Had my regular three weekly appointment at the Marsden today prior to my next cycle of xeloda.
I have been having quite a lot of bony pain which came on suddenly two days ago and, for the first time ever, I couldn’t get the pain under control. It was really scary - I was taking big pain killers that didnt do the trick. It’s horrible when the pain just goes on and on.
My last bone scan from a couple of weeks ago shows “significant progression” in the thoracic girdle - I think this means ribs,sternum and spine around the T vertebrae. Problem is, they don’t know whether the significant progression has occured recently or a while ago. It could have happened in the last few weeks - especially since I came of Zometa and switched to Ibandronate. Apparently it takes a few weeks for the ibandronate to reach a therapeutic level in the blood so I have been without cover for a few weeks. Or it could have happened a while ago.
The plan is to have some radiotherapy at the end of the week - but if the pain subsides I may put this off. I’m supposed to be going to France on Thursday for a few days and so I am playing things by ear.
Oh, and my tumour markers are slightly up again which could indicate that the xeloda is coming to the end of its usefulness - I’ve only been on it five months so am really hoping it is just a blip or a result of the bone stuff going on.
The pain tonight is better, so I am hoping it is just a flare. But boy this is such a frightening disease. I have images of my skeleton being eaten away and eventually crumbling to dust.
Ho hum…
Deirdre
Hi Deirdre
So sorry to hear about your increased bone pain, and your worries about Xeloda possibly failing as well. Just wanted to let you know that I’ve had several “flares” with my bone mets over the almost six years since I started on Bondronat – when it happened 18 months ago, it was confirmed as bone met progression, but every time I’ve had these episodes, the Bondronat has “kicked in” and got rid of the pain (and presumably got the mets under control) within a couple of weeks. Fingers crossed that it works for you as well. As for the Xeloda, fingers & toes crossed that this is also working for you, and that the increase in your markers is only a little blip. My onc doesn’t use tumour markers, but others on these boards have said that they can float up and down a bit without needing to panic. Hope you get away on your hols!
Marilyn x
Hi Deirdre…I’ve been on Xeloda for 15-16 months now…it took about 5 months to see a significant drop in my markers…at first they rose for a few months in a row…the treatment then really kicked in and my latest markers were 19…my fingers are crossed for you. x
Deirdre
What a bunch of s**t. So sorry to read this latest. Pain is so hard to deal with. I can’t write on bcpals as in hospice and seem to have forgotten password.
I know Marsden use tumour markers but they are not always accurate (according to mine I never have cancer) so really hope you hase more mileage from xeloda.
Jane x
Hi Deirdre
Sorry to hear about the pain. Hope Xeloda is still working for you and it is a blip. Hoping that everything does calm down so you get your trip to France. It definitely is a very frightening disease that holds us all to ransom.
Take care
Nicky x
Oh Deirdre,
I’m sorry you’ve been in such pain - I can imagine what a scary place it is when you can’t bring it under control. (Only similar experience that can help me imagine is v difficult birth with my son)
Really hoping things improve v soon and you can get away on hols - holidays are so important!
love Jacquie
Hi Deirdre,
I am a bit behind on threads so I hope by the time I write this you are getting the pain undercontrol.
(just re read your thread… hope your in France).
Although I have not had experience of rads for pain I beleive it can make a significant difference and I hope that you soon get zapped and comfortable.
Best wishes
Tess.X
Well, sadly I am not in France. And I haven’t had radiotherapy today.
Still, I had a good meeting with the radiotherapy team today. First of all, we had a discussion about the use of the word “significant”. I said that when used in conjunction with trial drugs it could actually mean “small but measurable”. But when I heard it in association with my bone spread I interpreted it as meaning “huge or loads of”.
The doctor thought this conversation very interesting and then was at pains to reassure me that my skeleton was not crumbling. He asked me about my pain control and agreed with me that I am still on the lower rungs of the pain control ladder. He also said that, as the new bisphosphonate drug that I am on starts to reach a therapeutic dose, I may be able to step off the pain control ladder again.
I was brave enough to ask him where the new spread was. The bad news is that I now have mets to my skull, lots of rib stuff going on and progression of the mets in my femur. It could have been worse I suppose.
