@GonnaGetThruThis This is brilliant news , so please for you and the family .
Here to the new year to start your next journey.
Got my follow up tomorrow hopefully have results back . Always a very scary time . Just trying to keep my mind occupied!!
Just going to wish you all a very merry Christmas 🎄. Thank you for always being on the other end of a message with support and advice . Love and bigs hugs to you all
Jennifer 🥰x
Congratulations @GonnaGetThruThis ! I am so very pleased for you. It will be a good Christmas this year!
I continue to have my Herceptin and Perjeta injections and have virtually no reaction to them, which is great. I am having my portacath out on Thursday. I’m feeling really good at the moment, so hoping that continues.
Sending love to you all. xxx
Ladies I have good news, well the best news actually.
I have just come from seeing the Oncology Dr and she gave me the pathology results after my surgery (and previous chemo) and there was no residual Cancer there at all!!!!!! I was hoping for this result as that is what they told me they could see on the scans but until they went in there to take out whatever they did then you never know.
I do currently have a seroma under the arm from the node removal (fluid buildup which is totally normal and common apparently) so we need to keep and eye on that and hope it natuarally reabsorbs back into the body and all going well, Radiotherapy will be booked for the new year.
I will be having 5 sessions plus between 3 to 5 boosters as apparently this is the new regime for TNBC and has been shown to work as well as 15 sessions. Bring it on i say!!!!!
@GonnaGetThruThis Glad op went well and that you are recovering well. I am having the same op after Christmas so it nice to know that you are feeling good after it. I hope all goes well with your meeting with the oncologist and surgeon next week. Will be thinking of you!
Thinking of you all
xx
@GonnaGetThruThis So pleased to hear it went well. I too had a long wait for mine and my op was from 2 till 6pm. I took 2 hours to come round so it was 8pm before I saw the surgeon who was very ready to go home by that point! I wish you the best recovery possible. I did the exercises they recommend and have had no ongoing issues with full movement in my arm (I had mastectomy and full lymph node clearance).
I hope everyone is well. I have nearly completed the Couch to 5K (one more run to go!) which has given me a real boost and I have the time and inclination to cook for myself now so am focusing on eating really well to feel good and I really notice the difference. Love to you all. xxx
Hi Siân @hopeful1974 , So pleased to hear that your six month check has gone well and that you are feeling well! 😊 Nice to know that we have that to look forward to!
Amazing what you learn being on this journey lol but all in the aid to make us better! I hope you don’t have to long to wait for your op.
Sending lots of love to you and everyone.
Anabel xxx
Hi everyone,
Operation went well although it was a very long day. There at 7:15am and only went in at 4:15pm as i was last on the list. Luckily I had my phone and a book. They did talk to me about the slightly higher/unknown risks of having just had Covid 3 weeks prior so i had a moment of panic but then just said lets get on with this. I had never had an operation before so it was all unknown to me but it was freaky how one minute i was chatting to the anesthetist in one room and then it was 2 hours later and a nurse was chatting to me in the recovey room.
Currently recovering fine (it was 'only' a lumpectomy with 2 nodes removed) and the first few days it was more irritation under the arm from the tape rubbing than anything. I was sent home with 3 types of painkiller but havent needed any.
Have an appointment with the Oncology Dr on Monday to discuss the results and next steps and then on Thursday with the surgeon to check it all out. At this stage I will have radiotherapy after christmas and more than likely be the 15 sessions. Lets hope that there is no need for the Cape after that but who knows......
Hope everyone is doing well and able to prepare for the Christmas period. Keep safe and well x
Dear @Heels to walking boots , I am glad to hear all is well and I am sure it will be nice to have a good Christmas before your op.
My 6 month check went well and the surgeon was really pleased. There is no evidence of any recurrence too, which was nice to hear. I am feeling really pretty good at the moment and have upped my exercise which is making me feel good (although not today due to the horrible weather - I’m lying down next to the fire!).
I will be starting hormone therapy at some point but I am having an op to remove my ovaries so it may be after that as Tamoxifen can cause DVT which apparently is risky for an operation particularly in the pelvic area! You learn something new every day.
Wishing you and everyone else all the best. I hope you are all doing well. Love, Siân xxx
Hi Ladies,
just checking in to make sure all is well?
