Hi All. I’m off to see the Oncologist this morning. I’m having a PICC line put in on Monday as my veins won’t manage all 8 cycles. As they can only use my right arm it seems sensible.
Has anyone suffered with the injections to boost white cells. I have had lower back and hip pains. Couldn’t stand for long either. Maybe it’s because I’ve had hip replacements! Lol
So sorry to hear you had problems.Hopefully they can be more prepared for that for your next session. I hope you are feeling better now. Well done for going for a walk and doing some ironing. I think its good to get on with some normal things when we can. I had a quiet day today other than a couple of short walks. All being well I'm hoping to do a few bits around the house ...and get out for a longer walk tomorrow
Take care xx
Started my Fec yesterday. As always with me it wasn't straight forward! The drugs hadn't been orderd from pharmacy and then pharmacy had to send for them. So from having an appointment at 1.15 I finally had chemo at 4.15. It wasn't nice waiting around for that long. But it went well when it started and at least I'm one down down! I tried cold cap but because I was already quite distressed from cannula (the cannulla went fine ..I'm just such a wimp!) I took it off after 10 minutes.. so hoping my wig from MacMillan is ready soon! feeling sad though now that losing hair is a reality.
So far so good though after chemo - taking my meds and no sickness or nausea. I hope you're doing well marykamille. My next chemo is new years eve like you as apparently I should be in the monday group but they couldnt fit me in this time round.
Hi Pastasmissus - I have peripheral neuropathy in my feet from a previous illness. Thats why they put me on FEC. Also, although I didn't sleep great last night I haven't had any problems with the steroids. I had one lot at hospital yesterday and then I'm on them for 3 days. I drank loads of water from day before chemo - about 2.5 - 3 litres and I'm continuing to do so. I'm thinking thats helped with how well chemo went and how well I've been feeling up until now...fingers crossed!
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.
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!
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
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.
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.
@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.
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!
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.
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.
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
I think your post must have come through as I was writing mine earlier. If you don't have somebody around permanently who can care for you if needed it makes things feel worse doesn't it. If we all knew exactly what side-effects we were going to get we could prepare more. Its the not knowing that makes things worse before you start. Sorry to hear your husband has COPD. My mum has it too. I hope he's doing ok.
Lots of love to you
So glad I joined this thread. It does help you to feel less alone.
Lulu47 - oncotype is a test for women who are thought to be at low risk of recurrence. The criteria to have it done is ER +, HER-, no nodes or 1-3 nodes, early breast cancer. It's a genome test (I don't understand the science!!). A sample of your tumour is sent by your hospital to the Oncotype labs in USA. Results back 2 weeks later. Usually these do confirm what the MDT have recomended but occasionally - as in my case- it can change treatment plan.
bazzies - Happy Birthday for Saturday!! Thanks for the tips. I found out today that my meeting with chemo nurse is Sunday 9th and chemo starts Tuesday 11th. Its my birthday on the 10th and I've got an appointment at the MacMillan wig centre....a wig for my birthday...yippee!!
Shi and Kateday - thank you for all your support and tips.
Jennie1966 - I'm guessing we're around the same age. I'm December 66 baby....will be 52 on Monday!
Marykamille - Isn't it awful when you've been given such hopeful news to then have it snatched away. You have to readjust yet again. On this journey I went from potentially only lumpectomy and tamoxifen, to mastectomy and tamoxifen, to mastectomy, rads, tamoxifen, to mastectomy, rads, chemo, tamoxifen. I really hope thats it now!!
Hello. Diagnosed 16th Aug. SMX with auxilliary clearance with immediate reconstruction 23rd Oct. Saw oncologist last week. I have triple negative cancer stage 1 grade 3, and will be starting chemo soon. Just waiting for the date. Hope its asap as my daughter came over from Australia to care for me after my op and will have to go back end of this month, so would like to get started with one or 2 cycles while she is here incase I get nasty side effects. Husband cant do much to help me as he has very severe COPD and is on oxygen 24/7. So dreading this Chemo particularly the side effects.
I had a similar experience in that I moved from mastectomy only and nothing further, to chemo and rads and and ....
You will feel much safer when all this is over and you pushed for that little extra to make sure of no recurrence.
You could try looking at an earlier thread for people who started chemo in a previous month for more info.
