Just been to see my onc today and he is suggesting weekly taxol. Has anybody else had this. If so what are the side effects like compared to the normal three week regime. Are you more or less likely to be prone to infections etc. I have had taxol before with and without carboplatin on the three week regime and coped relatively okay but did get nerve pain with the taxol.
Any insight will be helpful.
Thanks
Sue x
Hi Sue,
I had weekly taxol , it started in May 4 years ago and I had it through to the Sept. Heavens it is so far back I really can't remember side effects.
I just feel you are prone to infections with whatever chemo you are on as it all destroys good and bad cells. I always carry a face mask in my bag so if anyone is around coughing and spluttering on it goes. I also always use the antibacterial hand wash, I even put it on the steering wheel of the car as that can harbour so many germs.
I never put my handbag down on the floor and certainly never put it down on the washbasin area of a public toilet, I really am quite manic about picking up bugs. I actually have never been fitter i.e. not catching bugs, than I have ever been, so maybe the attention to those things plus my daily Echinecea and multi vitamins also help.
Good luck with the new treatment.
Love Anna xx
Thanks Anna, I know what you mean I also get super paranoid about infections when on chemo. I've not tried Echinacea, what is it? Anything that will help I'm willing to try.
I've read some of your story while looking through questions and blogs and I must say that you are an amazing woman and an inspiration.
I hope that one of these days your oncology team will find the right treatment for you to enable you to have a good break away from treatment and give you a well deserved rest.
Keep up the good fight
Sue x
Hi Sue
Had 18 weeks ofd weekly taxol finished in Dec last year. Side effects were fine . No nausea, constipation well controlled with Movicol for a couple of days. Hair loss reduced by using the cold cap see Raza's question today. I did get tired but not as badly as on 3 weekly and this was my 5th lot of chemo in 4 years. My blood counts and immune system were fine throughout. I led a normal life but did not rtake unecessary risks. The pins and needles in my fingers and feet did get worse than it had been previously but not bad enough for the onc. to reduce the dose or stop it. The worst part for me was really physcological. Going every week made me feel that I could never get away from chemo. But the uyp side of that qas that my ca 125 came down from 4000 to 380. Don't know what it is now but am feeling certainly no worse than when I had my post chemo scan end of Dec. Truth day in a couple of weeks.!!!!
Go for it treatment is better than with 3weekly and Docs think more effective
Good luck
Love Suex
Hi Sue, thanks for the info. The nerve damage is one of my biggest worries as I had to be on tablets from my first cycle of taxol last time due to the tingling and pain, that as well as the vain damage. I am pushing for a port or power port but will have to go to another hospital to have one as they don't do it where I live.
Hair loss is not really an issue, it is only just thickening from last years meds (perversely it wasn't the chemo but one of the other meds I had to control symptoms that caused the thinning)! So I think I would rather lose it totally than have it thin again and go through the discomfort of a cold cap.
Can you remember how the cycle went? Where particular days worse ie day 2 more tired etc. how about the week off was that spent exhausted or with energy? One of the reasons I ask is that I live by myself and wondered what days if any I will need help - typically the first 3-4 days have been worse on the three week regime and last time I was an in patient for those days to help, not sure if I will need or want in patient treatment again it depends on the effects.
I'm glad you are feeling well and wish you luck with your next appointment, we'll keep the BBFC kicked out of the park.
Warmest wishes
Sue x
Hi Sue,
Ah yes I now remember my hair thinning, it is all coming back. Thanks for the complement you gave me. My son phoned the other night and had us both blubbing when he said 'Mum I love you, you are an inspiration to us all'. This was from a 36 year old, 2 metre tall guy, one big softie bless his heart.
Echinecea is a product found in health food shops and chemists that actually helps boost the immune system. I started taking it on the advice of my GP as I had my spleen removed when I had my debaulking and of course the spleen helps the immune system and you are more susceptible to infections without it.
A lot of people start taking it if they feel they have a cold coming on. I know so many people say theses things are rubbish but this particular plant has been proved to be effective. I take double the amount, you should take one a day, I take two a day because of having cancer. One should always check with their Onc first before taking anything, but I took it all the way through taxol and take it through all my treatment.
