My dear twin sister was just diagnosed with stage III endometriod adenocarcinoma. She is only 41 years old! Full panel of genetic testing being done.
She just had her radical hysterectomy/oomentum removed, etc., Yesterday was her first day of chemo; she is on Taxol and Carboplatin; high dose every three weeks for 6 cycles. Can anyone tell me what the chemo will be like/what is or was your experience? Where you able to work at all? Mouth sores, nausea, peripheral neuropathy? remedies?
These are sacred stories. I am sorry I have to ask, but much appreciate any advice you wish to leave here!
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ForMyTwin
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I have just had my fifth session of taxol/carbo for ovarian cancer as part of my first line of treatment. I have been fortunate in that I have tolerated it well. I have had no sickness or nausea or mouth ulcers. During the first week following treatment I have one day when I feel a bit woozy (low blood pressure) and a couple of days suffering from some joint and muscle ache. That clears and during the second week and the third week I feel quite well. You do get tired but I certainly don't need to rest all day. I may be busy in the morning and then rest during the afternoon. I have had a bit of tingling in my fingers but nothing severe and have not needed to change my dose. I'm fortunate that I am retired (61) and not sure how I would manage chemo and work. The nurses advise not to work during the first two chemo sessions but see how things go. It's also important to keep away from any source of infection during days 10 -14.
So my experience has not been too bad and I really hope your sister keeps well throughout her treatment. The time will soon pass.
Travy thank you so much for taking the time to post this. I am hopeful my sister's experience will be similarly mild. You must have an ace up your sleeve. Bless you for being so strong.
Hi. I have peritoneal cancer and had the same surgery. They also had to removed part of my lower colon and they had to scrape all the organs in there to try and remove as much cancer as they could. I had the same chemo regimen. I mostly felt really tired, no vomiting as they give you nausea medicine along with other medicine to help with any side effects. I worked during but there were many days I had to leave due to just being tired and not being able to focus well. Chemo brain is real for sure. I finished my chemo in May of 2014 and so far so good. I have a checkup on July 1st. Fingers crossed. Prayers for your sister. Cheryl
Cheryl good luck to you, too. Christine isn't working either till she sees how the chemo affects her. We know one woman who would actually crawl under her desk and nap she got so tired. Chris doesn't have a desk, she's got a med cart and a Hoyer, so that won't work. Hugs, Cheryl. Thanks for your time.
HiFormyTwin,I had 6 cycles of Carbo\Taxol.My hair started to fall out week 3 after 1st cycle,I got it shaved off.I suffered from chronic constipation after 1st 2nd cycle but was then put on Movicol which was a God send.I kept up my oral hygiene,rinsed mouth out 4times daily brushed after meals so I was so lucky didn't get mouth ulcers.I had bad pain in my shins,ankles but that was controlled by pain killers.Everybody is different and will respond differently to treatment.Keep in contact with Liason nurse esp if there's a problem or worry,that's their job so don't be afraid to call or question.Its probably more difficult for you than your sister as you've got to watch and wait.My best wishes to both of you.
It's really great to get all these pointers. Thanks so much. I wondered what people do about the mouth ulcers, particularly. I'll be sure to pass this on, and don't you worry, neither Christine or myself hold back when we have questions or concerns!
