Hello Julie and Homer,
Julie, no, paracetemol wasn’t suggested but next time I’ll take some and see if that helps. I do feel better this morning and the pain is subsiding much to my relief.
Homer good luck with your scan today. I hope the chemo has worked and you can chase Mr Glum away for the weekend. Let us know how it goes.
Thank you for your advice.
Lol
Myfanwy
Seems like we go up and down with our moods. Normally I’m a very positive person and have only occasional blips, but this morning I cried because I didn’t get the recycling box out in time, for them to empty. How stupid is that? Now we’ve got to wait another 2 weeks, by which time we may have had another dump of snow. Yes I’m in Scotland - not even in the Highlands, but sunny Dunny (Dunbar) where the snow still lies and the pavements are treacherous. I’ve already fallen once and am petrified of going A over T again.
Right Isobel…pull yourself together, get dressed and go and do something…!
It is weird how you can get these little blips so suddenly. I had one this week - fun night out but bumped into my old boss who i had assumed didn’t know about the whole cancer thing as she’s someone i thought would have been in touch. Turned out she did know but i think had just felt awkward or didn’t know what to say and then the longer she left it the harder it was to get in contact. Don’t think she knows the whole story though. Was nice to see her and catch up but for some reason i just felt this little dark cloud descend later that night . I suppose we have every reason to have our down days -even when we are trying our best to remain upbeat. even ‘good news’ is all relative, we now quite happily settle for a ‘lack of bad news’ instead! - as my partner said once after i got back from a visit to my onc with some ‘thank god it hasn’t spread there yet’ test results - “well, I suppose it’s the more positive end of ‘sh*t’”!
DGW X
Hello,
Just a bit of a moan really. I wasn’t in any pain at all until I had my first zol infusion last Wednesday, now I have to take pain killers as I ache all the time - that sort of ache when you’ve sat on an uncomfortable chair too long. Does anyone know if this will go or will I be lumbered with it as a side effect of Zol treatment.
Myfanwy 18
hi myfanwy
I had aches on my first infusion and then nothing at all ever since. You might have aches on next one, but the word is that most folks don’t really have much in the way of aches after that
x sarah
I hope you don’t mind me joining in on this thread I just would appreciate a bit of advice. I finished my active treatment Chemo and Rads in October this year and was referred for a nuclear bone scan at my follow up appt with my Onc early December. I have now had the results of this scan and they are saying there is a ‘hot spot’ on my T12? (I think). I have had a blood test and they will be putting my case to the MDT meeting next week. I am devestated by this news, I haven’t got any real pain as such (just what I thought was normal aches and stiffness due to Arimidex) so it has come as a shock.
I am in limbo at the moment and waiting to hear what other tests/treatment I need and I know you all understand how hard this is. I don’t really know if the ‘hot spots’ are bone mets but I have been told that with my history (large tumour and lymph node involvement are taking it very seriously) but I suppose I am thinking the worst as there does not seem to be any other explanation for the hotspot in the middle of my back.
I gather from your posts there seems to be a sort of ‘pecking order’ with how they treat bone mets and maybe I am jumping the gun a bit but it would be helpful to know what is likely treatment I could be offered if it is mets - is it more Chemo ?(I have only just started getting some hair), do they operate? or are there other options.
I am currently awaiting contact from the hosptial for an appt with my Onc.
x
Hi Saffronseed,
I had a CT scan and based on that, was sent for a bone scan as there was some concern re L3 in my spine. Followin the bone scan I was told that I had mets in both my L4 and my sternum but this is 10 years after my initial DX.
I wanted this to be double checked and requested a PET/CT scan which my cons. wasn’t too keen on doing as they don’t have experience of reading the results… He has suggested an MRI scan which I have accepted but have told him that I still want the PET/CT scan and have BUPA if a specialist is needed.
I think that all these tests are looked at together to get an overall picture (excuse the pun!) of what is going on and I’d suggest you push for as many as possible!
I was also prescribed the bisphosphonate (bone strengthener) Fosomax by my GP (should really have been the onc…) and have requested Zometa which they will only give to me through BUPA. I’m not taking anything though until I have a definitive answer as to whether these are indeed mets or osteoarthritis/osteopenia.
