Breast Cancer Now Forum

Jackie, I am sorry that you had to join this group but you have come to the right place.  I was diagnoses with bone met in dec 2011, almost 4 years after my primary diagnosis. for 6 years I was stable, the unfortunately the treatment I was then stopped working, I since had to change treatments a couple of times. I don’t know what treatment you will be on as it depends on your type of cancer but I am sure you will likely have a few sessions of radiotherapy for the pain (It might get worse before it gets better but don’t worry, it will eventually get better. You are also likely to get a bone strengthener, there are many out there, some are tablets, some injections or infusion.  I am sure you must be worries, and I know if I tell you not to worry, you will find it difficult, but it is not a death sentence. Secondary Breast cancer is managed much better than it used to be. Take care. Xx.  ... View more

This is so sad, my thoughts are with her family.  Love to all    ... View more

Hi Suzannah,  Sorry you had to join this elite club. They are obliged to give you a copy of your scan is you want one. They should be able to download it to a CD. You are also entitle to see it on the screen; some onc don't tend to show them as it scares some ladies but put your foot down and ask to see it.  You also should be receiving a copy of the letter they send to your GP which inform them of your diagnosis/ treatment etc. I don't know which hospital you are in but if you can't get suggest that you contact PALS.    Sophie  ... View more

7 1/2 years and going strong.  Xx ... View more

Hi everyone, Many moons ago when I first was diagnosrd with bone mets, I was very active on this thread which I hear fron BCC is the longest running thread on tbe forum. One thing after another I posted more on a Facebook group but I  have been reafing all the posts (well, most) through my email alerts for years. I have bone mets  was on Herceptin for 6 years, kadcyla for one an now on Capecitabine which is doing the tricks. My tumour markers are back in the normal range.  Any way, all this ramble to say, I will make an effort to post here as well.😀♥️ ... View more

I managed to lose a long post. Let s try again.    Alex,  I have been following this thread to almost 6 years but not posting very often. I get the email alerts daily. Ever since my secondary diagnosis I was on herceptin. Then in 2016 my CA153 started rising slowly and in the spring of this year they started to go up sharply. This is when my consultant said she wanted to get to the bottom of this. Scan showed the lymphatic system of my lungs was inflamed; the cancer was on the move. End of August I started Kadcyla and I am happy to report that after 3 treatments, the tumour markers have halved.  As Kadcyla is basically herceptin with chemo, I was silently confident it was going to work.  Kadcyla is a wonder drug. Apparently some ladies from the trial years ago are still on it. It was only made available on the NHS in July and before it was on the drugs fund.  Like for Herceptin you will get regular heart echo. I am tired week one, and resume “normal” life week 2 and 3. It is a targeted chemo, so no hair loss but chemo it is so immune system is weak.  There are a few treatments available after Kadcyla. I have lost my list, if I find it I will post.  My take on this is 5 1/2 on herceptin, I hope to get the same on Kadcyla, by then more treatments should be available.  Xxx ... View more

Hi Tiger,  I have been on this thread for almost 5 years ,but I am more of a lurker. Pain can be a sign of healing. May I ask if you have been put on any bone strengthener? My initial mets were on a rib. After my first coupe of strengthener infusions, I had a burning sensation in the ribs. At the next scan thet rib mets had gone. Nowadays my bone strengthener are in tablet format, but there are also injection. not read the fasting article with chemo. It is not the first time i hear about this, but I can't comment.    Have a great Sunday everyone.    ... View more

I have to say the secondary BCN in Oxford is a blessing. We were promised one over two years ago and I had become cynical when we were told we were getting two (two part time position).I had to contact them 3 times in the past coupe of weeks due to mix up with appointments, wrong hospital, request of lymphdema clinic etc. Every time the isse was solved within two hours. It would have taken me months to solve the issues of duplicate appointments. The really remove some stress in my life.  On the subject of different brands of letrozole or tamoxifen having different side effects, I have to say that I never noticed. For joint pain I take 1000mg of glucosamine daily and have done so since I started tamxifen 8 years ago. Take care ladies. have a great Easter.  ... View more

Carolyn,  The charity is called Second Hope http://www.secondhope.org.uk/    The interview can be seen here.  http://www.itv.com/lorraine/health/charlie-brooks-and-her-friend-lorna-on-secondary-breast-cancer-charity   Private message me if you want to find out more about the online support group she is referring to .  ... View more

Hi Sarah Louise, i don't post here very often but follow the thread closely.  I am also at the Churchill. Breast Cancer Care has a monthly meet up on the first Thursday of every month. There are a few ofus who are local in the group. There is info on BCC website.  I have recently changed treatment due to progression. Still I did well 4 years on letrozole and Hercpetin. Letrozole has been switched for Exemastane. Glad to report that I have had no side effects. Will know in April if it works.  ... View more

I don't contribute very often to this thread but I get email alerts and read every single message.  Today, I need to come and add my voice to the tributes to Helen. Indeed, for the many years I have been on this forum, she has always been a great support at the time of my secondary diagnosis when I was trying to get my head around this horrible disease.    Helen, we will miss you greatly. Fly free, painfree away from this wreched disease. xxx  S.  ... View more

Hi Janette,  I was reading the thread while I was on the phone to Eurotunnel...  If your GP writes a letter to say that you were fit to travel at the time of booking you are OK if you cancel.  If you make a claim, they will need a note of your GP to say that you were fit to travel. The only thing you need to tell them is that if you have been given a terminal diagnosis (less than 6 months).  I hope it helps and that you have a donderful trip in NY.  Sophie  ... View more

Julie,  Thanks for the update on Chris, please do send her my love when you are next in touch.  Sophie xxx ... View more

Bev, thinking of you. Hoping the new treatment is the right one for you. xxx   ... View more

Ladies, The latest news about the funding of some key drugs is worrying. I do know it is not set in stone, still please sign this petition to show your support http://epetitions.direct.gov.uk/petitions/72199 Share with your family and friends, because we are worth it. ... View more

I couldn't agree more Lemondrizzle. Wishing you lovely ladies a happy New Year, painfree and full of good news. Xxxx ... View more

Raising a glass to you all, lovely ladies and to absent friends. Enjoy your day tomorrow. Don't forget to ask for help and don't overdo it. Xxx ... View more