Hello to all - I’ve not been very active on the forum over the last few months (although I read posts to see how everyone is from time to time).
I finished 18 weeks of taxol at the start of October with a rising CA125. The scan I had straight after showed some progression in my primary tumour and a new growth on my liver which had grown in 3 months. I asked to be referred to the Royal Marsden for a trial, but my consultant felt I should see someone at Hammersmith which I did. He agreed with all my treatment so far but didn’t have any trials. He recommended I should be seen by the Marsden as they had a suitable trial. Unfortunately after an appointment, a scan and a phone call, it has been decided that I’m not eligible for the trial. One of the trial drugs was Avastin which I had in 2017, but as my tumour is troubling my bowel, I am not allowed to have it again. So I have to see my team on 31st and will be starting chemo (probably Carboplatin and gemcitabine - any advice welcome) in the New Year. My CA125 is now 908, but it’s never been very low - 1800 before I started taxol!
In the mean time, I know it is all kicking off again as I’m constipated and have quite a lot of lower abdominal pain - I’m hoping nothing untoward happens before I can get back on treatment! I have huge support from my family and friends so am hoping to have a fun Christmas with them.
I wish all of you the best Christmas you can have and a happy new year.
With love, Ali x
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Alifit
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Alifit I wish you Merry Christmas and Happy New Year ,have fun with family and friends.I have my family and friends support to.We gonna beat the cancer. Whit love from Chicago.Emma 🎄🥂😘
Sorry you're back on the Merry-go-round already Ali. I had carbo/gem with good results a few years ago but day 8 got knocked on the head after 4 cycles. I sympathise with what your going through, I finished weekly Taxol with Cediranib in August and I'm back on carbo caelyx already 🙄. Xx
You really have had a challenging time haven’t you. Thanks for your Carbo/gem story - all these snippets help to paint a picture of what to expect in the next few months.
Have a great Christmas, with love, Ali x
Hello Ali, I don't have any personal experience of Carboplatin and gemcitabine but wanted to wish you luck with it and hope works for you. Have a good Christmas and New Year and use the break in treatment to recharge the batteries for your next phase. Take care x
Thank you Lyn - I’m finding positivity a bit hard, but once the seasonal stuff kicks off I’ll forget about it. Thank you so much for your good wishes. I hope all is well with you and that you have a great Christmas.
First of all, may I wish you a very happy Christmas with your family and friends. I hope you will have lots of fun and make many happy memories which will give you the strength to start the new line of chemo in the new year. I’ve just finished a line of cisplatin and gem which in many ways, I found less harsh on a day to day basis than cisplatin and taxol or Caelyx. However, I ended up in hospital on several occasions with infections and blood problems, mainly because my bone marrow has been damaged by all the chemo. I’m looking forward to having some quality time with family, especially my young grandchildren and catching up with friends in the new year. I will write an update post in the coming days.
If your reaction is similar to mine, I could imagine you being able to continue the varied social life I recall from previous posts, as you seem to have had more energy, less exhaustion during various treatments than me. My fingers are crossed for you.
Hi Jo, thank you for your reply. I’m fully expecting to have to hunker down during this chemo - my bloods have always been a bit wobbly, but as you say, our bone marrow has taken such a hit and for me, respite between chemo regimes is getting shorter and shorter. I am much more tired than I have been in the past, but have learned how to manage it - not trying to go all day like the Duracell Bunny is one thing. Tom knows now when to sit me down and fill me up with coffee and cakes so I have a new lease of life.
With all my love and best wishes for a very happy Christmas and new year - enjoy those grandchildren and, as you say, make happy memories to bolster your strength in the new year, Ali x
I have experience with carbo/gemcitabine. That was my second line of treatment when I recurred and found it a lot easier to tolerate relative to the carbo/taxol I had for first line. One of the keys is to talk about quality of life with your doctor. For me, constipation was a big problem during my first line treatment even though I took colace, senokot. So second time around we were much more aggressive about staying ahead of the constipation whenever I took anti-nauseous meds. When I just had gemcitabin constipation wasn’t the issue. Quite the opposite. So I had to learn to balance all the bowel issues. But I was able to work all through my second line treatment.
Thank you Gwen - my bowels are always a problem on chemo - this will be my fourth line. I have Laxido and sodium docusate in varying quantities to help.
Above and beyond using the stool softeners, I found that Miralax and 4 prunes briefly heated in the microwave also helped. Yes, 4. When I went to 5 I found myself having to run to the bathroom. LOL There is something about heating up prunes or prune juice that seems to make them even more effective.
