How are you all doing?
For those of you who have had their last chemo's what are you main problems and how are you coping?
My main issues are:
Watery eyes which I'm dabbing with a cotton hankie
Weakness and stiffness in my legs which are seriously limiting my ability to exercise
Breathlessness when I walk more than 20 meters
Numbness in my finger tips and discomfort in my nails if I knock them
Weight gain even though Ive not had ANY choc's, sweets, crisps, biscuits or cake in the last week!!
I also feel very up and down emotionally over the last few days, feeling very worried that I might be stuck with side effects and remain looking bald and dumpy forever......................... sorry for the doom and gloom, no one else understands these dilemmas.
Hi Flower, thank you. My surgeon also said that lumpectomy plus radiation leads to the same outcome as a mastectomy. It is really helpful to know you researched this too. I am getting another 12 lots of Herceptin as well. Good luck with your radiation. We are definitely getting there! Even beginning (not exactly willingly yet though) to think about the 'back to work' issue. On half pay from tomorrow.
Love to everyone. Xx
I am was glad to read about your scan result. Fantastic! 🙂 My eyes were dry to. I used Visine eye drop that worked like a dream.
About your surgery. I asked for a bilateral mastectomy as I too thought it is safer than a lumpectomy. I did tons of research after my doc said it is not and he was right. After the lumpectomy there is always a radiation and it gives the same result as having mastectomy. They did axillary node clearance on both sides for me and they cut our quite a bit from my breast on the left side. As Katy said, the drainage is weird but super useful, for me it was in for 6 days or so.
As for me, I am starting radiation at the end of November after my check up is done. My CTs, MRI etc. are scheduled in the next two weeks, and I will start hormone therapy as well while continuing Perjeta and Herceptin for 12 rounds more. Slowly getting there.
Take care, everyone!
Thank you Katy. I will look out for eye mist in Boots tomorrow. I am not sure exactly what they are doing to me op wise. The consultant said he thought a 'wide local incision' would be ok to remove the lump rather than a mastectomy but I am meeting him again on the Friday before the op to discuss it again. Part of me is thinking I should ask for a mastectomy anyway to be safer but he seems to think there wouldn't be a difference in risk (I am not convinced!). Either way he is removing all the lymph nodes from my armpit one of which had a big lump in it. It is really reassuring to hear how well you coped with your operation.
Hope you managed to enjoy a bit of your time in Scotland and that you saw lots of deer (probably wet deer - Scottish weather is not the best!). Xx
Good news on the latest scan, will you be having full or partial mastectomy? I had full and found it easier than expected, practically pain free. I had 2 drains into start, one came out after 36 hours the other nearly 2 weeks later. They were weird but u get used to them.
My eyes have been sore and runny too. Dr gave me some drops and night cream, but I have also used boots eye mist for dry eyes which works well.
Best wishes everyone x
Thank you Helly and Silver-Pixie. It is very reassuring to hear how well you have recovered from your op Helly. Mine is booked for 18 November although that may change. Will be good to get it over with. It is now 2 weeks since my last chemo. My eyes are constantly watering making it look like I am crying all the time when I am not. Went to pharmacist yesterday. They said 'well it could be because your eyes are too dry or it could be because your eyes are too wet'. Not exactly useful! Does anyone else have this and if so what has helped? They said I could have 'drying your eyes out eye drops' or 'moisturising eye drops' but I am reluctant to use either incase I choose the wrong one and make it worse.
Sending Hugs to all of you. Xx
LucyLump that is fantastic news ! So happy for you ! Onwards and upwards now ! Sending you a big hug x
Thats fantastic news, Im so happy for you, hopefully the surgeon will be pleased too and can get you booked in swiftly, I had lumpectomy in June prior to chemo and healed really well, I didn't bother with any creams and I can hardly see any scars now, altho when I first looked at the wound I cried as I thought it looked like a mutant boob, it just looks normal now and the node removal scar just looks like a crease in my armpit, all very boring now!!
Hi everyone, just back from my ultrasound. Was quite anxious as last ultrasound after the 3 FEC showed lump had actually slightly grown but this time after the 3 Docetaxel, Herceptin and Perjeta the radiologist struggled to find it at all. He said it had 'hugely improved and responded really well to chemo'. I will find out more when I see the breast surgeon on Thursday but today is a good day and makes all those horrible side effects worthwhile. Thinking of you all and sending hugs. Xx
Thank you for thinking of me.