@GonnaGetThruThis how did the op go?
my op is after Christmas which is both pleasing and frustrating, as I would like to get it over and done with. But at least I can enjoy Christmas with the family.
Thinking of you all and wishing you well !
Anabel xx
Hi lovely ladies,
Apologies too for being absent too on the group, i have dipped in and out to keep up on seeing how you are all doing and i do think of you all often and wish you well.
I finished chemo two weeks ago, (does feel good to say :-)) and have been hibernating and trying to get back to a sense of normality. I am due to see the consultant on Wednesday to discuss surgery, I am not sure what I will be having and I am assuming that I will need some kind of scan to see how effective Chemo has been. I guess not knowing has left me a little anxious but hoping that by this week I will have a clear path to the next steps.
@Flower123 hope you are recovering well from op and hope margins are clear !
@louby_lou69 I too had 9 Paclitaxel and I had no real side effects apart from feeling woozy and rubbish sleep. Also, I used the cold gloves and booties during treatment as, one of the side effects you can get it is neuropathy in your fingers and toes. So far, I have had no loss or tingling so for me it worked. It's not guaranteed but I gave it try as I had nothing to loose. (Thank you @hopeful1974 for the recommendation)
@GonnaGetThruThis Good luck for the op! Hope all goes well, will be thinking of you this week.
@hopeful1974 Hope all went well with your post-op check. Amazing how time flies!
@simplyeve Glad all has gone well with radiotherapy and you have finished, must be such a relief. How long will you need to have the injections for? Also, I hope all has gone well with your visit with the oncologist.
@Mum2boys Glad all went well with surgery, although does sound like it was a very long time for the op but the main thing is that they have removed everything that they need to. Hope margins are all clear. Sorry to hear you burnt your arm hopefully, it is healing and not too sore.
@Fairie Glad to hear you too are doing well after surgery..... so comforting to hear that all has gone well and is making me feel a little less worried about mine that is upcoming. My hair started growing back and it is amazing how fast it starts to grow....just watch! Although i am now white and grey lol!
Sorry if i missed anyone, am thinking of you all often. Sending you all lots of love and hugs
Anabel xxx
Well done Beth👏 Glad you’re through chemo and surgery and hope very much that all goes well from here.
I too had surgery end of October. Mastectomy. Healing nicely but still going in weekly to have a drain done. All painless and straightforward.
my hair is sprouting too! Things will be wild on my head shortly I can feel.
I too have dipped in and out of contact in this lovely group as and when I’ve been able to, but everyone I’ve read about and heard from stay close in my thoughts as we do this journey together.
lots of love to you Beth and all you lovely ladies ❤️ Fairie x
Hello everyone,
I'm so sorry I've been so absent recently and haven't been on here to support everyone. I've only read a few of the previous posts I've missed but I think we've all finished chemo now? Wahoo! Well done everyone! I can't believe how quickly it all went really.
I had my final chemo on 13th October and I got to ring the bell. My hubby and boys watched and it was emotional. I really cried afterwards with relief and gratitude. I've had so much support and kindness from friends and family and the nurses too - I'm just so grateful.
I had my surgery last week. I was really fortunate because the chemo was really effective and shrunk the tumour a lot. This meant I only needed to have a lumpectomy - I had a breast reduction and lift. Sadly I needed all of my lymph nodes removing too because they'd found cancer in them previously.
The surgery went well I think - except instead of being 2.5 hours, it must've have lasted at least 5 hours! I have an appointment next week to find out if the margins are clear and I am going to ask why it ended up taking so long! I'm recovering well though and healing nicely. I'm just in quite a bit of pain from the lymph node surgery - the swelling has increased quite a bit the past few days and with it the pain too. Paracetamol and ibuprofen are only slightly helping. I accidentally burned my arm too from a microwave wheat bag! I didn't realise until I noticed 2 blisters on my arm 🤦♀️. So have to keep an eye on that too now.
My hair is just starting to grow but it's very fine and fluffy at the moment.
@GonnaGetThruThis have you recovered from Covid? I'm so sorry that you caught it - must be the last thing you wanted. I hope it hasn't been too bad for you.
Sorry it's so long everyone! But I really you're all keeping well.
