Started to write a post and lost it in the middle - it may appear but I just need a bit of support for fellow fighters as I have virtually given up.
Avastin stopped working my CA125 has soared and the oncologist is muttering about palliative car. I was having to travel 90 minutes for treatment and was worn out anyway. At least she is now transferring me nearer to home so I will get another opinion. My daughters don't wont me to just give up but I feel I would be better not here than feeling as I do.
I was put on Caelyx as a trial and my 1st treatment was delayed and then the second one was delayed by another two weeks because I had an infection leading to sepsis in my PICC line. I fought through that only to be told that my CA125 was going up all the time so they were taking me off Caelyx and really could not suggest anything else. I felt that Caelyx had not had a good enough go really and asked if there was anything else. They have now suggested weekly Taxol but did not hold out much hope of any improvement.
I have been referred to a really local oncologist who may have other ideas but need some support /info from you other good people , Has any one been told that there is NOTHING else they can try. Has any one been on weekly Taxol. ? I suffer terribly with constipation and wondered if any of you had any ideas on that as well. I usually overdose with laxatives and end up with diarrhoea. So I am desperate for some advice from you lovely ladies in every respect. Thank you so very much from a very weepy pain-ridden Irene xxx
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steffi123
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Hi Irene, It is 2 30am here in Australia and I can't sleep so I log on and your post was the first one I read, I'm so sorry to hear you are so down, please don't give up I know you have been through a lot but is ma y be a good thing that you are going to a new oncologist, near home and a second opinion could be just the thing. I ha Caelyx with some success I went the whole 6 months and found that it did not start to bring it down till 5th and 6th, it is a slow treatment it came down 10 points after I stop treatment.
I took a break at my choice as I have been on chemo for most of the 2 1/2 years since I was diagnosed my 125 started to go from 75 to 1300 in no time so now I'm on my 4th line which is carbonplin and caelyx, Once you meet your new team I sure that a treatment plain will be put in place for you please keep up the fight,,Cheers and best wishes Lorraine xx💙💙
I guess that the fact that you're being transferred to another hospital and you can get a second opinion has to be a positive. Your biggest issue right now has to be around pain management. And that's where the palliative team come in. Please don't think that this is a negative word - I've heard lots of people here say how positive this step can be.
I can relate to what you're saying regarding not having given the Caelyx a "good enough go". My treatment was stopped half way through as my CA125 readings were continuing to climb. Since then, it's actually dropped a little and today I asked my oncologist if it was worth reconsidering, and why had the level dropped? She admitted she didn't know.
I think that's what so difficult with this disease. There are so many unknowns, and even the professionals don't have the answer...
Thinking of you and hoping that things get better for you soon
Go for a 2nd, 3rd, 4th, and 5th opinion I DON'T believe for a moment its the end. It's a long road and a big fight, you've been dealt a hard blow because of an idiot who has finished ticking his or her boxes. Can you be referred to the Christie or Marsden? As I hear they have the best oncology department in the U.K. failing that there are the other options such as cannabinoid I can't promise it'll work however it's worth a try if they're deciding to put you over to palliative care.
You as well as all the other ladies on this site are individuals so screw the numbers!
My special person's surgeon was shocked to see her still here in September 2015 when she got told she was having surgery as she got told in the March of 2015 she would be dead in 6 months with chemo she is still here 2 years 2 months later (annoys the c**p out of us at times 😂) but wouldn't have it any other way.
Hi Callmemum, you really do not mice your words I like it. I wanted to answer this one but I was so taken back I really didn't know what to suggest. I am shocked how quickly some of these so called cancer doctors want to give up. Thank God we are not dogs or they would have us put down. Thanks for making me laugh I needed that. Take care Cindyxx
I think go for a second opinion, it is better to have a hospital nearer home and you probably wont feel so worn out. My reaction is have a think, get a second opinion and take it from there.
The other ladies will be more qualified than me for ideas about more treatment, but I wanted to recommend a powder called Intestinal Tone which is a mix of pysillium husks, prebiotics, probiotics i.e. Friendly bacteria and digestive enzymes which you mix with water and take before meals. It will help your tummy and constipation problems and is available at Total Wellbeing Group online. Good luck and I really hope you can get a good second opinion and a treatment plan soon. Sending you love, Sophia xx
I've had weekly Taxol, didn't have too much in the way of side effects, & didn't lose all my hair, it just thinned. I also tried Caelyx, & it was stopped after 3 because my tumours were still growing. Di
Steffi123, just a quick thought, have you tried docusate sodium for the constipation? It was the only thing that worked for me, and you can buy it over the counter. 2 tablets twice a day, morning and night, and I was told if that doesn't work, then 2 more, mid-day, but ask your Doctors for advice, as I can only say what was recommended and worked for me.
Secondly I concur with the other ladies, get a second opinion, and above all, don't lose hope.
Wishing you well
Sarah xxx
PS I am ALWAYS losing posts on this site, especially when typing from my mobile. It is incredibly annoying x
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