Hello Wendy and Helen
I'd just like to say I found both of your posts quite heartening. You Wendy for doing a 10k run and you Helen for the trip to NZ. Colin and I love to travel so all of that seems miles away for us at the minute. Helen it's great to see that these things might be possible. Wendy also I was so pleased to see that activity is possible; Colin was/is a keen sportsman (always beat me at squash,tennis, golf),most annoying! But at the moment he's got a job to keep his eyes open!
My worry beads are out again because although colin was in hospital last week til Wednesday he has been on antibiotics since he came out and to me doesn't seem much better. He is so so tired. My worry is what if the mm has stopped responding to his treatment and gone off like a rocket again. When rationale I think it might be recovering from the virus? We have the consultant thursday but I'm still worried. Well done to you guys
Vicki and Colin x
Hi Jean
Have read your posts and I feel for you…..and know how you feel. These strong willed men eh? It is so hard to know what to do for the best. I worry day in day out and when the treatments are delayed I worry even more. I hope you and hubby get the best treatment whatever that turns out to be. The thing that makes me cross is that sometimes drug availability comes down to money and like others randomisation does seem very unfair,but then so is mm!
Keep your chins up both…..there's a few weeks football for hubby to look forward to. As for you as everyone keeps telling me look after yourself too. If I can help with any questions please ask although no expert.to date Colin has had the muzzy head, dizzy, metallic taste in mouth, bit grumpy but so far nothing he can't handle (unless he is not saying!)
Best wishes Vicki 🙂
Hi Helen,
Thanks your post has cheered me up! I feel positive most of the time, as does Colin, but he has dipped a bit just recently so I'm looking for all those good news stories like you. We'll keep going,as you do, but sometimes it's hard as you know. Roll on next consultant visit, perhaps mm will have disappeared ha ha!
Vicki
David,
You are an inspiration, keep going, enjoy all you can,remember numbers are only numbers and there to be proved wrong!. Hope the geraniums are doing well 🙂
Vicki x
Helen, thanks very much. It's reassuring and helpful!
Have you had and SCT ? Do you mind me asking how long it took for you to get from the start of the induction therapy to the SCT? I think colin is getting fed up now. He has just completed cycle 7 of dexamethasone,cyclophosphamide and revlimid. We are awaiting results of cycle 6 when we see the consultant next week, fingers crossed. Colin is apprehensive about the SCT due to the worry of infection and the fact he has taken quite a few antibiotics so far.
Thanks for your help. Have a good day
Vicki 🙂
Hi David and anyone else who is listening!,
I was wondering. Colin had a stay in hospital over the bank holiday weekend until Wednesday just gone. Came out Wednesday lunchtime with a load of antibiotics. Looking back he always seems to feel worse at the end of his cycle. Say days 15-21 onwards. This time he finished cycle cycle then 3 days later in hospital with chest infection. Anyone else experienced that? Also currently colin seems to have no energy and seems to go light headed quite a lot. He's had his week off treatment and his treatment delayed a week ( at least).is this normal? My imagination is running riot! Assistance if you can 🙂
Thanks Vicki x
Hi Ann,
So far so good. I know what you mean about feeling useless!. I too ask Colin all the time if he is ok (and I expect he gets fed up with that too).I find it hard sometimes if Colin is very quiet, mainly because I think he might be worrying or sad. With regard to grumpiness think that might be the combination of dexamethasone and generally being fed up of being in pain and I'll (Colin can be like that too). With regard to looking poorly Colin seems to have a sallow look sometimes, or goes the other way and looks really flushed. One thing that he still is, is very very tired. I hope that is normal but like you I worry all the time about what if, what if, what if.
The weathers been good today and I have been able to spend some time in the garden! (no sun bathing ha ha).we did do a little bit of shopping as well but for a very short time as he was completely wiped out. Not sure how Peter fairs but Colin does seem to lose energy quite quickly at the moment. Also he seems to be fed up more, but then I suppose thats because he's been I'll for a while. Wish someone would come up with a cure quick!!!
Enjoy your weekend if you can
Vicki and Colin x
Hello Jen,
Again sorry your family has been touched by this condition. My partner colin was diagnosed in October 2011 and has had 7 cycles of treatment. When he was diagnosed I read every website I could find and they all scared me to death. They were very depressing. I counsel myself to read this one only and correspond with friends on this site. It helps. I too am always tryi g to look for a reason why and even more so tha website that tells me that there is a cure. Sadly at this stage I have found neither the reason nor the cure. That said try to be positive. Get the most out of the information leaflets and the details from the consultant. Colin has one bone lesion by the way. I get the impression that this is common to have one or more lesions (listed as one of the main symptoms).
Eve is right, try to find out as much as possible, from those that know. Write down questions you need to know answers to, because if you're anything like me will forget them when you get to the appointment.
Good luck Vicki 🙂
Hi Jean
Hope all is well with you both. See my post to ann. Colin has been in hospital but out now. He picked up a chest infection. Feels really fed up as he is wondering whether he will ever be fit again. Hope the treatment is going well form your hubby.