Lots of love to you all ❤️❤️ Beth xxx
Hi everyone
@Flower123 I'm so glad your op went ahead and hope you have a speedy recovery and you get clear margins so you can get your radiotherapy plan. I have my last one of 15 tomorrow and it has been so much easier than the chemo. I do have some redness and tenderness around my surgical scars but it's not as bad as I was expecting, I also get to see my oncologist tomorrow and hopefully he will confirm everything has gone well.
@GonnaGetThruThis I hope you have recovered from Covid and just wanted to wish you good luck with your surgery, I had my lumpectomy in march and my ANC in April and like Sian found them doable, though had a drain for the ANC so took slightly longer to recover than the lumpectomy itself.
@hopeful1974 I'm glad your Phesgo injection went well, I didn't realise you had the injection with your Chemo, I was given my herceptin and perjeta intravenously whilst I was having my chemo and had to push a little to get the injection, though now I have been told that a private company will be taking them on and I will be given them at home and someone will contact me a couple of days beforehand to arrange it, I'm not sure I'm completely happy about this as I feel I will be losing contact with my team, but i'm sure in reality it will be fine.
Hope everyone else is doing well and continuing to improve. I'm pleased to report my hair is finally starting to grow again though its still very fine and looks as if it might be white. I also have my flu jab booked this week and my covid booster on Sunday, fingers crossed I don't start to feel unwell from these just as I'm getting back to some sort of normality!
Stay safe and well everyone, much love to all. xxx
@Flower123 I’m so pleased to hear your op went ahead in the end and wish you all the very best for your results. I hope you have some nice distractions to take your mind off the wait!
@GonnaGetThruThis My thoughts will be with you next week. I found the operation quite doable. I found it hard not doing much physically after it but got used to that. I am seeing my surgeon on Wednesday for my 6 month post-op check. Can’t believe that!
I have been feeling really good lately and my Phesgo injection didn’t give me any side effects, so I am feeling happy for now. xxx
Thanks for your reply, that's good to hear. I'm hoping I have no side effects too.
@louby_lou69I had 9 Paclitaxel after 3 EC and honestly i didnt have any side effects at all. Treatment day was a bit of a blur as the pre-med antihistamine made me really drowsy but apart from that i woke up the next day feeling fine. The worst part for me was and still is rubbish sleeping. It was definitely worse during the chemo time but still bad now.
Hope everyone else is doing ok. I am now 5 weeks finished chemo (god that feels weird to say), was supposed to have had my operation 2 weeks ago but got Covid 3 days before so it is now on next week tuesday. Luckily everything was just postponed 3 weeks. So it all starts again on Thursday with a visit to the surgeon, saturday for pre-op checks, monday for guide wire and mode dye then tuesday is the day!
@hopeful1974 @Hello , yes operation went ahead on Friday , had to stay in overnight but came home sat . All went well just a bit sore but got good pain relief. Just got to wait for results now to see if clear margins this time .
Hope you are doing well and thanks for asking after me
big hugs 🤗
Jennifer xx
@louby_lou69 I had 9 paclitaxel 3 of those with carboplatin. No I don't have herceptin.
Louise x
@Flower123 Did you have your op in the end? If so, I hope it went smoothly.
@simplyeve I hope your radiotherapy continues to be ok. I was pleased to find that I didn’t have many side effects from the Phesgo. I had had 6 of them already, but always with chemo on the same day, so this was my first without the chemo. I have had looser bowel movements than usual, but apart from that have felt great. I am very glad as I have to continue with them until the end of June.
Everyone I know seems to have Covid at the moment so I’m being a bit more careful than usual, but it feels like it will only be a matter of time before I catch it!
Sending love and hugs to you all. xxxxx
Thank you so much for your reply. How many paclitaxel did you have? Did you have Herceptin too?
Lou x
@louby_lou69 I finished my PC last week and the paclitaxel is alot easier. I have been tired and as the weeks went on it got worse. The week I had both drugs I spent couple days on settee, couldn't drive anywhere. Other side effects are numb toes, feet, fingers and upper arms. Also mouth feels horrendous can't taste anything, it's dry and nose is always bunged up. So they are giving me artificial saliva to try. Hope all goes OK for you.