There is a tea that some women use called Smooth Move. You can find it in the grocery store with the herbal teas. Personally I didn't like the taste of it so gave my box of it away. But other women swear it works for them.
Thank you Gwen. I shall certainly try the warmed prunes - who knows why they work better warm! I’m not sure about Smooth Move - the name puts me off a bit!! My CNS has suggested I should take codeine as I’m getting quite a lot of abdominal pain but I’m not sure I’m ready for further constipation - I’ll try ibuprofen first.
Thank you Laura, it seems that prunes are the way forward! The Marsden were really supportive when they told me this trial was not for me - they’ve got some phase one trials coming up so I’ll keep in touch with them in the hope that one will be suitable for me.
I’ve chased my team - I’m being seen on 31st; chemo will start in the new year. I’m probably going to need some kind of indwelling line this time - that will take a while to organise too
Thanks for the update, always think of my ‘Swan’ pals & would love to see everyone again..
I don’t know about Gem but other ladies have been advising you which is good.
I think ‘bowel issues’ are some of the worst things we have to deal with.
Before I started Carbo/Caelyx in November, I had a LOT of bowel issues...mainly diarrhoea on & off but the worst thing was urgency! I was referred to a gastroenterologist & had a sigmoidoscopy: nothing abnormal found. The strangest thing is.....the second week into my chemo - the symptoms began to improve & my bowels are SO much better!
So the chemo must be killing the cells that must have been irritating my bowels!! I’m so pleased! (Who else but a fellow OC sufferer would understand Ali!!).
I wish for you first of all a fabulous Christmas & then great success with your new chemo regime.
Hi Ali- as I replied to Linda I went by the Swann just an hour ago. Thought of you all.
On another note does treatment mean no skiing after Xmas?
I have booked a weeks skiing. Not sure if I will be able to ski as the knee strength not fully back. However, I will get my snow fix and my mate can do a few runs and I can meet for coffee and lunch.
Hi Fay, I too passed the Swan a few weeks ago and remembered that lovely afternoon.
Skiing was already in doubt due to the fact that part of the group are going to South Africa to welcome a new baby. Tom and I considered going in the last month, but I’ve been feeling ropey and we’ve been having a new bathroom fitted - 7 weeks in now - hopefully it will be done by the time I start chemo!
I’m so glad you can go skiing Fay - take it easy and enjoy the clear air, the sunshine and the pre, during and apres ski!!
Hi Linda- coincidence I went by the Swan an hour ago as I was visiting a friend who lives a few hundred yards away. I always think of everyone when I pass there. It was such a good meet.
I had Cisplatin / Gem with a trial drug and all was good until near the end when I became tired and needed a blood transfusion. I do remember loose bowels though.
It certainly wasn’t as hard to cope with as first line Carbo / Taxol but maybe Carbo is harder than Cisplatin. It’s a shame about the trial.
Have a great Christmas and I hope you can keep up with all your activities.
You already got great input. I became platinum refractory on Carbo Gem so they stopped. It was not the Gem so no worries for you about that. I am back on weekly taxol and just had my third infusion and so far, I can feel it is working. But with what you wrote, I now wonder if it will stop working at some point! My options are limited due to many treatments already but I am in the US and there are more trials if one if willing to travel. If I can get back to NED or stable I plan to go speak to some trial folks or second opinions.
Wishing you a Merry Christmas and hoping you can put your fears away to truly enjoy the holidays with loves ones. Happy New Year too. oxoxox Judy
Gosh Judy, don’t let my experiences worry you. I know lots of people have better success than I did with it. I worry that my options are running out, but if I can get on a trial I shall at least feel that my cancer has done some good.
Thank you so much for your good wishes, I hope you too have a great Christmas and New Year. With love, Ali x
Wishing you a great fun Christmas with your family & friends . I admire your determination in exploring all options and all the very best on your new regime in the New year . I haven’t had it - am on weekly Taxol. But struggling with weakness & fatigue.
I just want to remind you Mary, that if you are too weak, meaning that for more than three days a week, you cannot walk from one room to another, or climb a few stairs, your dosage might need to be reduced.
I suffered badly on weekly taxol at the be beginning of the DICE Trial. I could not support my own body weight, so could not stand or barely walk after 6 days in bed.
They lowered my dosage and my CA-125 continues to drop, but now I only need three days in bed! I get 3 good days each week and one iffy day. Speak k to your team.
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Here we go again, breast cancer link.
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Here we go again!
here we go again!!
