Thank you Flower79 for your response, I mostly worried about the intravenous application because they are always having problems getting a vein so I was hoping to be done with that part but as it is perjeta can only be given intravenously and I was hoping to avoid the picc line.
I just feel down knowing this now.
Glad to hear you are doing good and managing well and thanks for your response once again, I really appreciate.
Kip: Thank you for looking after us July Chemo starters, your advice is very reassuring!!
Aww, Flower79 and Lucy Lump: I hope your ongoing treatment is going well, I'm not having the same treatment as you as my tumour was HER negative so just the initial lumpectomy, EC-T chemo which is all done, radiotherapy (6 down 14 to go) and then on to tamoxifen for 10 years for me!
Im doing ok apart from the lack of energy and strength and the night sweats, and my poor nails, I uncovered them earlier today and they have gone very thick, are bruised on the nail beds and I can see lines on them from each of the chemo's, so I have policshed them up again, no one needs to see that!
On a positive note I went to a 'Look Good Feel Better' session yesterday, I hadn't felt ready to before but Im really not a make up wearer, for my wedding it was just mascara and a bit of lippy so I wasn't sure what to expect. But I highly recommend it if you havent been already. You get given a make up back full of high end products that have been donated, and then you get shown how to actually use each product and leave looking like a normal person again, biggest thing for me was learning how to draw eyebrows without looking like Aunt Sally! You can find info here https://www.lookgoodfeelbetter.co.uk/support-advice/group-session/ about sessions local to you, and you just ring up and ask to book on the next session - you dont need to be referred.
Love Helly xx
I’m only getting Herceptin as well, as haven’t had Perjeta at all . But next Herceptin I’m having Zoledronic acid IV twice a year for 3 years to help prevent reoccurence in bones .
Had my last Docetaxel yesterday with Herceptin so feeling a bit ropey today :-) still last one so another target reached .
Radiotherapy starts in mid Dec plus hormonal tabs for 5 years . I really feel they are covering all bases and have been well looked after . Speak to your team and see what advice they have . Mine have quite happily answered all my questions , however daft they might have seemed at the time 😊
hugs to all you ladies still on this rollercoaster but we are getting there one way or another 😊👍🏻👏👏👏
Hi, I am really worried because I am not being offered Perjeta other than the 3 initial doses which went in with the last three chemo sessions. I am only being offered 12 addition lots of herceptin. I don't know if this is because I live in Scotland. Xx
Good to see you back! I had my surgery in June, and I am Her+ as well. I got Carboplatin+Taxotere+Herceptin+Perjeta for 6 cycles that I finished mid October. Now I am on Herceptin+Perjeta for another 12 cycles in every 3 weeks. They call Perjeta the ‘ golden drug’, and it is a game changer for us HER+ ladies regarding the reoccurrence. My cousin is an oncologist, and she said it is very important to get. These two drugs can be hard on the heart but your oncologist should check your heart function regularly.
I got my first Herceptin+Perjeta a week ago, and there were VERY mild side effects. The combo that they gave me before knocked me out for 10 days (I was still able to work nearly 2 weeks between chemo sessions), but with this one I didn’t have to take a sick day. I was just tired, I had slightly upset stomach for a day or two and some mild headache for two days. My muscle and joint pain got worse, but it is absolutely bearable and doesn’t effect my sleep at all.
This is the easiest part of my treatment so far. Starting radiation and hormone therapy in a week or two and I am pretty worried about them. :/
Congrats to get the hard part done!!!
How are we all doing, I am having my last Chemo today, thank God!
You see i am her2+, DCIS with micro invasion which had 1 lymph node involvement out of 14 removed for test.
Already had my suggery in May.
Had FEC for 3 cycles, then T for 4 cycle, last cycle today.
But I just been told by nurse I will continue with pertuzumah (perjerta) and Herceptin for another 18 cycle meanwhile I was only told previously about continuing only Herceptin for 1 year, I intend to discuss this with my oncologist, but wanted to know if anyone has the same treatment plan as I.
Waiting anxiously for you response. Thank you
Hello everyone, just been reading your woes after reaching the end of chemo. I remember them well. I think we are so looking forward to reaching the end of treatment that we expect the side effects to go as quickly as they came, unfortunately we have to be patient. The baldness, puffy face, no eyelashes look goes with a little time, once the steroids are out of your system that puffy face goes. I never realised how strange I looked until I look back at photos and see myself, I thought I didn't look any different! But I am just about 1 year post end of treatment, have a huge head of hair, almost jaw length, full eyelashes and eyebrows. The energy levels take a while, but build up slowly, your body has taken a big hit...I took up walking, just small to begin with and now do about 3 miles a day quite easily. I do still suffer with stiff joints but my nurse thinks that the menopause which Tamoxifen has brought on. Its not unbearable as long as I don't sit for too long. I swim and do yoga too. I gained weight over the treatment too, I am still a little overweight but its coming off and I feel much more like the old me. I found the mental side quite tough once treatment was over but I attended a Hope course from Macmillan with other people who had finished treatment. Just helps you to deal with the scariness of being back in the real world again.
My fingernails took about 6 months to grow out fully and become normal looking, toenails a bit longer but they are all ok now. I had watery eyes too, they quickly stopped once the eyelashes returned. I haven't noticed a problem with hearing but my eyesight is worse now - could be just age anyway.
Be patient ladies, rest up and allow your bodies to recover slowly.. and take some vitamins or supplements if you can (always check with your ONC team though in case they do not mix with the treatment).. I was advised to take zinc and calcium and glucosamine and choidritin for my joints. Now started swigging cod liver oil... OMG that is disgusting!
I am lucky that my nails have been ok at least so far but I do relate to nearly all the other things you are describing. My last chemo was three weeks ago last Friday. I have been surprised how tired I still am and also shocked at how unfit I have become. Walking up even gentle slopes is a real effort. I was also shocked when I looked at myself in the mirror with my glasses on! I am not liking the no hair, no eyelashes and no eyebrows look and puffy face. Today I started the move more class at the local leisure centre. Most of the others there had finished there treatments I think several months ago and they looked great so there is definitely hope for us too. I enjoyed meeting the other people there. I had terrible watering eyes last week but the lady in Boots suggested Visctears or something like that and that has pretty much sorted it out so I would definitely recommend going in to ask or getting something similar from GP. The other odd thing I have noticed is that my hearing is much worse. It wasn't great anyway but now TV sound has gone up from 50 to 60. I am sure these things will sort themselves out. Sometimes I do read previous months groups for reassurance on this and that helps too. Hope you feel better soon. Xx
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
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
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