Best wishes to all
Louise x
Good Morning Ladies
I hope you are all doing well as we come to the end of our chemo and start on the ne69 xt stage of journey.
@louby_lou69 I am sorry I can't advise you on paclitaxel, like hopeful1974 I too had docetaxel and carboplatin with the herceptin and perjeta, hopefully one of the ladies who had the same treatment will respond to you soon.
@Flower123 I hope everything goes ahead for you tomorrow too and will cross all my fingers and toes, I understand exactly how you feel as eleven years ago I had a hysterectomy and the surgery was postponed twice in quick successsion and by the third appointment I was so stressed I was on anti-depressants and had developed a chest infection, which my GP gave me extended antibiotics to ensure I recovered in time and I was really concerned the anaesthetist wouldn't want to proceed with the op, fortunately she did and the op went ahead, but stay positive and don't be frightened to tell them how much stress this is is putting on you. Also huge congratulations on the 👶🍼 news, it's soo exciting isn't it and yes it's early days but the lift you get with the thought of meeting that new little person is the best you can have.
@hopeful1974 Good luck with your first Phesgo Sian, I had my second one yesterday, and am feeling so much better, I did get taste changes but think that may have been caused by the final chemo as my magnesium levels was still low after my blood test on Tuesday and I had to have a 6 hour infusion before the injection yesterday and now have to take magnesium tabs daily again. Just one word of advise, make sure they have plenty of freezing spray for your leg, the first time she put loads on and it was not too bad, yesterday she only gave it one spray and it wasn't as good an experience, but still totally doable!
I hope everyone else is coping and recovering well. I am now two thirds of the way through my radiotherapy treatment and use my Aveeno cream morning and night without fail, I have also been advised I can use it as often as I like and can use it before treatment if necessary.
Well must dash off for next treatment and it's a 45 minutes journey there. Take care and much love to all.
Yvonne xxx
@hopeful1974 Good morning,
I have been told to come in tomorrow for 7.30 and the anaesthetic will make the final call. I have today of antibiotics. I feel so scared it is not going to happen again and will get sent home . It is just a waiting game I suppose, not good for the mental health side !
On a very big plus side my middle son and girlfriend gave us some amazing news I’m going to be a grandma . Very early days ( 8 weeks )but they wanted me to have something positive to plan for .
Hope your keeping well and get stronger physically and mentally each day .
Thinking of everyone and take care
Jennifer x
@louby_lou69 I didn’t have Paclitaxel - I had Docetaxel and Carboplatin. I personally found them easier than EC, but I do know that everyone is different so it is very hard to predict. Generally, I have heard more favourable reports about Paclitaxel than about Docetaxel or EC, so hoping you’ll not find it too bad. xxx
@simplyeve I’m very glad to hear the radiotherapy is going ok and hope that that is still the case this week. This Friday, I have my first Phesgo injection without the chemo so that will be very interesting! xxx
@Flower123 So sorry to hear about your cancelled op. Will it be going ahead this Friday? xxx
Hi ladies, I've jumped over from the October monthly chemo board and thought I would pick your brains.
I've just finished my last of 3 EC and am due to start 9 weekly cycles of paclitaxel next (with Herceptin every third week). I found the EC hard, but easier than I thought - if that makes sense. EC I've just suffered with fatigue, nausea, one bout of vomiting, heartburn and a sore throat. all pretty well managed with meds. Weeks 2 & 3 after treatment I was pretty much back to normal.
Im just wondering what to expect side effect wise with the Paclitaxel. I've heard it's slightly more bearable but does come with its own side effects.
Any words of wisdom please. Thank you
Lou x
Hello glad your radiotherapy is going well . Listen to your body and map if needed .
I had operation cancelled yesterday. Temp to high and said better to wait and be safe . Of course I was very upset as so wanted it over !I Woke this morning with tender ear this morning been bit achy for about a week but got checked in hospital when I was last in so went to get checked out again and have got ear infection on antibiotics tablets so hopefully this is the cause of temp time will tell .
They have book me in for next Friday if well enough see how each day goes .
I hope everyone had a lovely weekend
Jennifer x
Sorry to hear of your problems Ladies,
@GonnaGetThruThis I hope that you are able to get over Covid quickly and your op is able to go ahead in three weeks. It must be so frustrating to think of all the treatment you have gone through and now to come to this delay.
