now and the weather is improving I'm hoping to get out and walk and do much more execise because I have been stuck indoors not doing anything for about five months. I think it's doing some good and I may be kidding myself, but, I think the numbness is receding slightly. Certainly my walking is more fluent now, I'm able to put my feet more or less where I want to and I'm more confident and go for longish walks on my own without worrying that I might get stuck. It might not help the MM but it sure makes me feel much better otherwise. Might be a while before I go for a run again though, which is what I was planning before this bl**dy thing reared it's ugly head.
Best wishes,
Andy
Thank you Min, David & Keith. Your experiences are very helpful, but as you say it's such an individual thing it's, I suppose, what happens in the next few months will decide what will happen and I'm just a bye-stander really. If my paraproteins keep falling at the original rate I should be down to zero by about next Wednesday! Haha! I'm being very cautious about getting too carried away about progress because I don't want the crushing disapointment if it goes pear-shaped for a while. I think I will try to stick out for the lowest PP count I can get and if I can't get it really low I might have to think about not bothering, although I read the other day of a process in which they can screen and seperate PP from the harvested stem cells which is used in some places. I might enquire whether they do this at my hospital. Probably in the USA though.
Best regards,
Andy