Have had my (hopefully)last chemo and they are already getting sorted for the rads.
Feeling tired and very painful joints today but going on holiday anyway!
Still have sore mouth and bottom so feeling a bit down and so am saying f**u cancer iam going on holiday! Nurses ok with this as not out of the country, so here we go!
On another plus note my hair is definitely starting to grow back 🙂
Best wishes everyone x
Really sorry to hear you are in hospital LMC. Hope you are getting better and will be home again soon. Xx
Thanks for thinking about me, I have just had my 6th cycle 3 days ago, so I am still in the side effect stage, taste went bad so fast on the same day of chemo.
I have one more cycle then am done.
We are of same age so I can relate with you when you say your energy and brain is like that of your granny lol.
I can't wait to be done with chemo.
Big hugs to you... Cheers.
Hi Helly thanks for thinking of me. Hope you are well.
the PICC line went well. They had one vein to work with and he managed it, however I’m now in hospital again due to infection. White blood cell really low so I’m in isolation for maybe 5 days. Hope no longer and I get sorted as I want to be ringing that bell on the 6th Nov xx
Hi Silver Pixie
Im sure the doses are still strong enough to give the baddies a good battering!
I spent much of days 4 to 14 of cycle 5 in tears of feeling emotional but by day 16 I was so positive (even tho I have the physical energy and memory of my granny).
I smiled through the whole of the administering of cycle 6, my chemo finale!
Bring on the pain, fatigue, night sweats, weakness, breathlessness, chemo brain and yucky tastes ready to welcome some more energy and hopefully some hair, knowing my luck I wil have big bushy legs and a bald head 😂!!
Love Helly xx
Hi Helly, thanks for thinking of me .... so glad you’ve finished and got to the end of chemo.
I had round 5 today so only one to go ... get the side effects over with and I’m nearly through . It’s been hard , I’ve had reduced doses because of some severe side effects but I’m hopeful that it’s enough to have zapped any cancer cells lurking ! Like you I have a dedicated husband who has done all appts
chemo and emergency drives to A&E at 2 in the morning !
Sending you a hug too x
How are you getting on with treatment, and more importantly how is the holiday?
Thinking of you
Yay! Well done on your final chemo. Like you I am so relieved to have finished. Am feeling a bit spaced out today and tired but counting down the days until I feel better. Most of all really looking forward to getting taste buds back! Sending lots of love and thoughts to all of you still to finish and Kaytee really hope you make it up to Scotland.
I had my final chemo today - woohoo!! So relieved this chapter of my journey is almost complete, and am almost looking forward to the side effects as I know there is an end in sight! Really chuffed that my bloods have held up throughout and allowed me to have the max dosage throughout - I feel reassured that I have given the nasty cancer cells the hardest time I possibly can, I know there are no guarantees in this cancer game but I'm happy with myself, and thanked Hubby for his dedication, he has endured every single hospital appt and chemo session with me and will deliver me to each and every radiotherapy session too!
How are you doing Flower79 and LucyLump, have through about you both alot through our shared journey
Love to all
Oh My Goodness, I am so pleased to have finished too. Such a relief. I know I will get the side effects over the next two weeks but I am counting down the days. I have an ultra sound on 29 October and then breast surgeon appointment on 31st. Think surgery will be around start of December. Also get 12 more cycles but only of Herceptin and as you say Flower side effects will be nothing in comparison to the chemo. Thank you for the information re the driving and definitely I will start with the exercises as soon as I can after the surgery. I was thinking of you too Flower as I was sitting there plugged in to the chemo machine! Today the district nurse came to give me my last Pegfilgristam injection too. Pleased they took away my folder, sharps boxes etc. Crochet-Helly, I am also booked on to a looking good feeling better course in November. I am 53 and have never been any good at make-up so maybe now is the time to start! I am looking forward to it. I have also signed up for 'Move More' which run by our local leisure centre jointly with MacMillan. You get 12 free gym sessions and they tailor it to your needs and have knowledge of cancer so it sounds like win-win. However I have never been in a gym in my life so it too will be a new experience. Thinking of you all. We are all getting there! Back in July October seemed such a long way away but we are making it! Sending love and hugs to you all. Xx
Hi All, I hope everyone is keeping up.
