12-12-2018 12:08 PM
Saw oncologist today and start FEC 20 December. Not sure yet whether will go for 3 FEC then 3 FEC-T or just FEC. Worried about peripheral neuropathy (losing feeling in fingers) with Taxotere and also psychosis due to more steroids (on lots of meds for depression anyway).
Spent the last hour organising wig, haircut, bloods pre-chemo. Fortunately have already had dental stuff sorted. Will have to wait and see if I am up to going out for Xmas lunch as planned.
10-12-2018 10:25 PM
10-12-2018 09:31 PM
ps I think there will be a few of us doing festive chemo... drummerswidow on Christmas Eve, marykamille on New Years Eve and mine should fall on New Years day..although I don't know yet if chemo suite will be open then! The positive I'm taking from it is that for future christmas holidays we can look back and think how far we've come!
10-12-2018 09:18 PM
10-12-2018 09:03 PM
Wow marykamille! I'm amazed to hear from you today! You're giving me hope for tomorrow as I'm so scared! I'm pleased it went well for you. I hope you continue to feel ok. xx
Rapunzel2018 - don't feel bad... it is good to find that others feel as scared of chemo as you do... its such a lonely experience and it helps to find others in the same situation who are feeling the same as you. Its bad enough being told you need chemo but when you're told you won't need it and then find out later you do its hard to adjust again. I'm on 6 FEC as well starting tomorrow. I have to say that right now I'm petrified! But reading marykamille's comments after she had her first chemo today is making me feel stronger. I was going to try eating less today. Its my birthday and I cancelled my birthday meal but by this evening I was feeling miserable and hungry and we ended up having fish and chips....hope I don't regret it tomorrow! xx
10-12-2018 07:11 PM
10-12-2018 07:09 PM
10-12-2018 07:03 PM
Had my 1st Chemo today and am OK so far. Tomorrow is another day! I have a 2nd one on New Year's Eve! They have to include these days in order to get through the numbers of patients, apparently. Very good luck to you.
10-12-2018 06:49 PM
This may sound awful but I find it so helpful to read that other people are just as scared of starting chemo as I am.
I'am another example of someone who was first told they wouldn't need chemo (only rads, no mention of hormone therapy), then was told I would need everything (plus re-excision after lumpectomy), then again told that chemo was probably not advisable (only rads and ht), then was offered to do an Oncotype test, and after the result came back (25=higher end of the intermediate spectrum), I am now waiting to hear when chemo starts (my oncologist said: before Christmas, oh joy).
I also did fertility preservation/emergency IVF while waiting for the Oncotype results, and am just dealing with what will hopefully be the last side effects of that.
In these past months, ever since the BC diagnosis, I've learnt that often going through treatment in the end is not as bad as I thought it would be before it started. I absolutely keep fingers and toes crossed it will be the same with chemo. I'm down for up to 6xFEC (although I still have doubts about F), and I'm planning to try fasting or at least eating less and vegan before and shortly after each chemo session.
So glad to have found this group - and all the best to everyone here who spends their 2018 Christmas season in a slightly different fashion from other years.
09-12-2018 10:33 PM - edited 09-12-2018 11:15 PM
@maryKamille A June 2018 chemo starter here (and just finished officially this past Thursday). I thought I'd share my nail experience with you. I occasionally wear nail polish, but not often, as it dries out my nails, too -- and my nails were pretty dry and ridged before starting chemo. During FEC, I'd been told that the main things were to keep the nails trimmed, so I cut them very short the day before each cycle, and to protect them from UV exposure (it was summer), so I applied sunblock to my bare nails when I was slathering the rest of my body. I also applied cuticle oil once a day and moisturizer morning and night.
When I switched from FEC to docetaxel, everybody suggested dark polish, so I started with that, but after about a week I was worried about them drying out. So I took off the polish and upped my moisturizing. Georgie Gee, an August '18 chemo starter, recommended Polybalm, which was trialled at her hospital. It's pricey, but I decided to give it a go -- just 1 order, stretched over all my cycles by supplementing 1 application per day with applications of cuticle oil.
