Brilliant news Susie Praying that your PP’s continue to drop. Hope you enjoyed Christmas. So glad you feel able to go forward again.
I finished cycle 8 and am now on course for a stem cell transplant, seeing the team on 2nd January, although I have an MRI on 31st December because of lesions on my upper spine.
Still the treatment is working I am hoping for remission status after the transplant somewhere about March I guess
Keep smiling Susie and heres hoping for a very healthy, happy and joyous new year for you xx
Dorothy xx
Hi Susie
Hope you get a good response from the secretary and yes they should give you copies of all the letters.
You have had a fantastic response all ready 63 – 8 in two cycles. I am on Cycle 8 and still have the Septarin and all the other raft of drugs. I started with 4 cycles but then went to 6 then 8 my Proteins came down slowly from 49 to 9 and I am waiting to see the latest results on Monday 8th. They only give 8 cycles so I am looking at a Stem cell transplant starting 5th January. The side effects are difficult at times, especially the neuropathy in my feet, and the tiredness/exhaustion. However I have good days when I feel I can just get on with things but when I have to rest I just have to rest no two ways about it.
Keep smiling and being positive Susie, I find a smile helps svn on bad days
Bless you
Dorothy
Hi Susie
Yes I am on Septarin (co- trimoxozole)
I always write a journal and questions before I go to the consultant meeting – and I always write what he has said and any response to questions as it helps me remember later.
And Yes I always receive copies of letters after each consultation I keep them in a file and mark anything I want to ask about, or don’t understand or am confused about because it dosnt match up with what was said to me.
As I said my consultant is young, passionate and very patient friendly, he really seems to understand how things are for us ..I am very fortunate with him.
Do keep strong Susie, I am 60, and was a teacher in a former time so I tend to be a bit questing but we all need to feel we are getting the best, we deserve to be kept informed and to be able to ask questions so that we can make informed and right decisions, treatment is in partnership …not done to us but with us …thinking of you
Dorothy
Hi Susie
Sounds like you have a very poor team and consultant. I cannot praise my team enough, although there is a new registrar who is less than helpful …but i have are a complaint about his manner he messed up my drugs and appointment time ..easily sorted by the admin in my team. We had a coffee morning this week in the clinic and the consultant came, he brought all the team and stayed for over an hour talking to patients, families and being very supportive.
Regarding your mouth I am on cycle 8 my mouth is very sore, ulcers and no taste. I have the Nystatin and simple mouthwash but again no alcohol should be in it, I agree with Alan spicy food and fizzy drinks help, I now have fizzy water with lots of ice. But the hot mouth, and ulcers still persist. I am hoping that two weeks off treatment over Christmas will help. Then I am preparing for a Stem Cell transplant so more side effects and bad ones too.
Please make some approach to your hospital about your consultant it seems he needs to concentrate on his patients and their needs and get a better bedside manner. we patients must be proactive in order to get progress. Hope you are feeling better
Bless you
Dorothy
Not an expert just a relapsed patient. My paraproteins began to rise slowly but took well over year or so to get to the point when extra investigations were needed. I am now on Velcade treatment regimen after X-ray, MRI, ultrasound, bloods etc and consultations. It is hard to give any advice as every patient is different and consultants have their own regimen as do the hospitals etc. I make lots of notes and write all questions to ask at my clinic appointment…remember there are no stupid questions and you should ask ANYTHING no matter how daft it may seem. I don’t know where you are but my team have specialist nurses for every patient and family.
I am so sorry you are having some real concerns, living with Myeloma is not easy, harder for partners we feel as my husband gets frustrated too at times.
Hope the nurse’s advice is helpful, you can get some booklets from Myeloma UK too.
Praying that you and your husband are able to realx a little and take your concerns/questions to your team.
Bestest
Dorothy
I am on cycle 8 now ….last one and have some mouth soreness again no ulcers. Try Nystatin from your doc or hospital. I also find ice chipped and sucked works well. I have loads of ice with cold drinks and have to have hot drinks really hot. My taste is always up and down, I have real difficulty with taste and smell too. I have fizzy water and lots of coke (which I would not normally drink BUT it does cut through the goop)
Do you have Corsodyl or specialist mouthwash from the hospital…it’s worth sorting out now, before it gets any worse but what is important is not to let it get a hold.
Hope you’re feeling better soon – keep smiling.
Love
Dorothy
Hi Susie So glad you are feeling more positive about the treatment and doing well on your third cycle. I agree the 8th day is often the worst but not too difficult once you know how to deal with the side effects.
Difficult to say about the referral as the consultant will want you to have the best possible treatment – it is worth discussing this with your team and getting a face to face thought/consultation on why they have cozen this hospital rather than a closer one. If you are unwell it is perfectly reasonable to cancel or put off an appointment as you need to be on top of things to cope with what you may hear/treatment you may need to have. Be bold and strong write everything down, questions and answers and do push your own thoughts and ideas too.I find keeping a journal really helps to explain what is going on with me on a daily basis and to remind me what I want to ask at clinic/treatment sessions. Good luck. Dorothy
Hi Susie
Glad you are feeling more positive today – sorry you live so far from me, do try the macmillan nurses, I have a specialist nurse I can contact any time, He works at the Royal Liverpool and is part of the team. He is amazingly knowledgable and supportive on all sorts of levels not just the myeloma, but benefits, access to alternative therapy, what to do if you are worried etc. Not sure if your hospital will have these nurses but speaking to Macmillan will give you some answers.
Keep smiling and stay strong
Dorothy
Hi Susie – hope all is going well with your treatment, I have just started cycle 7 and will go on to 8 cycles now as the ops are now 6.7 so my consultant is sure they will continue to drop. Yes I agree the side effects of treatment are a struggle but you will get through with help,support band a positive outlook. I try to concentrate on the good days, I take the cyclophosomide, dex and other stuff on Tuesday morning, then have Velcade Tuesday afternoon, tuesday is usually what I call a whizzy day thanks to the steroids…Wednesday is good too so I go with the flow…hope you have lots of support. Try the Macmillan Nurses, they are great at helping and listening. Take each day as it comes and listen to your body, do what you want when you want and go girlie, You don’t say where you are if you are in or near Liverpool I could give you more support. If not look for a local Myeloma Support group too. best wishes
Dorothy xx
Hi Susie
Just reading through a few post and found yours, I have relapsed Myeloma and am on cycle 6 od Velcade, cyclophosomide and dexamehtasone I am exhausted most days and have the side effects you mention. However to encourage you I had initial treatment 10 years ago with a stem cell transplant and I truly believe it gave me a good/better remission time. Although this treatment regime is a real struggle i am hoping for another 10 years
best of luck
Dorothy
Just reading your post I too have blurred eyes but can assure you it gets better after the treatment stops. Keep positive and keep smiling. I had CVAD and thalidomide 10 years ago and have just relapsed – am now on Velcade I am now cycle 6 and still responding well .
