I was diagnosed with Cancer in March and although we knew it was Cancer its still a shock to be told it. I have had 2 chemo cycles now and have my 3rd at the end of the month. I would love to chat about the chemo side affects to anyone..
Glad you're feeling a little better, I do hope you don't have to have a lumbar puncture, that doesn't sound very nice at all . I also hope you continue to feel better as you have had an awful time of it and deserve a bit of normality.
Hi Hazel,
Mary still feeling good, just a little tired. We went out for a meal with some friends last night and had a really nice evening (first grown up portion she's had for a week!), then went to her Mum and Dad for lunch today. The Maffucci website idea was borne out of frustration as there is not a great deal of info out there, so my son said "ok Dad, let's create our own website, that's what I do". It seemed like a good idea at the time, but because this disease is so rare it was always going to take a long time to find enough participants to make it work. And of course we have a lot more to think about now.
I think Mary is coming to terms with the fact that we may not be able to go to Florida in June, even though I hadn't discussed it with her before, she was talking about her doubts with our friends last night. That has taken a lot of pressure off of me because I wasn't looking forward to having that conversation with her. We'll see what the onc has to say about it on Thursday.
Hope all is well. Just wanted to wish those having chemo tomorrow (Thursday) the best of luck. I can't remember who is having what and when now, perhaps we need a spreadsheet LOL.
Mary has clinic tomorrow and hopefully starts cycle 3 of her Gem/Carbo all being well. She has been feeling good for a week now so hopefully should be ok. I have a few questions for the Prof tomorrow so hoping the answers will be favourable - will let you know how it goes.
Good luck to Mary for today, hope all goes well. x
I'm beginning to lose track as well, but to everyone having anything done over the next few days, good luck, and to anyone recovering, I wish you better!
We spoke to Mary's consultant this morning and he would like to look at her blood test results for today before giving his blessing for her to travel to Orlando. So I need to call his specialist nurse midweek to get an answer.
However, he was happy with her today and previous blood tests are showing that things are under control, so he is optomistic and almost insistent that we should take the holiday. He is an advocate of patients having the best quality and quantity of life as possible, and he can review her requirements once she returns. He does not wants her to live her life around her treatment, but rather have treatment around her life.
He said that all being well he would stop her treatment 3 weeks before we go to eliminate the risk of her becoming neutropenic (as you know the major risk for people on chemo). With that in mind, he said we should exclude her pre-existing conditions from the insurance policy because the risk of her becoming acutely ill with something cancer related would be extremely low. He also said to look at some American insurers as one or two of his patients got much cheaper insurance doing that.
So we feel a lot more positive about things having spoken to him, but of course we still do not know for sure yet and will have to see how things work out.
He has also prescribed some additional anti-sickness tablets (Aprepitant), she has to take one an hour before chemo, then takes two tablets home - one on day 2, and one on day 3. She still has to take the Ondansetron etc, so will wait and see if it makes a difference on this cycle.
Mary has come to terms now with the fact that she is being treated for best quality and quantity of life, and knows that this may not be cured. That is a great weight off of my shoulders as I thought she may have trouble excepting that. It has made her more determined to enjoy her life and is quite upbeat about it at the moment.
We asked quite a few questions today, and left clinic feeling a lot better about things.
Hope all of you are doing ok, do update us when you feel well enough.
Some of the ladies here have had weekly chemo which seemed to work well for them, I'm surprised they haven't altered the chemo as NICE guidelines to recommend changing if you get less than 6 months 'remission', on the other hand I suppose it makes sense to try weekly while adding the Avastin and keep the others for use later. Some seem to follow the guidelines while others do there own thing!
Hi Jackie,
I remember you making this point about a year ago when Mary was on a Japanese regimen of Carbo/Taxol. This time around, her consultant has prescribed her GemCarbo but has split the dosage equally for week A and B. This confuses the hell out of the chemo nurses as they always think that she is on week A and needs to go to clinic. Yes, her consultant certainly seems to do his own thing and I asked him about this at clinic.
His rationelle was that many ladies cannot cope with the recommended dosage of chemo for week A, and so many times their neutrophils are too low to receive treatment on week B. By adjusting the dosage so that it is split over week A and B, you are less likely to miss a treatment session so that has to be a better schedule.
You cannot really argue with that, he is the top oncologist at the hospital and surely the NICE guidelines are eventually moulded by the best oncologists. We have faith in what he is doing, of course he cannot promise a cure but he will do his best to ensure her the best quality and quantity of life that he possibly can.
I also remember you saying that your onc plays it by the book and you felt like hitting him over the head with the book! LOL - well perhaps you should!
It's very quiet here at the moment, I hope everyone is ok.
Glad to hear all your news John it all sounds very positive. Fingers crossed the anti sickness will work this time, it will make the treatments so much more tolerable. I'm glad the aims of treatment have now 'out in the open', it makes life much easier as you can now discuss things without worrying about what you are saying.
I just wish that the NICE guidelines filtered through quicker esp as my cons it not of the free thinking variety!!! on the other hand I can't complain as what he's done has worked well for me so far.
My sister is visiting at the mo (which is nice) and unfortunately my hernia problem is making using the computer difficult, so if i'm not around much don't worry, i'm actually fine!
Mary is fine apart from being quite tired, she has been for her blood test this morning and has been cleared to have her chemo this afternoon - our daughter is with her today. Hope you are ok and your chemo goes well and the new tablets make a difference, always worth a try.
I have booked flights to the Algarve next Thursday and all being well we will be going out for 4 nights - Thursday to Monday. If she feels unwell we will just not go and lose the flight money, but it will be Mary's week off chemo so hopefully that is when she'll be at her best.
Hope everyone else is ok, it has gone very quiet again.
