I would appreciate what you ladies think about todays meeting with my consultant.
A bit of history first. I am PR+ but HER2 -. 58 years old with bone mets. One year on Arimidex which stopped working then 4 months on Faslodex which also did not work. Bondronat has also started to give me severe stomach pains so that is finished also.
Walking has become increasingly difficult and I can barely climb the stairs now. At the appointment I reported severe pain in my hips and right shoulder and have been offered radiotherapy. I have had plenty in the past which has been very helpful and I am grateful for that but it is not going to stop the progression.
When pushed he admitted that he is “reluctant” to start me on chemo as I would not tolerate it very well as I have bone mets. He reckoned that I would soon succumb to infection and be in hospital.
This has stunned me as I feel I am being told to go away and accept the inevitable…which is going to be sooner rather than later. ( I have never wanted to know my prognosis)
Are there any other ladies out there who have been told this? Do you think I am interpreting it correctly? I feel he is saying I am beyond help now although I am sure that plenty of others with bone mets are on chemo…I always thought there would be lots of treatment choices for me.
Hi
I have bone and liver mets sec dx was 4yrs ago at first treated liver only with 6x FEC onc said liver would finish me off long before bone mets would. Since Feb taxol and avastin now I am just on avastin and pamidronate which is for the bone mets as they are now in a poor state. I will have my3rd pamidronate on Friday. Onc said my hip needs replacing but because liver has been so bad he didnt think I was up to the operation.
I have always asked for complete honesty as I think we can only really make the right decision with regard to treatment if we know all there is to know.
I am 58yrs old as well, hope this helps I am sure others will soon be along to help and advise.
Love Debsxxx
Hi, are you on any bisphosphonate treatment now? Zometa might help, I’ve read it’s the best bisphophonate to slow down progression, it’s more expensive too so it’s not always offered freely. I have bone mets too and have started my first ever chemo, Xeloda. I don’t think it’s working…hope I’m wrong but will find out more next week. Not sure if Megace, Tamoxifen or Aromasin might be worth a try if you’re pr+…? I’ve been taking the oral Xeloda and it’s been completely symptom free…I would ask about it in your shoes…they can start you on a low dose and see how your bloods tolerate it. It’s hard to remain hopeful at times but hang in there…xx
I too am 58 years old with bone mets… I would have thought you should be offered pamidronate or Zometa, I’ve had both (not at the same time!) now on Bondronat.
Also would you be eligible for any clinical trials? There are good reports of some of the new treatments under development, with or without chemo.
I would also ask your consultant about the possibility of Pamidronate or Zometa. I was on Pamidronate from 2004 up to April of this year and have been switched to Zometa as my bone mets became active again plus I had radiotherapy which stopped the pain.
As Belinda says, Zometa is more expensive but my oncologist fights for all her patients who she thinks may need it and they get it.
Good luck.
I too would push for pamidronate or zometa - both infusions so you should not have the stomach problems with either of them. I have had very extensive bone mets since 2002 and been on pamidronate all that time which has been keeping the bone mets stable.
dawnhc
Hi Ruftikins,
I am shocked! There is definitely a lot of things out there for you to try.
I was diagnosed in April with bone mets, after suffering 6 months of severe back and leg pain. Couldn’t walk, lie down, sit or really do anything but complain. The mets are in my lower back, femur, ribs and sternum, with some abdominal lymph nodes and something suspicious in 1 lung.
They started me on 12 doses of radiation immediately, and great pain killers - Tramadol. At the end of May I began monthly IV Bisphophonates (Zometa). I had a terrible reaction for the first time(which is common), but just a bit of joint pain the 2nd time. They are really supposed to help with stopping progression, and increase bone strength in order to prevent stress fracture - which I already had in 1 rib (OMG the pain!)
A week later, I started weekly Taxol, with alternate weeks of Avastin. I am now 2 months later pain-free (more or less) and beginning to reduce the pain killer dose. Also the numbness and tingling in my leg is much improved.
I also consulted with a top doc in Boston, who said also that I should have exactly the treatment that I am having. So that made me feel happy.
It sounds to me that you should either go back to the consultant, or have a 2nd opinion. Unfortunately one has to be very pushy sometimes when dealing with doctors.When they did my biopsy they did not have enough suitable cells to test for Her2 status. I had to BEG my onc . to have another biopsy. She said that I was neg for the primary so I was probably neg again. But I felt that it was crazy not to know for sure as the status can change. So last week the 2nd biopsy came back 2+. Hah!! So now they are going to do a FISH test on the cells. That one may come back neg - but at least I will know. Peace of mind is important.
I wish you well.Let us know what happens. If nothing else, get them to control your pain, as you will feel a whole lot better.
Penny