Thank you for the suggestion. I have managed to get some insurance. It was expensive but a third less than the first quote. The insurer told me that its expensive because of the bone marrow mets.
The side effects I've had from denosumab are muscle and joint pain and a few twitches, but the pain could be from the cancer or the letrozole. I have to say, I don't think the side effects are anything to worry about and I hardly felt the injection yesterday.
It sounds like you've had it tough with the chemo and cellulitis. I hope the new treatment helps.
We're off to see the northern lights in just over 2 weeks. We're flying and I can't wait.
The sewing groups I attend help keep me going. There are groups all over the place and they're usually very welcoming. Try the library or your local knitting or sewing shop or there are some great YouTube videos which teach crocheting.
Bye for now
Just thought I would respond to your post.
I was diagnosed with breast cancer and bone mets at same time 2009.
I had a mammogram Jan 2008. I noticed myself slight indentation in July 2009 like you mine is lobular seemingly it does not show up on mammograms as it starts off at soft tissue rather than a lump . Only 10% have this one.
Have you tried Insure With travel insurance ? I have used them a couple of times. I only paid £60 for 2 week holiday in Cyprus June last. May be how insurance is high because not long since your last chemo. Over the years I have been quoted £1000.
Thank you for your posts and kind offer to talk. It’s good to hear from others who are in the same boat - there don’t seem to be many on the forum who were diagnosed with MBC at first diagnosis.
I’m really keen to get the last chemo session out of the way. It was supposed to have happened last week, but I’ve had cellulitis which has taken too long to clear. I couldn’t have the chemo because the infection was still present. I’ve got a scan in mid February and see the oncologist in March when I will presumably be told how successful the treatment to date has been. I will continue to have hormone therapy every 3 weeks for as long as it works. I have to say that the chemo hasn’t been bad as I thought. The side effects have been managed well by the meds or perhaps I’ve just been lucky. Apart from the cellulitis!
Likewise, I’m trying to take things day by day and keep myself busy. Sewing sounds like a therapeutic thing to do. I thought about learning to crochet but needless to say thinking about it is as far as I’ve got!
When are you off to see the Northern LIghts? You must be so looking forward to it. Are you flying or taking a cruise?
Have you had any side effects from the denosumab injections? Just curious as I recently had my first injection.
Anyway, I had better start dinner!
I hope your last chemo goes as smoothly as these things can. I can't imagine how you must be feeling and I am here if you would like to talk. What have you been told to expect from the chemo? I have been told that chemo is probably the next step for me, but I'm hoping to put it off for as long as possible. I feel generally okay even if I do get tired more easily than I used to.
I had my monthly denosumab injection this morning. My next visit to the hospital is a week on Thursday and I'll have my bloods done then. I'm crossing my fingers for good news.
I've spent the day do far sewing, I'm making a patchwork quilt, but must fo a few chores now.
How are you doing? Happy to chat about treatment. Last chemo session is on Wednesday and it can’t come soon enough!
I was diagnosed with primary and secondary cancer at the same time last October. I'd had regular mammograms, one just last year, but even when I was diagnosed and a mammogram was done that day the doctors still couldn't find the primary. I have invasive lobular breast cancer that has spread to my bone marrow, bones and lymph nodes. I have a tumour in my spine. I've only had the one CT scan, which was last summer. The doctor has told me they'll schedule one for the beginning of March.
My treatment is letrozole, denosumab injections every 28 days, calcium supplements and one cycle of abemaciclib. My blood counts were low to start with and plummeted even further, so the abemaciclib was stopped. I took a short course of steroids in the hope that my blood counts would improve but they didn't. I've had a blood transfusion too and that made me feel better. I felt very tired and sick while I was taking the abemaciclib and had to take anti-nausea tablets. My main symptom is back ache and I'm taking stronger pain killers now. They bung me up and make me feel queasy so more tablets to counteract the side effects.
I've not had a good day today as I've been trying to get holiday insurance so that my husband and I can go on a northern lights trip. Having to go through my history only to be told no by almost everyone was tough. I managed to get insurance in the end at £640 for a 5 night trip. Sorry, that sounds pathetic. I'm going on the holiday of a lifetime and I am really excited about it.
Most of the time I'm okay. I keep active and social and don't let this disease stop me from living my life.
If you have any questions or just want to talk I'd be happy to hear from you. Good luck.
Same boat as you and would be interested to hear from others too. I have recently been diagnosed and start my treatment next week. I started with just a spread to my lymph nodes last week but after a PET CT have spots in liver and pelvis 😩 I’m also triple positive.
I was diagnosed at 49 with primary and secondary breast cancer (in the lungs and now it appears the spine) in September. My final chemo session is next week and hormone therapy (I'm HER-2, ER and PR positive) will continue every three weeks thereafter. I flip between feeling quite positive to utter despair. It would be great to hear from anyone who has had to cope with this double-whammy at first diagnosis.