I wanted to share the amazing news I received this morning - my biopsy showed a complete response to chemo! Nothing left behind at all in the tissue removed from surgery, nothing in the lymph nodes, the chemo completely eradicated the cancer and I am now cancer free! I don’t know how to feel right now though - this was the response I wanted and I’m happy and relieved but also really sad and much like I couldn’t fully process that I had cancer when I was diagnosed back in July, now I feel it’s going to be hard to process that I DON’T have cancer. I almost don’t trust the news if that makes sense? Such a wealth of emotions right now.
I still have treatment to go, I have my radio scanning appointment at the end of the month and then 9 rounds of radiotherapy. My transtuzemab now can be done over 9 appointments rather than 19 thanks to my results and I’ve already done 5 of those and I’ve had bloods drawn today to see if I’m in menopause which will help decide on how long I’ll be on Tamoxifen. So the end to active treatment is in sight, I can’t believe it! And the awful chemo has been worth it!
@louise15 brilliant news, makes all that nasty chemo worth it. I was told before I started chemo that I was cancer free and it does feel strange. My chemo and radiotherapy were to stop the cancer coming back, I will be on Anastrazol and Bisphosphonates for a few years as well as Herceptin injections every 3 weeks until October next year. Think all of this is because my cancer was grade 3 and HER 2 positive.
@louise15 such good news to hear that you are cancer free. It certainly makes all the chemo worthwhile.
After I had my final chemo on Monday, I thought I’d get a f2f appointment with the oncologist fairly quickly. But I’m only getting a telephone call with his registrar on 6th February, and not actually seeing him until 25th March. I haven’t been made aware of any scans or radiotherapy appointments so slightly in the dark as to what is happening next. Hopefully I’ll be told at some point. I feel like everything has been great with treatment up to this point, but now feel a bit let down. This could be because its day 4 after chemo and its always the worst day. I’ll hopefully feel better by the weekend after reminding myself the chemo is over. Best wishes to everyone xx
@pips12 I believe it’s very common to feel like that at end of chemo. That said knowing dates and what’s next is very important. Best to ring re radiotherapy as it’s often a different team than the chemotherapy team. I had to chase mine up as I hadn’t heard. Result was a scan next day!
If it helps I had only a phone call with a nurse just before last chemo. They said standard care was a discharge booklet in the post and no f2f at all. I was told after last chemo that I would not expect to hear again from the oncologist at all. Depending on what hormone treatment is next there may be little input needed. I understand from blogs and patient experiences that this blunt end to interaction can be one of the hardest part of the cancer treatment experience. Even though I was told what to expect (one call) and thought it made sense I still found it a bit upsetting. As you say the chemo does not help with that.
I found over the next few weeks I quickly felt brighter. I hope that happens for you too.
Woohoo @louise15 that’s great news . I was like Dianne3 and had surgery before chemo, so knew I was cancer free back in June. It feels like a lifetime ago! So all my chemo and radiotherapy is “preventative” to make sure it doesn’t come back, Though my Mum can’t get her head around that and seems to think I’m yet to be told I’m cancer free, even though I’ve told her I am!
I’m now through 10 out of 15 radiotherapy and it’s going ok, I’m a bit tired but it’s more like when you’re doing something, then suddenly stop and think “blimey I’m tired” and then carry on doing whatever you were doing . I am definitely having to keep up the shoulder shrugs and rotations to keep the stiffness at bay.
I just booked another wee break this time with my Mum at Easter - think I might be in danger of getting carried away with breaks this year but I think we deserve it after the nightmare that we’ve been through, so I’m determined to make the most of my time off work this year as much as possible.