@Flower123 I hope you too are recovering and that you have been able to have your op today, if not then I'll keep my fingers crossed it won't be too long before you get a new date.
@hopeful1974 my goodness Sian, that must have been so painful, but thankfully you didn't swallow it and cause damage to yourself internally.
At the moment I am getting on well with the radiotherapy though do find I am needing a nap in the afternoons. it's a 45 minutes drive to my treatment centre, then the treatment itself takes about 15 mins and then we drive home, my husband takes me, as parking spaces can be hard to find so he stays in the car.
Hope everyone else is keeping well and wishing you all a good weekend.
Love Yvonne. xx
Huge hugs to you too, Jennifer. That sounds stressful. Keeping everything crossed that the op can go ahead.
I’m recovering from chemo slowly but surely but had a setback yesterday when a shard of glass went through my tongue! It was in a dish of food my mum had prepared for me and must have come off the glass dish she used. It was such a shock! It did stop bleeding eventually but felt very sore overnight so I took paracetamol. The nurse said tongues mend really quickly so hopefully today will be ok. Not what I needed on top of everything else. Nowhere near as bad as your problems, though, @GonnaGetThruThis and @Flower123 . Sending you both love and best wishes for the coming days. xxx
So sorry to hear this very frustrating for you . I so hope you done have a bad time with Covid .
I was also suppose to be having operation Friday BUT still waiting to find out if going ahead as I have been back in hospital with a very high temp Mon / Tue on iv antibiotics. They did lots of test and think it is viral. Hopefully find out today or tomorrow.
Sendjng love to everyone
Jennifer xx
Woohoo! Congratulations @JessicaB! So pleased for you - a huge achievement. I hope your side effects wear off quickly and, as you say, it is the last time! 😘
@GonnaGetThruThis Oh no! That is so annoying for you. Covid seems to be more around than ever and for us, that is particularly frustrating. Do you feel ok? Sending big hugs 😘 🤗
Just before I rang the bell!
On Thursday 28 October I finally got to ring the bell too. It felt great to do it - emotional and euphoric and I cannot thank the staff at Boston Chemo Suite enough for all their help and support. Over the last 10 days the side effects have set up camp again, so in my head I keep saying, 'this is the last time' (fingers crossed).
I have phoned the Breast Clinic this afternoon as no one seems to know what happens next to me. I had a mastectomy in April and now need reconstruction. My Oncologist told me I need to call them to start discussions about it. So that's what I have done. I need to get informed about my options so if anyone has any websites that are useful that would be amazing.
I read all your posts and send out positive vibes for those having a tough time. xxxx Jess xxx
Oh no @GonnaGetThruThis that is rubbish. I hope you feel better soon. I had heard in our area they take three months to reschedule after COVID so perhaps that's some consolation that its still quite soo but I know if you are hyped up to go in, its hard having it cancelled.
I felt frustrated at the start when my chemo was delayed before I had even started and the final one, when it was pushed back a week. Hugs to you.
xxxx
So wanna hear some rubbish news?
My operation is booked for tomorrow and I have bloody COVID!
I have gone though the whole pandemic without being the slightest bit ill and now this happens.
Hospital has called and said they should be able to reschedule for 3 weeks time.
@simplyeve I am feeling pretty good too, thanks. Definitely tired but turning the corner after my last chemo. I’m so glad to hear you are feeling better too. I also asked about a scan and I was told that I won’t have one as my cancer is ‘too early stage’ so I felt a bit reassured after that. I know what you mean about being up and down emotionally and not quite knowing how to feel. I think that it will slowly sink in that I am through the worst and regaining some sense of physical well-being will be good. I should be starting on tamoxifen soon - not quite sure when actually - and hoping there won’t be side effects. If there are, I am told there will be other options such as anastrazole or letrozole if I have my ovaries removed (something which I will probably be having done soon as I have a large long-standing ovarian cyst).
I have actually signed up to the Breast Cancer Now Moving Forward course as I feel like it’s time to think about that now, given that I will be receiving the Phesgo injections until July next year but as the side effects should be less, I’ll hopefully be able to return to a bit more of a normal life, whatever that is!