Crochet-Helly, I totally love understand you, I couldn’t wait the last one yesterday. Although I have another 12 to go, it will be only Perjeta and Herceptin with mild seed effects so they say. It is such a relief! I am with you regarding the weight gain, I just absolutely hate it. Bizarrely I am gaining and loosing 6-7kg every week. On week I gain, the other week I loose. Apparently it’s all water and my chemo doc said it takes up to 2 months to loose it all. So whatever you gained by now, you will probably start to loose it naturally after your last chemo.
LucyLump, how did it go yesterday? I hope all is good! I was thinking of you. As per driving after the surgery, it took me about a week. It started to do the stretching exercises gently after the surgery. It wasn’t a fun ride due to the axillary clearance both sides but I feel stating those exercises early shorten the recovery time.
I will have all the PET, MRI, CT, bone scan etc. done at the beginning of November again, then 6 weeks radio from mid November plus twelve cycle of Perjeta+Herceptin. Somehow I feel I am halfway through, fingers crossed.
I am thinking of all of you, we can do this!
How are you all doing?
I have my final Chemo on weds, and bizarrely I can't wait! Bring on the final session of pain, fatigue and tears!!
Despite being 39 I currently feel like a little bald, old lady, struggling to walk and motivate myself to do very much, cried yesterday when I tried to find 'something nice' to wear as nothing fits thanks to the weight gain.
Have booked on to a local Look Good Feel Better session mid Nov. Have been offered a place on the Moving Forward course too but the next one clashes with my Radiotherapy sessions so will see how I feel when the next course rolls around, hopefully once the Chemo drugs leave my system I will feel less useless/helpless etc.
Thinking of you all who have been on this journey with me.
dont worry about having a PICC line in. Takes about 45 minutes and afterwards i had very little discomfort. So easy having the chemo... no more cannula's... and taking bloods and having additional meds if needed.. i was very worried about having it done but was the best thing i did....
re Aveeno and radiotherapy... i used it regularly and applied it straight after my radio...
had no problem with my skin and didnt really have the tiredness some people experience.
hope i've reassured you a little.
mini mad xx 💖💖
Lmc, something similar happened to mai7 I think about the hand, please get your team to look at it to be on the safe side always best to get things checked out 😘💕💕✨✨shi xx
Hi LMC, it is good to hear from you. I am so sorry though that the chemo bag leaked on to you. I had a bag leak on me too but luckily it was herceptin and not one of the chemo drugs. Maybe you could phone the helpline about your swollen hand just to see if they have any advice. Thank you for the info re the driving. Hugs to you too. Xx
Hi all. Wow what journeys we are going through. I’ve had a set back in which the chemo drugs leaked into my hand so chemo had to be stopped. No more viable veins so have to have a PICC line on Tuesday which I am dreading. Then to pick up the rest of this chemo then one more left. My hand is still swollen so paranoid about it.
I then go onto radiotherapy. With the Aveeno did you apply this before and after the radiotherapy?
also driving, as soon as you are comfortable and safe to do so my breast nurse said. It was a while with me due to drains etc. Just make sure you go somewhere quiet and try an emergency stop.
Big hugs to everyone xxxx
Hi Lucylump, I had a mastectomy and was driving by about 7 days after, once the drain had gone and I was comfortable with wearing a seatbelt. After my lymph node clearance I think it was about a week again.
Ooh and also my eyebrows came back really quite quickly after chemo finished too, eyelashes as well. You'll be surprised... pity the leg hair joined in as well though!
Oh my goodness Flower 6 lots of docetaxel sounds awful. Thank goodness we have our last one next Friday. My eye brows have gone too. I can't feel any hair yet but I am really looking forward to it! Kip it is always so reassuring to hear from you. Thank you so much for looking after us all. You are a star. Can I ask anyone who has had an operation how soon were you able to drive? I realise it varies from person to person but a rough idea would be good. Xx
hi Flower, you are doing so well, last Docetaxol coming up.. yayyy.. have a big pat on the back for getting there. I had 3 x Fec and 3 x Docetaxol during 2018 and T was by far the worst bit I found. But I got there and the taste buds came back and the side effects faded. I found my hair started growing during the T part of chemo too, probably during the last bout, I finished chemo at end of September 2018 and had a complete covering by Christmas and now its thick and curly albeit grey!