I'm day 24 after cycle 7 (3 FEC followed by 4 TPH), and my nails are all still intact. You can even see the white Mees lines from each cycle of chemo -- running horizontally across the nails -- growing out! My right thumbnail is slightly sore, so I might trim my nails back again to keep them from snagging; these are grown out from last trim 25 or 26 days ago.
I've also kept all my toenails, despite moisturizing them less frequently -- just after shower and before bed -- and despite having a nasty pre-existing nailbed injury on one of my big toes. (Still half expect that nail to fall off, but I've been expecting that for about a year now.)
Of course, we all respond differently to chemo, so this regime may not do the trick for everyone.
For instance, I didn't have several of the typical side effects -- nausea, vomiting, or mouth ulcers -- but I landed in hospital twice: once with febrile neutropenia, once with a C difficile infection (the main symptom of which is, ahem, severe diarrhea). I also got what the oncologist thinks was shingles. So other parts of my body took some punishment. But in the end, it was all doable -- and now I'm through!
I can't say enough how important it is to keep an eye on your temperature and the other stuff in your chemo hotline list -- and to call your chemo unit or hotline whenever you have questions or concerns. They are there to help -- and amazingly supportive and reassuring, and ready to get you seen by a doctor asap when you need it. I also learned tons from my June starter-mates (I still am!), as well as from Shi and the other community champions who pop in with advice and guidance.
09-12-2018 06:07 PM
I had my chemo talk today. With a group of older men! I then had 10 minutes 1-2-1 with chemo nurse. After speaking with her I've tentatively decided to give cold cap a try. I already have thin, fine hair and I know I may still lose a lot, especially on top and would need to wear a wig or top hair piece thingy. But I'm thinking that at least when I have a hat on I could have my own hair hanging down at the sides still. I'll see how it goes, if its too awful I'm not bothering. The thought of a cannula and chemo are bad enough on their own!
hi gocat - have you spoken with Macmillan to see if theres any help you can get at home after your daughter leaves. May be worth a try. Its frustrating that it can't get started before your daughter leaves. Could you try speaking to hospital again? I hope you manage to start sooner.
Good luck to everyone starting this week. I think a few of you are Monday and I'm Tuesday. Although I'm dreading it I'll be glad to get the first one out of the way!
09-12-2018 04:11 PM
I had my pre-Chemo session last Friday and it was a one-to-one which surprised me. The nurse mentioned about dark nail polish to stop nails lifting and I might give that a go, if I can find any. I don't usually wear any at all as it dries out my nails.
08-12-2018 09:42 PM
Got my date today to start Chemo. 27th December. Got pre chemo appt 21st December.
Bit annoyed really as had my op 23rd October, daughter came over from Australia to care for me. She has to go back 30th December. She was due to go back 6th Dec but managed to extend her stay a bit when I found out would need Chemo. Would have liked to have got a cycle or two done while she was here incase side effects are too much for me. Got my husband here with me but he has very severe COPD on oxygen 24/7, so wont be able to do much for me. I usually do all the running around. Saw Oncologist 29/11 and he said would try to get it sorted I started Chemo as soon as possible. Guess it wasnt possible.
06-12-2018 02:11 PM
What a scary time this is! I think the waiting makes it worse! I've started planning some nice things for when this is over... to get me through and have something positive to focus on .
I've been scouring the forums for advice for dealing with side effects and thought I'd share a couple of things that have cropped up a few times...
I've read that Manuka honey is really good for mouth sores. I've bought some with a 15 MGO rating. Bloody expensive so hoping it works! I've started taking a teaspoon a day already. I've also read that putting dark nail polish on fingers and toe nails is supposed to help save them. I'll be trying out a nice inky blue colour I've had for ages but never worn!!
I've also read that fasting can help with side effects. There are several threads about it on this forum and some information available on the interweb. Aparently fasting 48 hours pre and 24 hours post chemo can help with side effects especially sickness and nausea and its thought it can make the chemo more effective at attacking any cancer cells. (This is just what I've gleaned from quick research ..I'm obviously not a medical expert). I couldn't do 72 hours of fasting (you are allowed water, herbal tea, some steamed veg). But I've decided I'm going to eat less the day before my chemo (would have to be my birthday!!). On the day of chemo and day after I don't think you eat much anyway.
Anyone got any other tips?? xx