Oh, on my weekly video call with my Mum and sister last night, they said my fingers and face are looking less puffy . I’ve not tried my wedding ring back on yet, but it’s nice to know they can see a difference - the weekly catch up means they notice more than we do here at home on a daily basis so it’s nice to hear what changes they see
Aww congratulations on finishing chemo @pips12 ! Well done. But so sorry to hear about your young cat, and your poorly husband. Shingles isn’t pleasant, but hopefully he’s well soon. I’m sure with knowing no more chemo, you’ll be feeling “normal” a lot quicker too! x
I thought it was all going too well - my next two Herceptin injections which are numbers 4 & 5 of 18 have been postponed as my recent MUGA Heart Scan came back at 49% and the lowest it can be is 50%. I have been given a prescription for Ramipril and a referral to cardiology. I’m really worried that this break in my treatment will reduce the effectiveness. My Oncologist said that she would arrange for another heart scan in six weeks. Will I have to start the Herceptin again or just carry on where I left off. If my heart function doesn’t improve and I can’t continue with Herceptin is there any alternative. I’m really worried
Aww Dianne, I’m sorry to hear that. Your feelings are completely valid, I would be worried about these things too. I would try to be reassured that the oncologist will be doing whatever is in your best interests for your health & they likely will have experienced something like this before so should have the knowledge that taking the break is better for you even if that means maybe starting again. Can you speak to your breast nurse to ask if it Will reduce the effectiveness or if there’s an alternative should you have to switch?
With it being the weekend and you being unable to reach the breast nurses for answers, is there anything nice you can do for yourself over the next couple of days to try to ease the worries in the meanwhile or to act as a wee distraction?
This whole journey can certainly take a toll. Sending you lots of love
I waited a while (almost 8 weeks) following the end of chemo before seeing my oncologist but I had surgery within that time (4 weeks post chemo) and then seen the oncologist another 4 weeks later so I had a wait too but I think the surgery was the reason why I had that wait. My oncologist had also told me at my last appointment with her that I would be back in January to discuss radiotherapy so I wasn’t in the dark around that so to speak. And I have seen the chemo team twice since last chemo for phesgo injections so I’ve had some contact
I will say, I was fine for appointments following chemo as I had pre ops & scars and stuff to do pre surgery but post surgery I didn’t have anything until my biopsy result & check in appointment and that felt hard, I felt a bit in the dark and alone as all I have known for months is regular appointments. Though, I contacted my breast nurse team to say I was struggling & they had me in for a cuppa and a chat very quickly.
I hope that you can get some answers and hopefully start to feel a bit brighter over the next few weeks. Remember we’re all here to vent to as well
It’s funny, naturally I’ve just assumed that everyone wasn’t cancer free like but of course for other people whom chemo wasn’t first port of call like it was for me then you would be cancer free! Yeah for me, the chemo was the starting point so I’ve spent all that time thinking “has it worked?” and it has
Radio and my targeted & hormone therapies are my preventative therapies. It feels wild in my head thinking I’m doing this stuff but don’t have cancer any more, but equally anything they ca give me to stop it coming back I’m going to take!
I’ll bear in mind to keep doing the shrugs and rotations once I start doing chemo
I’ve started planning wee nights away recently, I feel like now I know I’m cancer free I am more comfortable doing that. So I plan to be like you and make the most of my time!
It must be so nice for you hearing things like that from your mum and sister, as it’s hard for us to notice these things in ourselves. I had a colleague in work yesterday tell me I had my colour back and that was nice to hear because I’m pale anyway and chemo just made me even paler
Hugs from me too @dianne3. I honestly don’t know what the alternatives to herceptin are, I’m in line for abemaciclib and letrozole, so different drugs completely, and I think for different things. But please try not to worry (easier said than done!), they will do what is best for you, and as I was told very early on in my journey they want to keep you alive! So won’t do anything to put you at risk. Like Louise said, you won’t be the first person that this has happened to, and there will be tried and tested ways of dealing with it. I know that doesn’t really help, but hope it goes some way to reassure you before you can speak to the nurses xx
Evening ladies. I’m just wondering how everyone’s nails are doing? Mine got sore on the Docetaxel and both my big toenails started lifting, but fingernails were fine. Now I’m post chemo and I’ve been having issues the past few weeks, and several are lifting it seems it can happen post chemo I’m just really disappointed as managed to keep nice nails all the way through. I know in the grand scheme of things this is nothing, I’m just wanting a moan and to see how everyone else’s nails are doing
I stopped using polybalm but ive started again so hoping that will help!