The GOOD news is that he told me that it is VERY common to see a spike in tumour markers when somebody changes bisphosphonates - which I did not so long ago. Why didn’t they tell me that on Tuesday? Now I have a thicker straw to grasp at. Oh, and now that I am known to the team I can come in for radiotherapy whenever I need it, even at very short notice. But he is not recommending it now and thinks that pain killers are a better option.
Now I am taking Ibuprofen regularly (I had forgotten that I could take it again once I came off Avastin) I seem to have got this pain largely under control. Whereas on MOnday and Tuesday I would have scored it 10 on a pain control ometer, it is now probably a 3 or 4. I still don’t like it, but I can live with it.
So, a happier bunny tonight - I even did a dance to Poker Face with my little one. I love Lady GaGa.
Just thought I would share.
Deirdre
Hi Deirdre,
I am very sorry to hear that you didn’t make France.
I hope that this you get another chance to go.
I am pleased you had a good chat with your radiotherapy team it is so important for us to understand what is happening and a small bit of knowledge can at times be empowering as well as depressing.
It is good that you have the reasurance of going in for a zapping when and if you need it.
I never really know how I feel about terms like ‘significant’ and ‘remission’ and ‘common’…
I’m a bit like you…‘thats huge loads’!!!
I have at times been in pain and it has not only been got under control quickly but then drugs have not been needed anymore.
I think what happens with me is I don’t make a fuss soon enough and think that tomorrow it will be better.
I now get straight on to my GP and I have gone from not wanting to make a fuss thinking that it’s my turn for help.
Just out of interest why could you not have Ibuprofen with Avasin?
Keep dancing…
Best wishes
Tess.X
Hi Tess, Ibuprofen and other NSAIDS like voltarol are not recommended with Avastin because Avastin can thin the gut and some people have had perforations in their guts because they haven’t looked after then.
Long term use of Ibuprofen can also cause perforation of the gut,so the two together are not a good combination.
I had forgotten when I came off Avastin that it might be OK to have Ibuprofen, as long as I take it with food and take an acid inhibitor like Lanzaprazol to protect my gut.
Oh, how I hate having to have this knowledge. I wish I was expert on something like migration patterns of Peruvian butterflies instead.
Deirdre
Hi Deirdre
Really sorry you have new spread. Really sorry you didn’t make France. Europe is losing euros on the cancelled cancer breaks (I still have’t got to Amsterdam yet).
Yes lots of us going through lots of new stuff…maybe we could write a special edition of Vita.
Jane
Hi Deirdre,
I was sure I posted on this thread but I can’t see it! Maybe I replied on bcpals.
Really sorry you had to cancel France, I know how frustrating that is.
I am still hoping when my chemo kicks in Ian and I will be able to re plan our trip.
When I was on capecitabine tha first scan did not show any shrinkage it was after about 6months and then it showed really good shrinkage, so fingers crossed.
Love Debsxxx
Hi Dierdre,
I have not posted before, but reading your stuff makes me think the spread is similar to mine with ribs, femur and skull involved. The skull bit scares me, and I don’t seem to get much joy(!) from my onc-ever!!
Until I collapsed with a crumbled neck vertebra in Feb. I was in blissful ignorance of all of this–wish i still was. Have to say Patagionian butterflies are not my strongpoint, but my preferred subject would be the social habits of goldfinches-- which I also discovered since Feb. due to hubby installing birdfeeders ouside the window to keep me occupied (and out of ‘his’ shed).
I love the support we give and get here- though I am learning a whole new language.
Hope you get to france soon-- I love it there. My goal is to go with my daughter to see frinds in New York State in October–but must admit I get a bit pessimistic about it some days.
Cheers, caramelbunny
Hi Dierdre,
Thanks for the advice on the Ibuprofen.
How long were you on Avasin for?
I am hoping that your away at the moment France or chasing Peruvian butterfie as I don’t think I have seen a post from you recently.
Best wishes
Tess.X
Hi Deirdre
I’ve just seen that you’re up for due some IV chemo and just wanted you to know that I am thinking of you. Hope you’re as well as can be expected and that you’ve had some success with pain relief.
I took your advice and have been referred to my local hospice - the clinical nurse who came to visit was great. I haven’t gone to visit their new Day Centre yet (big gulp) but the prospect of a decent massage or reflexology will probably tempt me to cross that bridge on one of my weeks’ off.
love
xxx