Hi there Terry and everyone
In Oct 2008 I decided to stop all treatment .
The chemo was just too hard for me ( after 7 yrs of treatment )and the side effect were terrible plus my markers were going up even on the chemio
I am still fighting but in a different way and quite honestly havent felt so good for 6 yrs .
I prefer a couple of years like this than many years with all the side effects of chemio.
Its not an easy decision but I just knew that it was the right thing to for me and now .
Luv to you all jANE
I am so so sorry to read this, as Debs says it is so cruel- I hope your wife can be made more comfortable soon, that the two of you have care and support now.
I can't imagine what you're going through, but you're a great husband and it must be upsetting to see your wife in this position.
I hope that she is made comfy soon.
Oh gosh Terry I am so sorry don't know what I can say. This is such a cruel disease, so unfair. Thinking of you both.
Things have changed from bad to worse. The Acetis has grown so much in the last few days, they cannot drain it until her immune system is better, they hope that they can do this on Thursday.
She is so thin now and really cannot eat at all due to the fluid plus ulcers in her mouth which cause her to cry every time she eats.
I have been told not to expect more than three more weeks.
Terry - sorry to hear your wife is in hospital again. mouth ulcers are really horrible. I had some cocaine mouth wash which numbed the pain to allow me to eat and another time was given a different sort of numbing mouthwash which helped so that I could put food in my mouth. Hope the blood improves things for her.
Am away now till friday but will be thinking of you
sorry to hear your latest news, not sure if this will help but a mouthful of yugurt swished around mouth before trying to eat may help. It has the effect of coating the mouth so that hot chillies don't burn.
Good luck for tomorrow will be thinking of you both. Love and prayers.
Oh Terry, well you and your wife are certainly being put through the wringer. I hope that the hospital is one you have confidence in, and she will get the help and care she needs, and hopefully you will also get some rest. When I had trouble eating, they give me build up drinks, I wonder if that might be an option if eating is so painful.
Thinking of you both
We did not make it through to the Onc tomorrow without hospital emergency again. She was admitted last night and given 4 bags of blood in an attempt to get her aneamia under control plus her platlets were through the floor. The Ascites had got so much worse in 24 hours she could not breathe whilst walking at all.
Better now but they could not put a drain in as the risk of infection was too great so we are going to see the Onc in the morning with her to see when they can drain the fluid. Her mouth ulcers from the Taxol are making her cry every time she eats, she is getting so thin now.
Thanks Kate, I will let you know what the Onc says on Monday, I think next week will be busy with Hospitals etc getting the fluid down. She is quite jaundiced this morning.
Terry - we've been following each other's progress for a while now and really feel so sorry for you both. You seem such a devoted couple and this must be so hard for you both. Being breathless is awful and very scary without the added misery of nosebleeds and pain. I hope if they drain some of the fluid off it may help with the breathlessness for a while.
Like Jane said I do not see stopping treatment as 'giving in'. There comes a point when I believe we have to make the choice of contining with treatment or whethr to stop and the quality of life either decision makes. I'm for quality over quantity and know when the quality of my life reaches a certain point I will want to die. This is a highly personal and provocative decision that only that individual and their very close loved ones can reach.
I know little about avastin apart from that it does cause bleeding problems as does taxotere so the 2 together must be very bad for causing nosebleeds.so I suppose the decision needs to be made whether this regime is helping or worsening your wife's condition and if there are other options if that is what you want.
I don't know anything about the Spanish health system but it seems to be superior to the UK so I hope there are the equivalent of palliative care specialists who you can discuss your wife's symptoms and help you decide what is best to do about continuing treatment and life expectancy either way. Sorry - that sounds so harsh and it was meant with the best intention.
I can't think of anything else to say except that I wish you well in your decision making and it will be very hard to ask those questions and to hear the answers. Terry, you have been a wonderful support to me and I feel quite useless at being able to offer you words of wisdom at this time. As I said earlier, your love for each other has been so lovely to read about and I am very sad that your wife is obviously suffering so much now and you must be too in a different way. I really hope when you see the onc on monday that you can get some answers and your wife can get some relief from her symptoms.
Thinking of you
Thank you ladies.
I picked up my wifes latest TAC scan tonight along with the notes. I am not sure about the UK but here we can see the notes. Her Liver and lung mets are OK, ( relative to Oct 2008) showing not too much growth, but now she has a very large amount of fluid around her abdomen, whcich i believe to be Ascites, from the Spanish translation.
We have to see the Onc on Monday so I suppose they will arrange to drain it. It just seems to be happening very quickly now.
I think the previous posters have probably offered all of the wisdom that I could offer on this subject, and it is quite clear that your wife's condition is a deal worse than mine has been. All I can say is that when I was on taxol, I thought on quite a few occasions, especially when hospitalised or having to call dr's out in the night, that I was dying. Initially I was also confined to a wheelchair, having had a spinal operation, and we were not sure how significant my recovery would be. I felt my life would be pretty pointless then, as I had always been an active person. I suppose all I am saying is that sometimes it's not the cancer that causes one to feel so onewell, but the chemical cosh. It may be worth while, asking what other treatments are available, or if a break from treatments is possible.