Sending lots of love to you and look forward to keeping in touch as we continue with our treatment. xxx
Hi Sian @hopeful1974
I am feeling so much better now thank you. I have to work on my overall fitness, but am managing to do much more and it really is lovely to wake up and feel a little more normal each day.
I didn't realise you were having your targeted therapy by way of an injection, I have been having mine by infusion whilst I was having Chemotherapy, luckily I have been able to change to injections now, I have also started my Anastrazole tablets this week and have some calcichew tablets as well. Tonight was my first radiotherapy treatment and I only have 14 more to go, so I do feel that life is improving daily and thank you so much for your good wishes.
It's also interesting to hear that your hair is regrowing, I hope mine will start to grow back soon too. I love the photo of you ringing the bell, unfortunately they don't have a bell in Wrexham, though I did get to fist bump with the nurse who gave me my first treatment by way of celebration.
It's a really emotional time isn't it? You're so glad you've got through it but at the same time still worrying that there is still some tiny cell hidden away somewhere that's managed to evade all the treatment. I simply can't quite let myself believe that the treatment has done the job, I'm sure we all have that element of doubt and only time will help us to overcome it. I asked my Oncologist would I get a scan of some sort and was told no, but I should check myself regularly.
I hope the rest of your Phesgo treatments go to plan, I have 11 more to go so will finish them in June all being well, when will you finish yours?
I do hope you are not feeling too many side effects after your last chemo and hopefully you'll feel better each day like me, in the meantime stay safe and well.
Much love Yvonne xx
Ok great! X
@simplyeve Dear Yvonne, it is so good to have your news but I’m sorry to hear that you had a hard time after your last chemo. I hope and pray that things will be easier for your from now on. xxx
@BabyBunting I have had 6 Phesgo injections now along with chemo and my hair has been regrowing throughout - it is now over an inch long. I didn’t cold cap either, so am pleased! xxx
Thank you so much! Xx
Hi @BabyBunting
I'm sorry I can't answer you question re cold capping with phesgo as I haven't cold capped at all. As far as I understand it Phesgo is a combination of Herceptin and Perjeta and whilst it does say Perjeta can slow down regrowth I don't think it is supposed to actually cause hair loss. I have tried looking on a few other sites and cannot find anything helpful, I suppose the treatment is too new.
Good Luck with the treatment.
Yvonne xx
Has anyone experience of phaesgo only with the cold cap 🧢? I think herceptin thins your hair but I’m not sure. I’ve kept most of mine with the chemo and cold cap but I don’t know whether I still need it now on phasego only x
Hi Fairie
Thanks so much for the reply, it is good to know that you are recovering from the Chemo and despite having to finish it early you are coping with the Phesgo injections and finding them more tolerable, will you have to have radiotherapy as well?
I hope you are recovering well from your mastectomy and I will take your advice and allow myself time to recover gradually.
Stay safe and well gentle hugs.
Yvonne xx
Hello simplyeve x
Bless you you've had such a lot going on whilst being on your own personal journey of treatment and surgery.
im glad you are being kind to yourself and giving yourself time to heal. I had to finish chemo end of July and I’m only just beginning to feel more like my normal self. It takes time.
I had subcut targeted therapy in my thigh last time (10th Oct) and for me it took 5 mins and had to stay for 4 hours to be monitored. It was fine. They told me next time I’ll stay for two hours and gradually the time will lessen for waiting.
Take good care and time dear Yvonne x
Fairie x 🧚🏻♀️
Hi x
just had my mastectomy and I was nervous which is natural, but once surgery is done it’s such a relief. You’ll be drinking the tea and eating toast feeling relief soon lovely
lots of rest after important
Fairie xx 🧚🏻♀️
Stay steady babybunting 💪🏼👊🏻
Xx Fairie 🧚🏻♀️
Glad nothing to worry about x
i think we are all on hyper alert for anything else lumpy or bumpy or painful.
I just had my mastectomy and before that I had convinced myself there was a lump on the opposite side collar bone. Surgeon checked and and said no it’s nothing!
I think ( from previous experience of BC 15 years ago) this being so alert settles slowly.
it’s totally understandable.
Fairie xxx🧚🏻♀️