Hi Rebecca, Many thanks for your good wishes. My celebrating continued into the wee sma’ hours due to a surprise party my sister and cousin arranged. I won’t be moving too fast this morning, just because of tiredness 🙂🍷🍾.
Do you or a family member have MM?(hope you don’t mind me asking)
Hi Jenny, I’m sorry to hear your dad is receiving treatment for mm. I do think that it can be harder at times for family and friends to watch a loved one go through a cancer. The feeling of helplessness and despair must be dreadful. I know I felt guilty about putting the burden of mm on my family but on the other hand I also know that my family 1…[Read more]
Many thanks David. I’m delighted to hear you are 6 years down the line. I agree the first few months getting your head round things are tough, and life in general has to change a bit to accommodate hospital appointments, tiredness, pain etc. I too run a support group, along with a friend. I would highly recommend it to anyone considering whether t…[Read more]
It is ten years today since I was diagnosed (age 44) and whilst that is not to be celebrated I am celebrating still being here. I had the gold standard treatment of Chemo, SCT and recovery over a period of a year, giving me full remission with non detectable pp until two years ago-they are only at 6 now. I have had no treatment other than…[Read more]
Morning, I too am sorry to hear life is a bit rough for your husband and therefore you at the moment. I agree with what Rebecca says. After my treatment 8 years ago I felt very tired indeed, I would fall asleep anywhere any time, even the Hard Rock Cafe in London! I was unaware that my mood was low, my husband mentioned it to my Macmillan nurse…[Read more]
Morning Suzi and Jan. Sorry to hear your husband has had to stop having his bone strengthening infusions. My experience is that I’ve been on primidronate infusions for 8 years since my diagnosis. I was initially told they didn’t know what side effects long term use would have as there were not enough patients surviving !! Thankfully that has…[Read more]
I had a similar situation a few years ago, not terribly long after my SC treatment. It turned out to be no more than calcification. Not sure of any link between Myeloma and breast cancer. Good luck
I know and understand how you feel, there's times when you would just like to go back to normal, unfortunately we can't . It does get easier to cope with the more you know about it. Sadly the bone pain is a constant reminder but if you can get that under control you will feel loads better. I have not been to a mm conference before so it will be…[Read more]
Hi Ann, good to hear from you,
A wee cruise sounds good. If you both feel well enough you should go for it.its such a benefit to do things that are normal. You may find your not as able to do as much as you may previously have done, but just to be away and spend quality time together I'm sure would be lovely. We had to cancel our 2 week med…[Read more]
I was interested to hear about your pain medication, I like you don't do hoovering or at least not much, I can manage a quick run round the lounge but can't do the whole house or lift the Hoover upstairs because of pain, Mike does a lot for me. I still do shopping but prefer where possible someone to come with me as I can't…[Read more]
Thanks for your reply. Have caught up with my sleep now. Made a big mistake at school today and played a bit of netball with the staff and kids, they were short and I didn't want to let them down so I did the centre passes only and have spent the night in a lot of pain. I should know by now not to do such things but when you feel…[Read more]
Hi Ann, good to hear that your pain relief has gotten less. I take 20 mgs of OxyContin at night and 15mgs in the morning, I then have 5mgs of breakthrough which I can take at anytime. If I started to need a lot of breakthrough then the GP would up my daily doses. I still get tired easily but nothing like when I was having my treatment.
Glad to…[Read more]
Hello Ann , have been reading your story with interest. Sorry you've had a rough time. Good news that not too many vertebrae are damaged. I have only two affected but that's enough, also have rib and hip pain for which I take oxynorm (morphine). With regard to support, do you have a group near by? I do, it's a great help. We meet four times a year…[Read more]
Morning Jan, can't sleep tonight so have been on the site and read your story with interest . Mine is very similar in that I have vertebrae trouble , only two, and trouble with painful ribs . I take oxynorm and that really does help. I had a SCT four and a half years ago after six cycles of treatment and all is well at the moment. It's a tough…[Read more]
Hi Clare, with a good response like your mum has had I think it would be worth having the SCT. I had it over four years ago and felt it consolidated the chemo treatment and gave me a better chance of a good remission. I have been apart from a monthly infusion of primidrinate (bone strengthner), treatment free for over four years and lead a…[Read more]
hello Mika, I've just joined the site and read your story. What hope you give, thanks so much. I've had myeloma for five years and have been symptom and drug free for four years now and would be delighted to be around for 20 Year plus.
I had the standard treatment then a stem cell transplant. It hard at the time but when you've got people to…[Read more]
Hi Susanne, I've just joined the site and read your message , hope your feeling okay. I was diagnosed five years ago and had six cycles of CVad treatment then a sct. It was a rough time but you get through,you and your family have been through a lot already that I'm sure you'll manage just a wee bit more. It's worth the fight just to be with…[Read more]