I had a wide local excision and axillary node sampling in September. Results came back that there was more tests from the lymph nodes. The bad news is I have bone cancer in quite a few areas. It all made sense as my walking was really bad! Consultant said chemo would be of no help to me. I now have to have bisphosphonates which should have been before Christmas. They could not fit me in so hopefully I will go on Friday 28th December for a couple of hours or how ever long it takes. I am not worried as I no it will help in strengthening the bones, just a bit concerned that there is no chemo and no radiotherapy. Anyone any answers please.
Hi, I’m sorry to hear your news I was diagnosed when my hip fractured, in 2003. I had a hip replacement which has been great, no walking aids needed and I’ve been on bisphosphonates ever since. I still haven’t had chemo as my cancer has been kept in check with hormonal treatment.
The first infusion of bisphosphonates may make you feel a bit flu like the next day but most of us seem to find them trouble free after the initial one.
I feel much better now than I did in 2003…hope this message helps a little…Good Luck.
So sorry to hear about your recent primary and then secondary BC diagnosis – it’s always such a shock to be given these diagnoses, and you’re suddently plummeted into a new scary world, about which you know very little. It’s good that you’ve found this site and these forums – we have a lot of experience and knowledge here, and I hope you get the support and information you need right now.
I’m 57, and had my primary BC diagnosis in 1997, then my secondary (liver & bones) dx in late 2003 – I’m now just over four years into “the last two years of my life”, and feeling pretty good. My BC is ER+ (oestrogen receptive) but HER- (so no Herceptin for me). I’ve been on a tablet bisphosphonate (Bondronat), and aromatase inhibitor (Aromasin) and a tablet chemotherapy (for my liver mets: Xeloda, at a low dose these last two years) since my secondaries diagnosis.
We all have a different response to our many different types of BC, not to mention our various treatments – and our oncologists all seem to have their own particular treatments/drugs that they prescribe for us. I remember that my bone pain (I have bone mets in spine, pelvis, ribs and skull) disappeared quite quickly when I started my bisphosphonates; I also had a blast of rads to reduce pain in two “hot-spots” early on in my treatment. Since then, I’ve been pretty much pain-free, and have had “normal” blood and liver function test results throughout my mets years.
I’m sure you’ll be able to speak to your oncologist or someone from her/his team when you go for your bisphosphonates on Friday, to ask about your treatment options.
And many of us who post on the Secondaries forum had both primary and secondary BC diagnoses at the same time, so I’m also sure you’ll get a lot of responses from them on how their treatments are going.
Good luck on Friday, and please post again if you need more information or support from us.
Thank you all for your prompt answers. I feel so much better now and don’t feel I am in this on my own. It is so hard when you don’t have answers to questions. I asked my oncologist about time but he didn’t really give me an answer. I will ask questions when I go on Friday.
I must add that my family are very supportive my husband is so protective and I feel he tries to do everything for me. My daughter tells him to let me do things, she also is such a help and has been since I was diagnosed.
Welcome to the forums, I thought you might find it useful to read the Breast Cancer Care fact sheet on bisphosphonates so I have posted the link below:-
If you wish to talk things through with one of our helpliners please feel free to call for support, information and a ‘listening ear’, the number is 0808 800 6000 and the line opens again in the monring at 9am.
I was recently diagnosed with bone mets to my pelvis and femur bones. I did start 10 treatments of radiation to my pelvis only on Christmas Eve. The Thursday before that I had my first infusion of Zometa (bisphosphonate). The next day the highest temp I got was 102.6 and felt very flu’ish. The Onc nurse said the cancer would flare up and I’d be hurting which did happen. But over the course of the weekend I did started to feel better. I can keep you posted on how the next one goes but it is my understanding that it is supposed to get better. As for the radiation, I was told by my rad Onc that (on average) it helps alleviate pain for 2/3 of the people treated. I’ve only had four treatments so I can’t honestly say whether it has help or not. It has caused diarrhea and fatigue.
I do have a question to you and the other ladies - do you ever, especially at night, feel that you can feel the cancer spreading through your bones? The aching, burning feeling, and a feeling of void in the bones? Have you or anyone experienced this or am I lossing my marbles?
Will keep you posted after my next treatment.
JanetK
just wanted to echo what belinda has just said…you are definitely not losing your marbles! I had my first infusion of zometa on december 14th and felt I had been really really hit for a couple of days afterwards, aching and burning covers it. My onc assured me that the next one wouldnt be as bad, and that my reaction was on the bad side of normal to it. He said it could not be explained why people had this reaction but it was fairly common.
So good luck with the next one…mine is on Jan 4th with my next chemo
Once again, I’d like to echo Belinda and Catherine on this one too - you are not losing your marbles. Or if you are, there are quite a few of us that are in the same club as well. I feel so paranoid at times.
I describe the pain you described as an ‘angry’ pain - like it is hot and stabbing.
When I said this to the nurse who was doing my bisphosphonate iv the other week, she said that it was not the cancer spreading but the bone changing - ie rebuilding.
I am so nervous about the results of my next lot of scans (I have only had one lot so far) - because I have had this ‘angry’ pain in several areas that werent dx. But, in another way, I am curious …and if there is no further spread, this may make me stop worrying so much iykwim
AneAnne - my husband too tried to do everything for me. It is flattering but drives me mad!!! There will come a day when I wont be able to do everything, and at that point, I will ask for his help. (OMG! That must sound terrible, but I am not a sit-on-my-bum type of person!) It was only when physio from Hospice came and said that he should allow me to do what I feel I can do, that he took a back seat.
I’ve just had my 4th IV and it was Belinda who was my reassurance that things would get better …and they have.
I had the flu-like aches and also sickness after the first one.
(Hospital where I have treatment is right by a retail park - and I always need retail therapy after IV - good excuse anyway!!LOL!!)
Thanks for your replies, and thank you Anne yes husbands do drive you mad trying to do everything!
I had my treatment on Thursday as they couldn’t make it Friday. It was third time lucky trying to find a vein! Felt okay but next day had flu type symptoms and was sick in the evening. Where I went they thought it was a one off but the consultant told me it was more than that so have to check in the new year. Feeling a lot better today.
Its so good to share, you don’t seem on your own.
Thank all of your replies to my question about the spreading feeling. I guess on one hand I can understand why they (the consultants & nurses) don’t tell us all the possible things we may experience but it sure would help to prevent a lot of worrying that something is going wrong.
I have just finished my 12th chemo for breast cancer (6 weeks ago) with no secondaries at initial diagnosis 12 months ago.
I have now got bad pains in my hips and knees and I am not sure if I should be worrying a doctor or if it could just be a) paranoia or b) still as a result of the Taxoters pains in my feet etc making me walk strangely.
I was told that due to over 50% of my lymph nodes being infected that I had a 75% chance of secondaries so this may be paranioa, but I have no idea what I should be waiting for!
I am so sorry you are all in this boat, but glad this forum offers support and strength - sorry to be asking such banal questions!
The only way around this one is to report the symptoms, it could well be what you say - the taxotere- but you need to share your concern with the doctors otherwise you will just worry yourself sick!!
One thing I have learned is that you simply cant say what secondaries would feel like, you can only act on your concerms and the doctors can act if they see anything out of the ordinary. I have bone mets as well and the symptoms are totally negligible, they were picked up with other mets…this isnt that unusual apparently. Its not how I thought it would be or what I would be looking out for.
anyway I hope that makes sense , and best wishes to you