Hang in there all of you, you are doing brilliantly!
Good morning everyone,
This is going to be my 6th round of Docetaxel along with the other drugs and I must say I very much looking forward to get over with it. As every cycle, despite of the high dose and extended course of steroids, I had allergic reactions during the chemo session when administering Docetaxel, this time three in a row but I pushed it through At the end. It set a record of having my chemo session for 10 hours. It is just awful but hey, getting a last one of it next Friday with LucyLump?
I must say nothing helped me with having so much air. The taste bud issues and mouth sores got more bearable after the 3rd round, however having bad diarrhea most of he days remained an issue. As neurotoxicity kicked in after the last round, and I really felt that I can’t take more. Now I feel more positive again but dreading this last one next week. I keep telling myself that when it is done, the hardest parts ( surgery + this part of the chemo sessions) are over. I do hope that radiation and the targeted chemotherapy will be a walk in a park compare to this.
As for eating pesto, bananas, grapes, mango juice and egg were the things that still taste fine on my worse days. 🙂
Also, it seems that my hair started to grow back a couple of weeks 3-4weeks ago. Did anyone experience something like that? It is like a baby hair, soft, thin and fuzzy. Not sure if it really started to grow back and I should let it be or it is just a new stage between chemos before it falls out again and I should shave it? Eyelashes are still holding on, eyebrows are nearly non existent.
Ladies, you are all fantastic, we are nearly there!!!
i found radiotherapy very doable compared to my chemo. I didnt get tired as lots of ladies do. I used Aveeno moisturising cream all the way through and had no trouble with my skin. Once you get into a routine , the laying still with arms above your head, it kinda becomes second nature...
pls dont worry about it.... you're doing the hard bit now..
mini mad xx 💖💖
Hello everyone - hope you all getting on as best you can?
I feel like I'm recovering quicker for chemo 5 than I did for chemo 4, thank goodness!
Still had pain but more managable but mostly my brain has gone to mush and affecting my ability to think rationally! And as for tasting anything - forget it!
I had meeting with radiology yesterday and should get appt for next week for CT scan and tattooing/marking ready to have 20 sessions over four weeks in November - the consultant said radiotherapy is a walk in the park compared to chemo - I hope she is right!
Thinking of you all
Thank you so much Silver Pixie. Sending you a hug too! Also adding random sours to my Sainsburys order before I forget. I have had dose 5. On this though there is very little recovery time between doses. Last time just 2 or 3 days. All worth it though. We will get there. Xx
Yes, me too .. belching and feeling yuk . Haven’t got a solution though, sorry.
The taste is awful isn’t it? I can’t summon up much appetite when my mouth feels dirty . I have been eating Randoms sours as they provide a brief respite and brushing teeth frequently. Are you on dose 4or 5 ? I’m on 4 and so want this to be done ... doxcetal is a real trial .. I feel sorely tested !
Anyway , sending you a hug as I know we’re all doing our best to get through this xx
Afternoon everyone. This docetaxil is hard work! Does anyone else feel 'full of air'. I have been like this for days and it was the same last time. Constantly belching and feeling sick. Any handy hints on how to reduce this would be very much appreciated. I have ranitidine and domperidone but neither of these are helping. Awful taste in mouth is doing my head in. I am so looking forward to getting this over! Xx
Hi Kaytee there are good hospitals if you need help in Inverness and Perth and a fab GP practice in Aviemore if you need any help. You would be about an hour away from a hospital in both directions. I hope you manage your trip but if not you will need to look forward to another time. There are not many chemists in the middle of the cairngorms though so definitely need to stock up on your crates of anusol before you go! Xx
Crates of anosol will help 👍I think the shares rose while I was on chemo 2 years ago, I got through tubes and tubes of it 👍 xx
Thank you Shi
I will definitely had a chat with the unit before making a decision.
Hi lucylump, supposed to be going just north of pitlochry in the cairgorms, so a bit out of the way.
