you give me hope - that my onc does not give me.
gill
Hi to all of you,
just got back from a long weekend in Manchester eldest grand daughter celebrated her 20th she has a baby of 4 months flippin eck how she has grown! My youngest drove from Newcastle so we were all together for a weekend that we did not think I would still be around for. So I am truly grateful! I flew there and back alone so my energy levels have improved greatly.
Kay congratulations on your brilliant news it never fails to amaze me how we all react so differently to the drugs we are given.
This is why I feel so strongly that even if our onc feels we may not benefit from some drugs we should be allowed to give them a go.
Love Debsxxx
I agree Debs - different drugs seem to work in different ways for different people (look at the range of side effects as well as the outcomes!) and I don’t always think all the oncs take that into account.
Sounds as if you are doing really well - family events can be so very special and it is lovely to feel that you have a bit more energy so that you can really enjoy them.
Was thinking of you (and some others), Cathy, when I made my last post - and hoped that it might give you some hope. I remember how scared I was at the speed things had progressed and how difficult it was to believe that things could be turned around. I also do know what you mean about the taxol. The weekly dose is much easier to tolerate I think but you do seem to be at the hospital so much particularly as the taxol and avastin takes such a time. At least I went on a Friday which gave me a run of days at work and then the hospital and then the weekend. Really hope it does settle down for you.
Really glad you had a good weekend away Jacquie - sounds as if you had a great time. Sounds like just what you needed to give you a bit of a boost.
Hope you too are feeling a bit more cheerful, Gill.
Love to all
Kay
I am bumping this up - will post on it,
Hello All
just bringing our old thread back up again.
had a brilliant day on Saturday with a lovely walk around richmond Park - 3 miles - which I managed reasonably well, although when we got to the end I was pretty relieved as beginning to feel very tired but mostly sore. It was for Marie Curie and although I suspect I was the only person on the walk personally dealing with them I could be wrong, most of them seemed horribly fit 20 year olds. Fund raising has now exceeded my modest target , so this was a good thing to do. The nice thing was that my son really loved it and was skipping around the whole time humming to himself quietly - it was such a beautiful weekend, and we had a lovely luch out on sunday.
Hope you are all doing OK, I am on my week off from Taxol and feel so much better today it really shows you what a general malaise weekly taxol puts you in. i am more used to the model of being knocked flat and then building yourself back up again…just hope this is working, some days I think yes it must be and then others I am not so sure.
Tracy if you are reading - let us know how you are.
love to All
Cathy
Cathy
So glad you enjoyed your walk on Saturday what lovely weather. Glad your feeling better it really knocks you back for a while. I’m off to the hospital tomorrow not sure if I will get my bone scan results dreading them.
Beli x
Well what a waste of time my reg said my results are inconclusive and I have to wait for ct scan which I am having tomorrow surely the bone scan tells you whether there has been any further spread in the bones, I tried grilling her and told her I was very confused and she told me she didn’t want to go into it until I have my ct results. The Mac nurse tried to then help with the explaination but really is just not satisfactory.
Lets hope I get someone else next time who my be better clued up.
Beli x
Oh Beli GRR.
maybe the registrar was in over his head.
When I went to get my last CT results my onc said my bones were more scarred,(lytic?) but they had started out as little wholes…so if they had started out as scars, more scarred would be bad, but as they started out as whole scards were actually improvement as meant new bone was growing,
Anyway he said he was thrown for a minute as its not that usual a result. I think he is right because my bone pain if anything is stable or better, but i do get episodes in my lower back which apparently are nothing to do with cancer…I hope that you can get some straight answers soon as I can just imagine the tension of going to the meeting and then finding out there was no clear result,…its enough to make anyone cry.
When do you get your CT result?
love
cathy
Hi
Cathy glad your walk went well hope taxol is working for you, I am not looking forward to every week but needs must I suppose
Beli fingers crossed for your scan,
Best wishes Kathryn
Sorry to hear that Beli - what frustration! It’s unbelievable. Hope your CT results are in soon
love Jx
Hi to everyone,
Beli why not ring onc sec and ask for onc to ring with scan results. That is if you dont mind news over the phone. I seem to have mine well trained he always rings with results. I know it is a bit cheeky but it is the way I like to deal with it.
Back to Manchester for youngest grand daughters 14th this weekend the weather here is sunny and dry, no doubt it will be …ing down in Manchester!
Love Debsxxx
I had some good news today - my onc who neveer says ‘good’ said ‘good’ several times today. have had 2 Docetaxel got to have 1 more then scan to see Liver and then 3 more maybe.
My Liver is working, my cough has gone and a free floating cluster has gone. I am happy with that today.
Good luck all.
gill
Gill - pleased for you. It’s so nice to hear good news.
Just joined you liver ladies in July so not read all of thread yet - bit lengthy for the few mins I’ve got before kids home from school.
Hopefully, it’s been good news week. My liver function tests are now normal and the liver pain has gone and my weight is stable and feel I am digesting my food. Also my blood tests all round were better and my skin mets and underarm lump and I feel so much better all round.
Hope others are also faring well
Kate
Hi Gill,
Just had a little nose on this thread!!!
I have no idea who you are but I just wanted say what fantastic news.
Bikinggirl
p.s
Kate, thats fantastic news too…
Two lots of good news! That’s fantastic, Kate and Gill.
Hope everyone else is doing ok too - have you had your mammogram through yet Dawn? And how are you doing Tracy?
Love to all Kay x
Gill
I am really pleased for you - I remember you have written a couple of times about your onc being a bit grim, thats really great, it gives you the strength to carry on .
Kate thats great as well, in fact its really amazing actually,
.i hope we can all kick in with some good news. I think the jury is still out for my taxol, but they are pretty quick to tell me when it is bad news so I still have my fingers crossed.
love
cathy
Brilliant news ladies
Caroline
Hi All
Good news Kate and Gill.
Had my scan on Thursday good news and bad news had a phone call saying no further cancer spread to organs yippee but have blood clots in the lungs so had to go immediately to the hospital for treatment, I now have to inject myself daily with a blood thinning agent. Didn’t even bother to ask about the bone scan again I will wait until my appointment on 22.
Enjoy the weather I know its daft but it lovely looking outside when the weather is lovely.
Beli x
Beli
that is good news and bad news - the scan is great but blood clots - eek. Did you have any symptoms that you were aware of ? I am sorry, that must have been a bit of a nasty surprise…I have injected myself with blood thinner (heparin) when I went to the USA for 6 days, I know that isn’t the same, but it really was OK, I got to be quite expert on doing it properly which was pretty strange for someone who doesn’t have a steady hand.
I hope you can get some news on the bone scan, I completely see why you left it to the 22nd, I think they probably would have told you if there was any news that you really had to know.
love
cathy
Hi Beli
Definitely a mix of news. Really glad to hear that the xeloda is controlling the cancer but the blood clots sound scary. Do they know what has caused them?
The weather was fantastic today wasn’t it? Hoping tomorrow is the same so I can potter in the garden.
Take care.
Kay xx