Being “in limbo” is the hardest bit isn’t it, I’m with you there! I really want some answers before Xmas but know that this is highly unlikely…
Take care and let me know how you get on with your Onc.
x
Hi saffronseed, good luck with your appointment. I was diagnosed with bone mets from the very beginning, in 2003. I was started on Tamoxifen, then Arimidex which held everything in check until 2008 when I started my first chemo, Xeloda tablets. I’m still on the tablets and my bones are in great shape, with lots of healing areas and no bone pain at all. Unfortunatly I now have a (possible) ovarian met so I might be changing treatments next year. Since 2003 I have been on bisphosphonates, at first pamidronate and now bondronat tablets.
Take Care…xx
And good luck to sweetanimo, oh the waiting is the hardest…xx
Hi Saffron Seed. I am another lady with bone mets. I have 5 "hot spots " on ribs, hips and spine. I was diagnosed about 6 weeks into my chemo for primary BC. I was grade 3 with lymph node involvement. Anyway, I was terrified at first, but gradually calmed down when I realised it wasnt a death sentence. I take a daily tablet like Belinda called Bondronat and for almost 2 years have been absolutely fine. Just recently, investigations (due to severe back and leg pain) have discovered a tumor on my lower spine L5. I meet the spinal surgeon tomorrow to find out whether they are going to do a vertoplasty (bad spelling) which is an op where they inject cement or acrylic into the area or possibly a course of radiotherapy. I have spoken on here to a few ladies who have had this op and are doing brilliantly so I am not too concerned - just want to get on with it !! You should read some of the secondary threads on here - some very inspiring stories - it really helped me when I was first diagnosed. I wish you well - let us know how you progress and dont hesitate to get in touch if you want more info - love and best wishes to you, Debs x
Hi Saffron Seed
I am in the same position as you - a single spinal met, if your hot spot is confirmed as a met, and it might not be. If it is confirmed, you have what is called oligometastases, ie a single distant met which is fairly rare (about 1 - 3% of cases) - and I would urge you to read some of the new research on the subject, specifically from the Anderson Centre in Texas. I’ll dig out a link for you later.
A brief summary - it is now believed by some oncologists that it may be possible to cure a percentage of bc patients with oligometastases with the appropriate treatment, or at least achieve much longer term survival. The two centres with the best bc survival rates - the Anderson Centre in the US and Charing Cross in the UK, are now taking this approach. It involves the most aggressive treatment possible both for the primary bc and the met. So for the primary bc the protocol is surgery, chemo and rads, and for the met surgery and/or high dose rads, followed by targeted therapy - hormone therapy, Avastin etc.
The high dose rads is controversial as I expect you are aware, a high dose cannot be repeated. I had an obliterative dose on my spine, with the expectation of completely killing the tumour, with the understanding that should it be unsuccessful and I ever need further rads to the tumour it would probably be possible to have Cyberknife - either through my insurance or self funded (it’s very expensive, and I am aware for many this will not be possible).
I started my treatment last October and finished rads in July. I am now on Avastin and Zometa, shortly changing to Femara and bone tabs. I had scans last week that show a dramatic reduction in activity in the met and no new areas of concern - bone scans are imprecise, so it may take a while to know whether the met has completely disappeared.
You may think this is a high risk strategy and not for you - I did the research myself and asked my onc to go with it. Usually the treatment for bone mets is essentially palliative - hormone therapy if appropriate, bone drugs and rads only when required. My onc agreed I was a special case and it was worth a try. I thought I had a one off chance to intervene and change the course of my disease, and I’m very glad I did. I may just be disease free.
Please feel free to PM me if you would like further info. If you want to go this route, you may need to be prepared for a bit of a fight with your onc and to go armed with research.
Good luck
Finty xxx
Saffron Seed - This is a long article from 2002 and things have moved on since then, but it is a good summary of the issues and the candidates that may benefit from this approach:
jco.ascopubs.org/content/20/3/620.full
The best bits are at the end!
finty xx
Sweetanimo - have just read your comment, and depending on your scan results, the above article may interest you too.
finty xx
Thanks Finty,
Just fighting with the NHS to get my MRI scan and results before Christmas…
Will keep you posted.
xx
Thank you all for your kind words and information - it is so overwhelming to take in all the information.
Finty thanks for the link - it sounds really interesting but like you say I suspect I will have a fight on my hands. I have just recieved a call and have an appt with my Onc on Tuesday next week - so i will know better then what I am up against and to what extent.
