Hi Ladies, you were all so helpful on my previous post that I thought I would run this past you. Tomorrow I am planning to tell my oncogist that I have no plans to have a 4th chemo on 28th Dec to tide me over till op in mid Jan. My reasons why are some nerve damage to my left foot, I understand Pacitaxol causes this? I am worried it could get much worse and never recover as happened to a friend of mine who 5 plus years on still suffers with both her hands and feet. Also I started off pre chemo weighing 7st 12Ibs I am now down to 7st with hardly an ounce of fat. So I'm worried I just won't have enough weight/energy to pull me through the op? My husband thinks I need building up a bit first to be able to cope? I would be grateful for any input - thanks!
Oncologist Battle!: Hi Ladies, you were all so... - My Ovacome
Oncologist Battle!
I’d be more inclined to ask for a reduction in the drugs than no chemo at all - the benefits of chemo are cumulative along with the side effects although no one knows exactly the optimum number of cycles and I believe that chemo is not thought to be as effective with your subtype - tell your oncologist how you feel and they will be able to explain the risks and benefits to you - it may we’ll be that you still decide to say no more chemo but your surgical team may be able to do better job if you’ve had the usual number of cycles x
Usually chemo given before surgery is to shrink the tumor so it can be operable.talk about it to your dr before you make your final decision please.most important is to get this cancer out of your body!
Are you receiving Taxol on its own?
I'm taking Carboplatin as well as the Taxol
My oncologist dropped my taxol on cycle 5 and 6 due to nerve damage to both feet. You could continue with carbo only and still get good results. You could try some build-up type drinks, complain or similar. It is important that you are fighting fit as it is a big operation.
Maybe they need to re jig your dosage.You are very light and it should be down to a weight ratio. I was on the same drugs , but not before the op, after, for 6 months and have neuropathy in 2 toes, but that, I think is because my chemo was for a concentrated amount of time.
Speak to your team,voice your concerns, I’m sure they will put your mind at rest
Carole xx
If you have lost weight then ask for another prescription to be written, they order the chemo according to your weight and I also lost weight while on this regime. I was after surgery, Don't make any rash decisions, make yourself eat as much as you can small amounts every few hours and perhaps the protein shakes as well. They wouldn't operate if there was a chance of you being in danger.
Maybe ask about reducing the drugs I was on carbo/taxol and raised a similar issue just after treatment 4 I had such bad pain they offered to drop the taxol but I ended up going with it I struggled through somehow - it is awful though I also lost a lot of weight as I was so sick and didn't have much of an appetite I remember forcing myself to eat small amounts during the day, such as bananas for snacks or yop yogurt drinks, Philadelphia and crackers there was a lot of foods I couldn't tolerate to smell or look at. Especially after diagnosis and a hospital stay and chest drain I was a similar weight under 8 stone. Try to eat something with calories and good tasting fruit. I am on a different chemo cisplatin now and the dietitian advised pineapple is very good to open taste buds. I hope you get strong soon xxx
I to started to get peripheral neuropathy in my hands and feet after chemo 4 and on another patients advice have been having weekly acupuncture after chemo 6 it was really bad and I was worried about it being permanent but 3 weeks later still having weekly acupuncture it is significantly better and consultant says this means with continuing acupuncture treatment it should go
I was meant to have op after chemo 4 but too much disease and this week after 6 chemo told will not have op at all as still too much disease not the news I wanted. You can off course ask for a reduced chemo. Good luck.
I was also on carboplatin and paclitaxol
It's your body and it's your choice. I did the same thing for the same reasons and got offered a dose reduction for the next cycle; all well and good but I then had an allergic reaction to the platinum! That was the end for me. Remember: "The patient is always right."
Hi, I was diagnosed in December 2016. I lost a lot of weight and was told to put weight on. I ate anything and everything. Chocolate, nuts, peanut butter, forty sips( a protein drink) loads of bread, milky drinks etc.
They started my chemo anyway, yes,I have had problems with side effects!!
I was down for the op. but when they told me they could not remove all the cancer it was decided not to operate.
I had 6 lots pf carbo and pacil. 1 every 4 weeks. I then had avastin for 6 months but it stopped doing its job.
I had more chemo Jan to June 2018 but caelyx instead, which was easier. I am now on a parp inhibitor, niraparib, due to have scans on the 4th Jan to see how thats going.
In a way I am pleased not to have had the op. I havent had the after effects of it all especially the post op pain, lots on here seem to suffer from and I am leading a normal life.
I am always busy, being with my family, helping people with paper work, meeting friends, playing badminton twice a week and walking my dogs. I especially pack as many holidays in as I can. (off to Madeira on the 18th Jan. for 10 days)
I dont know if any of this helps but I live for today who knows whats round the corner but I am so grateful that I still feel OK and intend to keep that way as long as I can.
Best of luck with the decisions you have to make, I shall be reading your posts.
Take care and take control, it really helps to be back in control of youself.
Have a lovely Christmas, Anthea xxx
Hi. I had 17 chemo's, on carbo/taxol, 1 week both, 2 weeks taxol only, on frontline. On 1st recurrence, I had 13 chemo's only, cos of low immune system, 10 on a lower dose. Maybe I am lucky but I used icepacks on my hands and feet and had no neuropathy and always had ice in my mouth to reduce symptoms like mouth ulcers. I had remission both times.
Yes, talk with your oncologist and hopefully they can give you information on a possible lower dose, pro's and con's or if they can go ahead with the operation, without the chemo?
Ask them if it will really make a difference? It is important to have a bit of weight on, before the op, so I had protein drinks, fruit and 'grazed" on small meals. Gather all the information you can and then follow what really feels right for you.
I hope all goes well for you and sending hugs from Australia.
You need to be sure they can still do the surgery if you don’t have the last chemo. The mass may not have shrunk enough without it.
I was told by my surgeon to build myself up for my op by eating plenty of fish because the protein helps healing I think. This never happened because I was unable to eat at all but it seems a good idea. I took L- Glutamine when I was on chemo and didn't get any neuropathy - can't prove that this stopped it but there is a lot of info about it if you google- possibly some on this site as well. My onc said it was ok to take it.
I had 3 chemo before surgery to try and shrink the tumour bulk. I wasn’t to bad after the first 3 just some sharp pins and needles and fatigue. I was 7st .10 before starting chemo but somehow ended up putting on 10lb.
I actually got my Taxol dose reduced at no 5 due to the pain in my hands and feet. I have just finished treatment for reoccurrence and having some serious problems with my stomach and pins and needles in hands and feet. Do ask your onc if they can reduce your dosage, as this may help with the side effects, and drink as many protein drinks as you can as they are high in calories.
Hugs Ellsey xx
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