Hi Maureen, to say what happened was galling is an understatement. At least it’s over with and Ian is not in pain anymore.
I do hope you have a nice Christmas in London and that the New Year brings something good into your life.
Richard
Well, a little update, I had a visit to the hospital today and my wife came along, She’s brilliant at research whenever the Medics come out with something new and acts as a very good interpreter as well (German Hospital). She’s also very good at sniffing out Bullshit which I’ve never had from this hospital.
Anyway, we discussed various options and decided to increase Revlimid back to 25mg and return to monthly blood checks. Got home and the doctor phoned me to say that the IgG has infact dropped, only by about 0.1 but after something like 8 months of continual increase, this is good news. I don’t know why it’s happened, if anything it should be going up further as there’s been a lot of stress over the last few months plus going from one cold to another over the last few weeks and Bronchitis in the Summer. Anyway, we see what happens after Chrimbo.
Maureen, really sorry to hear you lost Ian last month.I know you tried everything and didn’t stop fighting for him even when he was at his lowest. Please keep an eye on the Forum, be nice to hear how you get on post MM. Now’s the time to look after yourself.
Hi Rebecca,
At least with Revlimid, we know that it will stop working at sometime, anyway I was bored with it, the neuropathy is just so boring and as for the stomach cramps, calf muscle cramps and the other side effects, I’ve had those and think I’m ready to try some new ones. Joking apart, I have an MRT at the end of next week and once the results are back, I’ll talk to my Doctor about options. He has suggested Carfilzomib. I’m half way through a training course at the moment and I really don’t want to break off because the stress and hassle of the course would make it very hard to begin again. My German isn’t that good as for my written German, don’t ask. Like all courses, the use of plain language is forbidden and the use of one word to describe something is banned when 10 fancy words will do. Anyway, after all that, Health comes first.
So far my options are:
do nothing – very unwise.
Carfilzomib with a bit of Dexy. My wife will go ape when I start taking Dexy again, could be grounds for Divorce.
Increase Revlimid dosage from 10mg to 25mg. That will only be a short term solution.
Consult a witch doctor but I don’t think there at that many in Germany.
It’s just a shame because Revlimid got my IgG down to 7 which meant we could start having something like a normal life.
Hi Angela, time flies! It got better because last summer I stopped taking Dexy and the Revlimid has been reduced to 10mg. Had an MRT scan last month, bone damage is stable and frankly doesn’t really bother me. I do get increased bone pain in my shoulders if I don’t drink enough or exercise enough, I have a season ticket for the local pool but I’ve just been too lazy to use it.
My personal trainer (my wife) keeps a good eye on me and keeps track of my mental wellbeing as well as physical. I’m still cycling to work although these last few days have been particularly cold here. I think it was still -10 at around 8 this morning.
As for learning new skills, I have applied for further training which my employers have agreed to. I’m just waiting to see if I have a place on the course which starts in a couple of weeks, Really, mental attitude is as important as any medication in fighting MM. February next year will be 5 years since diagnosis so providing Revlimid keeps working, I ought to organise something.
It’s good to hear that Graham is doing well, the little bit of work he has will certainly help keep him occupied and I think that’s half the battle – not to dwell on the MM.
So let’s see how we’ve got on in a years time.
Richard
Hi Dean,
I’ve not been on the site for a while but I had my SCT at about the same time as Rebecca, just about everyone here who made it to SCT managed it and was back home within weeks, it isn’t easy but it is doable. Don’t worry if it is not a great success because there are other options. Mine didn’t really work, the medics were talking about doing a second which I refused, if the first didn’t work than why should the second? I was stable for a year and a bit then the IgG went up so they put me on Revlimid. My IgG is so low I’m classed as having almost total remission, I take only 4mg of Rev a day, I don’t need Dexy or Contrimforte anymore and just have a 3 monthly blood check. So, make the most of the SCT but it’s not the be all and end all of treatment.
Richard
Hi Eve, great to hear from you again, just a shame about your news. It’s a case of using life’s previous experiences to help you with todays new problems. I am sure you’ll be most welcome here whenever you need a chat and of course, being the Oracle that you are, there are a lot of people that will need your advice.
As for Slim, it doesn’t seem like 2 years has passed but I suppose it’s a good thing that it seems like yesterday. I hope you’ve learnt one thing through the Forum and that is treatment doesn’t neccessarily mean the end to doing what you want to do.
Had my SCT in Jan’14. Prepare yourself mentally, it is not easy and you will feel low especially if you have the nausea and diarrhea but in the grand scheme of things it won’t last long. Do everything the nurses tell you. I was told to change my toothbrush every week to reduce the risk of infection. I had to change my own bedding everyday, the nurses were not going to do it for me. I had an exercise bike in the room which I used and a lung exerciser. These are important. Don’t think the SCT will be an automatic cure, for me and others it was a failure, but it does not mean there aren’t other options. I suppose the other thing is to use the time to reassess your life because it will never be the same again. Not much else to say really, everyone is different and will react differently, good luck with it.