The other thing I am very into and again this was recommended to me by a friend who had liver cancer, she was told to take Tincture of Milk Thistle. It is a liver protector and protects the liver against the side effects of the chemo. I also take a good multi vitamin and Spiralina, yep I am a real junkie lol
Love Anna xx
Cheers Anna, I'll check first and if allowed will definitely get some.
The more drugs the better, only time we will be allowed to say this lol
Love Sue x
Hi Sue,
Just a quick heads up to you, that before I started my current regime of caeylx I did go for a second opinion at Barts in London and saw Professor Iain McNeish one of the top bods for Ovarian Cancer. He condoned the use of caeylx as it is in short supply at the moment and it could have been my only chance to try it. Anyway, he said if caeylx had been available for me to try later that he would have advised weekly taxol now as he believes it just as effective with the added bonus it kicks in quicker than caeylx. He also is running a SAPPROC trial (see cancer research site) which at least one other member of this group is on, where they add another trial drug. It is a phase 2 trial and finishes recruiting the end of this month. It is only available at selected hospitals (see the cancer research site for info). He is however, hoping to quickly roll out phase 3 and to more hospitals. A quick call or two - cancer research or to the Prof's secretary (available on the web) and I am sure you could find out the plans if you are interested and then get your onc to arrange. Just another option.
Trial info:-
cancerhelp.cancerresearchuk...
Love Lizzie
X
Hi Lizzie
Thanks for the info, I will ring his office on Monday to see if they can tell me where I might be able to get onto the next phase. Mind you I won't hold my breath as I live in Carlisle and nothing ever happens here. I thought about asking for a referral to Christies in Manchester but am worried that I wouldn't be able to cope with all the travelling (2.5 hours) especially as I live alone and my family all live across the country so chemo is hard enough as it is. Anyway I digress, like I say thanks for the info, very interesting and worth looking into.
Good luck with the Caelyx
Sue x
Hi Sue,
I know Prof McNeish is really keen on getting a good nationwide roll out for the next phase, and one of his missions is to get more places outside London involved in trials. If we had given up on Caeylx and I wasn't convinced about the other options, I would have had to commute to Oxford which is about 2hrs. Not something I really wanted either. The trouble is, timing is everything. If it is June before they get the next phase up and running, it may be too much of a delay for you, but worth investigating. Thanks for the good luck on Caelyx. It looks like it may have just kicked in. My ascites is much reduced, I am feeling good, and I got a 250 point drop in CA125 (but not sure if just a blip yet).
Love Lizzie
X
Sue,
I have been on 6 different chemos in the past 8 yrs for late stage ovarian cancer . Now,I am on weekly taxol-- So far, after many months, all is well, and ca125 coming down and steady. I will be on this regimen the rest of my life. The side effects are minimal, except for hair and eyelashes, etc. I was getting really tired day 4-5, but then Dr. put me on Ritalin, the same one for kids with adhd, with chemo it really helps with energy. One in morning, one at noon, and I can go all day. Feeling good and actually think I can go another 5-8 years on this program. It really keeps things at bay---every 7 days is more effective that every 21. Also, am taking an estrogen inhibitor pill each night. I'm doing well. Talk to your Dr. about these things.
Hi Sue
So nice to read your email. I have primary peritoneal cancer which is the same as Ovarian only it starts in the peritoneal instead of just moving there so to speak. I have had it for 21/2 years. I started on 3 weekly taxol and carboplatin which played havoc with my immune system so had lots of problems although it did have a good responce initially. I then had surgery which was successful but cancer came back after 4 months (really bad news) I then had 6 cycles of carbo and gemcitabin which did not really work although it helped but March last year cancer showiing signs of growing agAIN. I was given up by the senior consultant at the Marsden but my local oncologist thought I ought to be offered more as I was still well and referred me to an amazing professor at The Priory in Birmingham. I was give Myocet (the alternative to the then unavailable caylex (not sure of spelling) plus Avastin a combination he has never tried before. Well it worked and I finished by eight courses in Novemeber and continued on Avastin alone for 5 months. as expected it has started up again and he is going to put me on weekly taxol and carboplatin so I was really pleased to rread your letter telling me of the success this treatment has had on you. I have been feeling really depressed as I thought maybe after the treatment I have had before that maybe my time was up and did not realise that others had similar experiences of recurrence. Your letter has given me hope againb, just hope it works foir me and that I can look to the future liijke you.
chezgravel
Weekly doses of taxol
Weekly taxol 
Weekly taxol
Weekly taxol