We've all known people here who have dies quickly and unexpectedly, and we have also known those who continue to rally when the odds seem so highly stacked against them.
Whatever happens here, I'm sure the health professionals could have some worthwhile input, but ultimately this can only be information and guidance, the decision and rightly so, remains with your wife It's your job to interpret whether she really means this, or is profoundly fed up with the 'now'. I found that it is in the darkest days that the most honest discussions takes place, but there were also times, when I did not want my husband to give up on me, I wanted him to carry me through. Please remember I was not nearly so ill as your wife. I suppose I've always believed that someone knows when their time has come and I think you'll know to.
This is a terrible situation for both of you, and my thoughts are with you
Hi Terry, I think you live in Spain? If you have the equivalent of Mac nurses there I hope you can both get some practical advice from them. And I hope you are able to get plenty of help and support so your wife can have all the possibilities of care and treatment made available to her..and you. Thinking of you both..xx
Hi Terry and Mrs T,
just done along post and lost it. I have just got back from having taxol and avastin myself so I really do know what you are both going through. When I had my chemo break and was just on pamidronate and avastin every 3 weeks I did not have as many unpleasant side effects as soon as I went back on taxol the morning choking and nose bleeds started again. I find taxol a very hard chemo and moan constanstly about how I would love to feel normal again whatever normal was.
I agree with alot of Jane's post in actual fact most of her post, this is such a cruel disease and the treatments ugly barbaric.
My dad is still living in Spain my mum died in 2003 of secondary lung cancer the service from the medical team was second to none when it came to her final couple of months it was so much better than ours the hospice care came to her and they could not do enough to help us and make things easier for us. The decision to stop treatment is one that we will all have to make and I think I will know when I am ready, as I am sure Sue? will. It is no cowards way out and takes extreme bravery.
Sorry this post may not be of any use to you both and may not help, I would dearly love to help!
Stay strong and if I can do anything please let me know.
Your post is so heartbreaking. I suffered terribly from bleeding while on Taxol, so much so that even after having an operation on my nose I still bled. I could cope with the chemo and all that it brings but the bleeding caused anaemia, dizzy spells and an awful lot of embarrassment from impromptu blood over my face and clothes...it sounds like nothing but it's a constant nuisance.
I use a sinus rinse everyday now to try and clean my nose and keep it moist. ok it doesn't stop the bleeding but it cleans the nose and stops clots building up in the nose. It could be worth a try before giving up, as that's just such a difficult decision. As funnyface says though, maybe stopping the Avastin may stop some of the problems but i don't know how long it would take to stop the bleeding.
I think Jane summoned it all up very well - life is as much about Quality as Quantity. She will need to think through all her options and there are some very supportive macMillan nurses and hospice nurses. I hope you get all the support you need. Please send my regards to your wife and I hope the coming weeks are more comfortable - whether thats because she stops or just alters her treatment options
Terry J, I don't know if this will help any, but I do know Avastin will cause the nose bleeds and more than likely the gum bleeding too. Maybe just stopping the Avastin would give her a boost in how she feels. The Avastin also caused my legs and arms to hurt. Just a thought!! Funnyface
I am so very sorry to read that your wife is so ill.
My health is far far better than your wife's but the question you ask is one I think about a good deal.
First of all I don't think that stopping tretament is 'giving in' because I don't see coping with secondary cnacer as a battle to be fought with winners and losers.
Has your wife got a MacMillan or hospice nurse? Now is the time for her to talk about the implicatios of stopping tretament or carrying on. Your wife's goal now is probably to have as much quality time as she can...although 'quality' may still be very poor. Hospices promise to make our deaths as symptoim free and painless as possible...now is the time perhaps for your wife to talk about how that might be for her.
Talk together also to your wife's consultants about how long her life might be, with or without treatment...you may in fact find very little difference..and your aim should I think be about whether she can be more comfortable with or without the treatment.
Sometimes I think hope has to be reframed..hope is not just hoping for cure, but hoping for comfortableness, for a peaceful ending, for the best that can happen in dire circumstances.
And I do think that saying no to treatment takes a very special and personal courage...your wife sounds as though she may be approaching the time when she wants to say 'enough'.
very best wishes to you
My wife is thinking of stopping all treament now. Her QOL now is virtually nil as she is on weekly taxol and fortnightly Avastin.
She can hardly walk due to pain n her left leg, she is very out of breath at any movement and she is bleeding all the time from her nose and gums.
We are sure it is the Taxol and Avastin that are causing these side effects, she really managed Taxotere and Xeloda well but these two are really bad.
Is anyone else near this point, or is there anyone who can give advise or some sort of hope ?