My operation for my ovarian mass went quite well and was no where near as bad as I was expecting it to be, the worst thing post op were the wind pains.
I received my results on Friday and I have stage 3 ovarian cancer, it had affected both ovaries, appendix and omentum, all visible tumour has been removed. I also have a lesion on my liver which remains.
I am to see an oncologist the second week in January to plan for chemotherapy, Is there anything in particular I should ask and have any of you used the cold cap with success
I look forward to hearing from anyone (who has time, as its Christmas eve) and wish you all a very happy Christmas x
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Craftycromwel
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Hi, Im sorry you have had this news, never easy and particularly at this time of year. I was diagnosed Stage 3 over 11 years ago. Ask if there are any trials available, thats if its something you would consider. Dont bother googling statistics as these are most likely out of date and you will only upset yrself. Do try to enjoy yr Christmas, worrying cant and wont change a thing xx easy to say I know but I have been where you are now and it can feel a lonely place. Sending you a big hug, Kathy xx
Thanks Kathy for you encouraging reply, I'll have to ask about any trials as I don't understand how they work, at the beginning I was googling everything but now I don't so much as because as you say statistics quoted are often several years old, I feel quite laid back about it all at the moment but I'm sure that will change come January,
Hi Ann , so glad to hear you are feeling 'laid back' thats the perfect attitude. Have a great Christmas xx
Hello - you are through the worst of the treatment - the op. l found chemo doable, your personal treatment plan will depend on which OC type you have. I didn't bother with the cold cap, I heard it was painful and not always successful, this is something you could ask your oncologist about. Good luck with the rest of your treatment. Have a lovely Christmas
Thank you Lynn for your reply, I've also heard the same about the cold cap and I think it's just another thing to contend with, I'll post again once I've seen my oncologist,
I have just finished 18 weeks of taxol using the cold cap. It has been a success. My hair has thinned nobody else would know but I do. How effective it would be on 3 weekly taxol /carbo not sure. Put a silk scarf on your pillow. Use a wide tooth comb only. I never used heated aids. Fortunately my hair is mid length curly and I tied it up. Use chemical free shampoo and conditioner. Only wash minimally. I sometimes went over 10 days. Gentle when combing and held ends. Used the Paxman system which is more successful. First few times were difficult but it was doable for 18weeks. On head in total approx 2 half hrs to 3 hrs. Carbo is known not to make you lose all your hair. I took 2 paracetamols an hr before., as discussed with Oncologist. So glad I tried it. 1st line I lost all my hair psychologically it has made such a difference and helped me keep a sense of normality. It is not in bad condition either as a lot of conditioner is used at each infusion.
I feel it also helped with neuropathy in that I had no problem. Best wishes what ever you decide and good luck. Maureen
Thank you Maureen for your very helpful and interesting email, I will wait and see what is offered to me, I'm pleased it was successful for you, I hope you have a lovely Christmas
Wish you all the best, couldn’t be bothered with the cold cap since I felt I was putting myself through enough and there were mixed results and such a phaff!
Happy Christmas and peppermint tea helps with the wind pains!😳xx
I didn’t try the cold cap so if you are leaning that way, I’d recommend you sort out your wig soon as there’s a lot to think about, same as your usual style, totally different, length, colour etc. You won’t want to do this in a rush. Also a couple of scarves, hats, would be useful.
I used the cold cap while I was on 6 months of Carbo, Taxol & Avastin. I was having treatment every three weeks. The cold cap is tough for the first 30 minutes. After that I didn’t notice it. You need a good distraction for the first 30 minutes. I used The Archers podcasts to distract me. My hair still thinned quite a bit but I kept most of it. I was glad that I used the cold cap although it did add another level of hardship to chemo day. You could try it and if you hated it you could stop using it. It seems to work for most people.
Well done on handling the surgery so well. The main side effect I had with chemo was fatigue, but it was manageable. I didn’t have the cold cap, but kind of wish I had tried it, since it’s taking awhile for my hair to get to a length where I’m comfortable ditching the wig...but I had always had long hair in the past. Not a big deal by any means, but I’m just tired of the wig. I hope you have a wonderful Christmas, a smooth recovery, and great success with the remainder of your treatment.
I heard you can decide to use the cold cap later on in your treatment if necessary. It adds extra time to each session so I haven’t bothered with it. My hair is thinning rapidly but I had it all cut off very short in advance so it doesn’t show too much yet. I believe it’s the taxol that does it. I’m on 18 weekly taxol treatments and carbo every 3 weeks but the effects are cumulative.
As others have said it depends on the type of oc it is and how aggressive it is as to the chemo they offer ( the Macmillan booklet is really helpful I found for trying to get my head round it). The more aggressive the better the chemo seem to work.
So nice you feel laid back--there is time not to--but maybe you won't have that feeling. I found Frontline itself tolerable and with all pre-meds offered, did not suffer the "usual" nausea I hear about. Here in New York where I went/go for treatment, the biggest thing to deal with where the waits. Waiting time was such a waste but eventually I created diversions (friends, games on my ipad, magazines) that helped a lot. Also, if you can, keep exercising...walks around the block or more aggressive types if you feel up to it. My onc said exercise eases many side effects and I believe it helped me a great deal. But if you can't, its fine too. (You can do no wrong oxoxoxox Judy
Hi Ann. That's very unwelcome news indeed. Still: Well done making it through the big surgery and facing the coming treatment in good spirit.
Prepare for chemo to be primarily one thing, on chemo day (after the initial feeling of anticipatory terror wears off): Boooring. And that's good, really good.. because it means everything works the way it should. The following few days you might still be helped by the meds. Some of us feel the side effects mostly around days 3 to 7 or so, before we gradually get better and - latest in the 3rd week - feel reasonably human again. But everybody is different.
If you're a borderline obsessive compulsive planner like me, you could stock your bathroom cabinet with an assortment of supplementary OTC countermeasures for typical chemo side effects, in alignment with your doctor's advice. Some of my own examples include: ginger and sea bands vs nausea, Movicol stool softener /other laxatives vs constipation, sensitive skin treatment, specific mouthwash vs mouth sores, silicium based nail treatment vs nail damage, some Paracetamol, antiseptic wound treatment, band aids etc. That way, you don't have to head to your gp for the small things. If you end up not needing them, even better.
As the ladies said, you might want to think about whether you want to use a cold cap, or maybe even cool your feet and hands, to try and minimize any unintended impact of the Taxol infusion on those body parts. It's a hassle and not very pleasant, but it could help to keep busy (see the above point) .
A pillow, a snack (if not provided), your phone/tablet charger and possibly a blanket are staples for the chemo ward. There is also a good chance to meet interesting folks, and even for some great friendships to develop.
Best of luck with the treatment. First and foremost though, a good Christmas. All the best. Maus
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oxoxoxox Judy
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