I had a few SE’s acid reflux for 24 hrs I rang my unit and they gave me details of what meds to ask doc for, this was then under control👏👏 Unfortunately had nausea for the first 6 says ( didn’t vomit and unfortunately didn’t out me of food, I’m piling the weight on 😂). The other SE I had was day 4 and day 7 bone pain in lower back and hips due to fagrim jab😢. But of sore mouth but gargled regularly with salt water. Good news saw oncologist last wed and he has changed my anti nausea meds for next round as says 6 days long time for nausea, also gave me some mouth wash, told me to take ibrubrofen for bone pain, so I’m all ready for next round a wk today 10th Dec. Got stinking cold at mo which is reAlly annoying hoping to get my Xmas tree tomorrow and meet up with my YD. Need to lose this cold as my birthday sat and want to enjoy it. The udder cream I wouldn’t buy it the hospital gave me mine ( it is expensive cause initially I did buy tub), I must admit I have nothing but praise for the NHS in my area the results seem quick return ( within a wk) and staff are so supportive. ,I have the most amazing BC nurse and I can raise any concerns with her, even though I’m now with Oncology she is at end of phone😀😀. Sounds like a lot SE Angelblue, all I would say is don’t try to be brave and suffer ring your chemo nurse for advice. If it wasn’t for this cold I’d be out and about partying.... ‘‘tis the season guys🥳. Another plus I’m on day 15 post chemo head tender but no shredding yet. No I didn’t cold cap. Sorry I’ve rambled a bit guys hugs 🤗 to you all, we can do this, good luck everyone 💪💪💪
After just posting in this group and asking if anyone else was having FEC (I shall be starting that soon)I realised you have already started it. How is it going for you?
I hope you are doing well xx
After being told post surgery that I wouldn't need chemo I am now starting chemo this month! Just found out on Friday and its come as a shock!
Prior to my surgery on 27th September I was told I would most likely just need Tamoxifen. After surgery I was told rads and tamoxifen. On Predict, chemo only gave me an added benefit of 1% and as my cancer was early the MDT decided no chemo. But as I'd been doing a lot of research I argued for and eventually got an Oncotype Dx test done (I fit the criteria...early stage, no nodes etc) I really wanted this as peace of mind. Rads were put on hold and there was a 3 week wait for results. Then on Friday the oncologist called me in. My Oncotype score had come back high at 31. Thats just in the high risk of distant recurrence group. It was a complete shock after such a positive prognosis by MDT. I was expecting a score of under 17!
So now its all going to be a big rush to get chemo started as you have to start within 12 weeks of surgery and this Wednesday will be week 10. After being told I definitely wouldn't need chemo and being made to feel like I was over reacting by insisting on the Oncotype test to confirm this, its not been a great weekend!! Still trying to absorb this complete change in fortune!
Do any of you ladies know which chemo drugs you're having? I've been told FEC as I have numbness in my feet from a previous illness. I'm hoping to find some ladies who have previously had FEC for their experiences, although everyone is different I know. It's just that from my reading over this weekend I've read that some drugs are considered more doable than others.
This is all so so scary!!
Love to you all xx
.... and Val, definitely still take that holiday if your oncologist agrees it fits in with your schedule. It will do you good. xxx
Hi all, I just wanted to wish you all the best. It's much scarier just before chemo than when you get into it. It does feel very daunting at first. I finished 8 rounds of FEC-T just over a year ago and getting back to normal now. Here's my blog which has lots of suggestions for coping with side effects. http://lifeafterlola.com/ Hopefully you wont have as many side effects as me but I think it's nice to feel prepared for whatever chemo throws your way and know you can get through it. Take care of each other on this thread and you'll probably be friends for life. I'm still in contact with my chemo buddies. Best wishes. xxx
So good to see all these posts. Cheered me up immediately. Will answer some individually and no doubt we will all pick up the rest as and when.
I'm hoping to be starting before Xmas sounds strange I know but I just want to feel like something is being done. I have to see my oncologist again on 12 December so hopefully after this or even during the next week I'll get a defenate date.
Going to an information session next Thursday at the hospital so hopefully I'll be able to find out a bit more information then. I've got TNBC and so my Onc has suggested x4 EC Chemo in 2-3 week cycles followed by x12 Taxol/Carbo weekly.
I had my diognoses 25 October so im super ready to start treatment now and get on with things.
I should be on Nov as had 1st round 19th my second round is the 10th so will be thinking of you starting. The support is amazing even if you don’t post. Everyone is different the common denominator is fighting of the evil BC. Do you know what chemo you are having yet? I am having FEC T so 3 rounds of FEC followed by 3 T, I am 10 Weeks post op left mx with anc and recon. All I can say is Take each step at a time. I have an amazing BC nurse to be honest all the staff are amazing, don’t bottle things up and don’t be hard on yourself big 🤗