Vicki 🙂
Hi Ann and all,
Colin did not got to the consultant yesterday……he's been in hospital:-(
What happened was, last Friday (1st) he started to feel a bit unwell. Mind you he'd not really been right for a week. We had some friends over for a jubilee meal and he was not great all through. Saturday the temperature was going up and down and he was wall to wall sleeping. I just knew something was up. By Sunday morning temperature right up. So off to hospital and there he stayed with a chest infection until Wednesday lunchtime. Miserable bank holiday for both of us. His treatment has been delayed for what is likely to be at least a week and on a boatload of antibiotics. We will see the consultant on 14th now. This mm is such a roller coaster and I know Col feels quite low as he is beginning to wonder whether he will ever feel fit again. As for me I'm just shattered.
I hope you and Peter are doing well. Re the taste buds yes Colin has had ups and downs with that; tea is on and off the agenda, same with vegetables, mostly off alcohol (even a glass of wine), most unusual!. He seems to really be enjoying ribena and milkshake at the moment. And is really loving sweet things, which again is unusual due to him usually being a savoury sort. He tells me he gets a nasty taste in his mouth as well.
Hope all is well with everyone, and for us I hope this weekend is a bit better,even if we don't do anything.
Vicki x
Hello chris
My partner Colin was diagnosed in October 2011. He is also taking dexamethasone. Overall he is not too bad with this but like the others have said sometimes gets a bit grumpy (usual! So what's the difference ?). to be honest I just ignore it. He too has a disrupted sleep pattern and he gets up and reads for a bit, watches tv and the can come back to bed and sleep.I try to categorise the tablets as our friends (odd?) but that's because they are the tools to make the job complete and beat mm. It's not easy chris that's for sure but it will be worth it in the end x
Vicki
Hi Jane,
Welcome.:-) My partner Colin was diagnosed on October 2011. He is on slightly different treatment to you but as many others have said it is a very individual condition and lots of variations on the treatment style. With very best wishes, keep focussed and your chin up. All will be well, it's just a bit of a rocky road.
Vicki
Hello Dai
I have read a number of your posts and you seem so well informed. Colins consultant mentioned that he seemed to secret more light chains than pps. He started at 31000 light chains, with pp of 17. 31000 seems a massively high number when you talk about 540 as a high starting point……I do wonder how col could get to that figure with only one bone lesion And thank goodness for that! I've tried to understand the kappa lambda ratios, but I can't get my head around it, it's seems to be something to do with the balance between the two is in a range of 0.76 to 2 point something. If Colin is now at 1300 light chains and 1.2 pp, is it possible to work out from that how close he is to a 'normal ratio'.
Also I feel a bit confused about the difference in numbers. Although our consultant said it was a high figure, did not seem frantic about it and has been pleased with progress. He has just completed his 7th cycle. I do worry that others seem to have responded quicker than Colin and worry about that too. Your posts are very informative, thanks 🙂
Vicki
Hi Jean,
Glad u found the post useful. From memory they gave us some special cream to rub in, so that should help. Radio therapy just sounded scary. The radiographers etc are lovely people and that helped so much. I was so stressed that I was trying to tell the consultant as much information as I could, she must have thought I was a babbling idiot, but I'm sure she's seen it all before. It definitely helped him with his back. It was the breathlessness and tiredness that concerned him at first…..that was before the current treatment cycles started!!! And it does pass.
Good luck and glad to have been of help,
Vicki x
Hi Ann and Peter,
Hope all going well. Re the radiotherapy. Colin did not lose any hair.his was a one off big dose.we don't know what a big dose actually meant but he had just the one session. As I said they gave him medication for potential sickness/upset tum. Colin said that he felt sick but not enough to have tablets. I recall we were told that the radiation carries on working so there was little effect for a few days, however I did read and Colin felt a delayed breathlessness and lethargy about a week after that lasted for nearly a fortnight. I remember also reading this on the Macmillan website advice re radiotherapy. It did say that it can make you feel very tired. I would recommend the Macmillan site for information too as it even goes into detail about suggested food to give people who are undergoing chemotherapy.
Also with regard to radio we had to rub cream into the area it was directed at I think to stop skin drying out and breaking and/or redness. That was no problem. We did not know what they meant about tatooes. Colin has these brown marks on his back where the radio went in and two little marks where it came out!.otherwise no other signs. I do remember he had a pain in his rib and while after. We did not know what that was but a friend who had radiotherapy following breast cancer said it could have been an exit point that sometimes causes discomfort?
I felt very apprehensive as it was our first visit to the oncology centre and felt very tense (Colin was apprehensive but again we were on adrenalin as we went direct from the consultants appointment to the radiotherapy )so it was a roller coaster. The radiotherapy did help with the back pain too. Again our consultant radiologist was very reassuring and kind.
To be honest it seems like a lifetime ago and it was only October.
Colin went to work today but feels a bit under the weather and tired again tonight! He seems to go up and down like a yo yo at then end of his cycle,which I assume is to do with the medication effect at the end of the cycle. It's his last day of cycle 7 with consultant on 7th June.