Oh Kaytee, I am so sorry to hear about your piles. They sound awful. Where abouts are you going in Scotland? If it not too remote there should be lots of good help around if you need it. North West Highlands and west coast islands are pretty remote but even there there are systems in place to get everyone help as quickly as possible. I really hope you can manage your trip and enjoy watching the deer and have a special time with your family and friends. Xx
Kaytee just check with your unit if Scotland is one week after your last chemo and follow their guidance ❤️ They might tell you to have idea of where nearest trusts are while you are away just to be safe ❤️ 💕💕✨✨Shi xx
Iam on day 4 from docetaxel.
Taste buds defo on way out, lucylump I am also finding milk ok at the moment but I really have to focus and tell myself to drink something.
Starting to get achy legs now, but nurses said that's good cos it means the injections are working, so I am trying to remember that!!
Right now my worst issue is still to do with my bottom, have had a poo, but have really painful piles (sorry for the too much info 🙂 )
Last year before all this started I booked a family holiday in Scotland, 10 of us. It's now coming around and I am unsure if I should go. It's a week after my (hopefully) last chemo. I know I will not be able to do much but I love Scotland and am hoping I will just be able to sit and watch the dear etc.
I guess I will have to wait and see how I feel that week, but I am reluctant to admit defeat yet!
What do you think, is this unreasonable?
Best wishes everyone x
I am day 2 after docetaxel and taste buds already gone, went all emotional yesterday just because nothing taste nice, lol.
Last docetaxel completely knocked me out, I was really poorly so though am still kind of OK for now am really anxious because it's still early days.
Can't wait to put all these behind us. We are getting there 🙂
Morning everyone, hope you are all ok. Am on day 6 after 2nd docetaxel and a bit spaced out but otherwise managing ok. Last one with you Flower 79 on 18 October. Will be so good to get this out of the way even though there is operation and radiotherapy etc to come. Finding it really difficult again getting something ok to drink. Oddly todays OK thing is milk with strawberry nesquick! Really strange. I would not drink this normally but drinking anything is important so this has to do. Can't tolerate water, sprite or coffee any more. So looking forward to taste buds and most importantly hair coming back again. How is everyone getting on with their nails? Mine seem reasonably strong just now and I haven't put any nail varnish on them but am wondering if I should. Am moisturising hands and nails in hope this will help. Eyelashes still seem to be there but eyebrows virtually nonexistent. Thinking of you all and sending hugs. Xx
Morning Helly and all ,
I’m glad you’re feeling positive today after your drug changes for the next chemo. I had my 4th yesterday( doxcetral and Herceptin ) and like you am waiting for the side effects to kick as I feel sure they will ! Don’t the steroids leave you wired 😂I feel I could tackle all sorts but I think that’s not a good idea just yet !
Im on 80% dose because of my experience with excess vomiting on round 1 and they have decided to keep me at that level for now . As long as it works long term that’s fine with me .. like you its preventive as my cancer hadn’t spread although stage 3 .
Im just thankful to have got this far and have to say that regular input from you ladies has helped me along no end .. best wishes and hugs to all .. we ARE getting there ! xx
Good morning all,
Bit quiet here in our chat, I hope that means you are all ok? How are you all coping?
I had my oncology review mon and had a few meds swapped around to see if I can cope better for round 5 still maintaining the high docetaxel dose, I can have it reduced by 20% for the final one if it doesn't work.
They have swapped me to the one off white blood cell jab instead of the 7 day one, going to start cocodamols tonight and have been given a supply of nystatin, fluconazol and laxido!
I had 5th chemo yesterday which was uneventful, just how i like it so final one planned for 23rd oct if bloods hold out.
Lymphodema clinic today and then radiotherapy planning next week too.
Feeling much more positive and settled this time round... or maybe thats the steroids.....
Thinking of you all
Oh yes I agree with Shi, I used to suck ice lollies during Fec and T chemo, the nurses told me to and the hospital had a supply in the fridge. It should help prevent the burnt mouth feeling. I also used to use cooled boiled salt water regularly during the day, especially after eating and a teaspoon of good quality manuka honey everyday and let it sit on your tongue for a bit, that's supposed to have an antiseptic quality too.
I used to suck ice lollies during chemo fec, that might help. Please discuss with your team, they could prescribe you something more than just the difflam 😘hope you get this sorted ❤️💕💕✨✨Shi xx