I will let you know how I get on.
x
Good luck saffron seed. If my experience is anything to go by, they take a lot more notice if they realise you are reasonably well informed. And of course if you are not happy you can ask for a second opinion. I know Prof Stebbing at Charing Cross subscribes to the theory that early mets are potentially curable, so that might be a good place to go for a second opinion.
Regarding the actual treatment I had for the met - I was initially offered 5 sessions of rads and finished up having 20!
finty xx
Hi i was diagnosed with inflammatory breast cancer in august 2007. had chemo, masectomy and radiotherapy, was doing really well untill april this year , when severe pain to my right hip confirmed i had secondary bone cancer to the hips, lower and middle spine, and groin area. My oncology specialist put me on arimidex (was on tamoxifen before) and lucky for me was picked to take the tablet form of bondronate. I received a week of rads to the areas. things were ok but the pain did not go completly and a recent bone scan showed new hot spots to the pelvis, i am having 1 high dose of rads to the area on monday.Although it is painfull i still get out when feeling ok, i have a wonderfull family and friends, and try to keep positive…although sometimes find it really hard, and sometimes wonder why ! it keeps on coming back .best wishes to bc friends x
Hello Finty,
Just a thought. I was told by my original onc that my BC had spread to my “bones”. I haven’t asked where and am on the standard sort of treatment. However, I went to see my GP the other day to update him on things and he read off my computer records that the bone scan was inconclusive but spread had showed up in the CT scan. Does this mean they have caught it early? Does it mean anything at all?
Myfanwy
Hi Myfanwy
If I were you I would want to know exactly what they have seen on the scans, and would ask that the radiologist compares the bone scan and CT scan and ask to see the report. Obviously the fewer tumours the better. The treatment that I was referring to relates to a single or perhaps two small tumours. You may well be in that category. Lots of things that aren’t cancer can show up on a bone scan - arthritis, inflammation etc. If you do a little research on how the different types of scans work, it will help you in analysing the feedback you get. For instance CT scans show up solid masses once they are 2-3mm in size, but they can’t tell you what the masses are. Bone scans highlight areas of high cellular activity - so really the two scans need to be analysed together. Sometimes an MRI is needed to be sure.
Have you had chemo and surgery for the primary tumour? If not, I think this is something you should consider very seriously. However far the cancer has spread in the bones, it is very important to try and prevent spread to the organs. Although some people have great success with hormone therapy - others unfortunately don’t. Chemo could potentially kill any stray cells that have spread elsewhere, and may also reduce your bone tumour(s) - I think I read that chemo affects about 1/3 of bone tumours - it certainly reduced mine.
It’s very hard when you are first diagnosed to get to grips with all the information, but it may make a big difference to your prognosis. So I would very much encourage you to find out as much as possible to make sure you are getting the optimal treatment plan.
finty xx
Hi Myfanwy,
Just quick message - my bone scan was “inconclusive”, CT was also doubtful but MRI confirmed it. When I had my first “bone juice” I ached especially around where my bone met is. I also had flu-like syptoms for about a week. This only happened the first time. All my other infusions have been reaction free and I can go for my 3 weekly herceptin and pamidronate then go straight back to work. If this carries on, life will be bearable.
Welcome Saffronseed. Lots of info and support here. I have one bone met following mastectomy, chem and radio. Not letting it get to me yet!!
Has everyone got their Christmas tree up yet?
Stay warm, girls
Love Helen
i have read the article with interest. My onc is persuing a regime of high dose chemo, and looking to get rid of my primary tumour. He does this in view of my age and general fitness. He told me I had a 50% chance of chemo working, after hormone didnt, and fortunately so far I have been in the right bit of the 50%, so much so that he is giving me 2 more doses of FEC than he originally discussed. I have more than one site of mets, and am hoping that chemo has affected them as well as the primary site. I shall be on herceptin, zometa for as long as it is working. I am due to start weekly Tax also. He is throwing everything at this.
I have my trees up, and am looking forward to Christmas. The only downside is that I have to go to the chemo ward on bank Holiday Monday for my bloods 8-( as chemo is on next day. I am looking forward to the time when I don’t have to have chemo all the time. Moan moan lol.
x sarah