Hi there,
Rebecca speaks a lot of sense, people seem to concentrate so much on the inflicted to the detriment of the carer but the role of the carer is as important as the medics. Rebecca and Cashong’s point about tough love is important, my wife gave me s..t some days and at the time I hated her for it but thank her now. It is not easy when your future seems to be in tatters but it is not the end of the world. Your husband will be tired and sleeping is part of MM, I still need a kip now in the afternoon, but he needs to be given tasks to do, don’t do everything for him. During my SCT (in Germany) the nurses made me change my bedding every day, they brought in fresh everyday and no matter how weak or nauseus I felt, I had to do it. It’s all about being active, getting back self worth and purpose to lead a normal life.
After my initial diagnosis, I came out of hospital still suffering the after affects of Pneumonia, PAD chemo and diarrhea when my wife made me walk in the forest, 1st day 3km, next day 6km and the next 10km. It hurt but I think fitness is the key to recovery and positive mental attitude. Life will never be the same but it doesn’t mean your husband has to lock himself away and wallow in self pity. Introduce some structure to the day, e.g when you expect him to get up, small jobs to be done and time for the all important snooze. Has he any friends that can take him out for the afternoon? If he says he doesn’t want to go then make him. You also need the same for your own health, if you’re not there then he’ll have to do things for himself. I’m not talking seperation, just an afternoon or so away. It’s a really nasty mentally as well as physically draining illness for both the patient and the carer but a positive attitude will lead to a more positive life, after all if ex-forces amputees can walk to the Southpole then a little walk in the park for an MM sufferer should be nothing.
Can’t help with work issues but if worse comes and you need to claim for ESA you should be put in the Support Group and that means you will be entitled to the higher amount with a review every 2 years. It’s still pants but at least it’s better than a lot of others.
Hi Stanley, good to know things are going well, know what you mean about colds, my daughter picked up a cold from school and it’s hit me really viciously. The system here in Germany is that I have to see my GP first for initial treatment and then go to the consultant if it gets really bad. So far just feeling washed out, my GP phas prescribed antibiotics and checked me out for Pneumonia, I’m hoping it won’t last too long.
Like you we are trying to make the most of things before the MM raises it’s ugly head again. I’m on Revlimid as a maintenance drug now with 3 monthly blood checks so still doing alright. Make the most of things and enjoy the exercise as I believe it does help to manage the MM. Enjoy Barcelona.
Richard
Hi there, really sorry to hear about your loss but at 87 your mother most certainly outlived a lot of other people. Time to remember the good times and it’s really good to know that the MM didn’t overall cause her pain or too much discomfort.
All the best for the future
Nice to hear you’re still around and making the most of things. Shame about the 40mg dose, hopefully one day they may be able to reduce it. At least with the sleepless nights we know we will hear from you as that’s when you tend to post.
Richard
Can’t help you with the Marmite craving but when I had my SCT I had a craving for Gingsters Cornish Pasties. I had no chance of getting one as I was still in isolation in a German hospital. It was absolute torture.
Hi Lorraine,
Well, for a 2nd SCT I think for me it will be done after all other options have been exhausetd. As I said the first one didn’t really working in thjat it reduced my IgG from 36 down to 24. I think the other problem is that whgen they harvest the stemcells, they cannot guarentee they have removed all the affected paraprotein cells so naturally if you have a high number than there is a chance that a high number will be returned into the blood. So if I do go for a second than I would want a new Stemcell harvest.
Talking about change in taste buds, I use to dislike Blue cheese, now I have to have it nearly everyday, post SCT Cinnammon gives me Diarrhea, my wife thinks that’s because we were using a cheap form of Cinnamon, not the pukka stuff. I’m not so sure.
The worsdt thing about eating was the constant metallic taste in the mouth, I didnn’t touch coffee for 6 months.
Richard
Hi there,
Sorry to hear about your Liver problem and I had something very similar when I first started with Chemo. I had PAD which caused a very high increase in Liver enzymes, so much so the Medics stopped the Chemo for a couple of months hoping the enzymes would drop. They did eventually but it was a tough call whether to continue Chemo or wait longer. Now, Revlimid is known to have side effects on the Liver and it’s derived from Thalidomide so I wonder whether it’s the Thal that’s causing your problems. The Velcade will cause various levels of Neuropathy, like everything else to do with MM it’s different for everyone. After the Liver problems they put me on VCD – Velcade/Cyc/Dexy, I haven’t had anymore Liver problems since and have since my SCT relapsed. So I’ve been on Revlimid and Dexy initially to reduce my IgG and now as a maintenance treatment. So far so good but unfortunately Rev will stop working one day.
Anyway, the best thing is as Tony say’s contact the Myeloma nurses if you need advice, I’ve always found them really helpful.