Hi I have stage2 and had total hysterectomy in January and had my last of 6 cabo/ taxol treatments yesterday in Waterford. It's all very scary at first but the nurses are exceptional and will answer any concerns over side effects and symptoms and will talk you through want pills to pop. Usually each cycle forms a pattern and you get used to what to expect and how to deal with it I found keeping brief notes on my smart phone useful to help me remember what happens when.. Also useful tip is to keep a record of when you finish drinking each of the 6 pints of daily water so you are sure you've drank it. Not had nausea popped the pills suggested to be able to avoid it . On day 3 joint and muscle pain set in for 4 days controlled with pain killers, constipation from steroids and anti sickness first few days so took a liquid Laxose prescribed. Tingling in hands etc but only lasts a few days. General fatigue but after Ten days or so you begin to feel stronger, avail of any local services for therapy as its for the whole family ie massage counselling and reflexology it all helps you all to keep positive. A sense of humour on the chemo ward is great, take chemo buddies to make the day pass quickly and chocolates and cake for the staff! I have had vein problems and had a rare incidence of vein collapse and taxol getting into my flesh very frightening but immediately dealt with by nurses . You need to be vigilant to tell them of any changes whilst infusing is goin on and keep watch of the cannula site. For the last three I had a ports cath inserted and that was much better for me. My arm still has pins and needles and numbness especially after each treatment but signs are good that when all this is totally out of my system it will go back to normal. So to recap be strong face each chemo as something that will make you better and not kill you, keep a sense of humour , we maybe sick but we don't have to be down and out. Be watchful during infusion. Ask staff questions if you are worried and they talk you through what to do, and surround yourself with good friends to keep you positive, if anxiety creeps in find some distraction. I find knitting and adult colouring have been great as with all the sitting around I have done after being an active hard working self employed contract cleaner , I have at least something to show for it! Hope this rather long winded reply can give you both and others some tips, I also chose to be up beat about the hair and arranged for a friend to come and shave me we had great fun with various styles the Mohawk looked the best then a little tuft like a duck before final number 2 all over! I still had more hair than my husband! Now I'm happy to walk around bald, with beanie hats or for a cancer free walk around the shops my new hair to wear. Wishing your sis a trouble free time just take each day as it comes and do what you can that day. Kind regards.
Hi after my last reply I forgot to say o did have mouth ulcers and a sore roof to mouth during one round and they have a magic mouth wash they can give that you swill around the mouth and it knimbs it so that you can eat without pain and you keep up the normal teeth brush salt water mouth rinse and after a week it will clear up ok.
hi there, I'm sorry to hear about your twin sister. I was 41 when diagnosed and I'm 42 now. I am stage 4 and had 6 cycles of carbol and taxol the same as your sister. I had 27 treatments in all including maintenance and just finished today . I'm on a 'break' !
Everyone experiences the treatment differently but usually there is fatigue, nausea, mouth sores - but i didn't have these, and some more but not all the same time.
For me and I think for some others the treatment and its side affects come around in cycles and I felt very ill for 7-9 days , good for the next week and very normal for the last week.
I felt I had to go through it to see what way it affected me and my body and mind. This helped me deal what i could expect from myself each cycle.
I used the local cancer support centre to give me help with complementary treatments, and one to one counselling. Also attending Ovacare patient days and this type of blogging helped me. I also did art therapy which helped enormously . You and your sister will find what helps her with the side affects by talking to her doctor and the oncology nurses. And also she will find the thing - walking, sleeping, painting, drinking coco, sitting in the garden, therapy, reading etc that will give her solace. My advice is be pro active with side affects -and have solutions at hand .
I have a mini drug bag in my handbag, at work and at home for any ailments that come up anytime.
I wish you both well and there will be difficult times and humour will crop up at unexpected moments.
having you as her advocate already is a great help
Was on tax/carb once a week for 6 months. Had microscopic cancer in the omentum. Had t/c every Thursday and I was ok till Sunday then on the couch for 2 days. No nausea, but really tired and feeling lousy. I have asthma and after the 4th round of chemo started with bronchial symtoms. Had ct scan and there were spots on my left lung. Come to find out it was a lung infection from the chemo. The more chemo I had the worse the cough and having a hard time breathing got. I couldn't walk up stairs without loosing my breath. That all went away after the chemo stopped. It took a while but now I am fine. My surgery was Oct 20, 2015. My oncologist took 7 biopsy so from lymph nodes, etc, the 9cm x 5cm cakey omentum and other areas and the only cancer was in the omentum. I had had a total hysterectomy in 1996. In 4 days it will be 1 year since my surgery. My last ct scan and blood work were fine . CA 125 was 12. I go every 3 months for scan and blood. I was VERY LUCKY. My Dr said when she opened me up in surgery she expected me to be loaded with cancer but found a microscopic area in the omentum. I am very blessed. Prayers to all.
Hi, sorry to hear about your sister. She is young, but thats the good thing, she will fight hard!
I was 37 last year diagnosed with high grade stage IIIc OC. Very aggresive surgery followed by 6 sessions of chemo. I have my full journey through cancer written on my website. It might help you and give you some tips as well, so you are more than welcome to have a read hairlessbeauty.ie/my-story/
Try to be positive and strong, for you and mostly for your sister. She will need that!
Thinking of you and best wishes to you and your sister
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