HI Ladies, sorry not caught up in a long while, needed some quiet head space after Christmas. @louise15 how are you doing? Wonderful news about your clear results I am thrilled for you. On the nail front, I didn’t use Polybalm (purely because of the price) but have stuck to the Sally Hansen cuticle oil throughout this and my nails thankfully have stayed good. It has a nail polish brush and I do toenails and fingernails every night before bed and they’ve stayed strong. Although discoloured a bit which I can deal with. It’s about £11 in Boots I think and lasts months. Did you have to ask for a menopause bloods to be done? I’m wondering if I can do that as I’m 48 now and sure I was probably peri before diagnosis. I haven’t had a period since last August!
I had my post mastectomy results on Thursday and I’ve been given a clear result thankfully. They said the surgery confirmed that the chemo had got it all. Out of 21 lymph nodes removed, 7 had been originally affected but they could see it was gone. I have to admit I am struggling with my arm since. Have been doing my exercises daily so they’re referring me for physio as I need to have a higher reach ready for 3 weeks of radiotherapy and also will be finishing the Phesgo course. Haven’t been wearing my fake boob (foob as it’s now known) as my scar is still healing. Thank goodness for winter and baggy jumpers, my sons have not noticed.
Is anyone having the genetic testing? They’ve decided that I’ll have it done due to mum and 1st cousin on maternal side having had BC although possibly different kinds. This will give weight to my argument to have the second one removed if I want, but they have said if I don’t want recon, then they could do it for symmetry.
@pips12 Congrats on finishing chemo, wonderful news. Hope your husband is feeling better soon. Were you advised to have the shingles vaccine at all?
@dianne3 Sorry to hear about the delay due to the MUGA. Maybe speak to a BCN on here for some reassurance on the Herceptin. I’m sure they’ll be able to help or go back to your Dr.
Hi all, @emma-jayne nobody has mentioned about getting the shingles vaccine, I was told to just isolate from hubby, separate towels etc, and wipe down surfaces after each use by us both. I’m 66, so I have considered getting the vaccine but as its still early days after finishing chemo and I have a terrible record of reacting to every vaccine I’ve ever had I will probably talk to oncology team before getting it done. Hubby has been very fortunate in that the rash hasn’t blistered.
Thanks for all the info from various people. I’m going to contact my assigned breast nurse, who is a lovely Scottish lady with a very calming voice and ask her about the length of time I’m waiting to see oncologist.
Yes I too have noticed my fingernails are dry, ridged and growing at weird angles. So glad you mentioned toenails I forgot about those. I have the Sally Hansen nail and cuticle oil which I am going to use. I also use Working Hands, hand cream during the day and a lovely lavender, mint and marshmallow (Boots own brand, and smells delicious) foot cream at night as my skin has completely dried out.
Are any of you still having a taste problem. I have a horrid aftertaste lingering after food. Hoping it will go in the following few days.
I’m so happy you’ve also been given the all clear! How are you finding accepting the news? I feel it took a few days for it to sink in for me, and TBH just feel I’m maybe starting to fully accept it now. I’ve just been sent all my radiotherapy dates this morning.
I’m 44, and I believe (at least in Scotland) that they only do the blood test to determine if you’re menopausal if you’re under the age of 45 but not sure if since we’ve had cancer treatment that they would do that at any point. For me, it was needed to determine if I was menopausal so they could decide what hormone treatment to do. I have to say, it’s wild knowing I’m post menopausal as I was looking at my tracking app and I logged a period in September - apparently that’s how quick chemo can throw you into menopause!
I’ve been having my nails done through all of this but going to take a break so I can properly treat them with the polybalm. They look awful just now! Discoloured, some are lifting and I have a couple of lines going through them. Yesterday I was upset but now I’m just like, it is what it is! Not worth my energy getting upset about it!
I just had the shingles vaccine yesterday, and I’m not feeling the best today - slight temp, feeling sore and very tired (I normally don’t react to vaccines) Though apparently younger people react more to it according to the info leaflet I got with it. Just letting you know if you usually have a reaction, best chatting through with your oncology team.
No awful taste for me anymore, that ended a couple of weeks after chemo for me thankfully! How long post chemo are you?
I hope you get some reassurance from your Breast nurse when you speak with her
. I was like Dianne3 and had surgery before chemo, so knew I was cancer free back in June. It feels like a lifetime ago! So all my chemo and radiotherapy is “preventative” to make sure it doesn’t come back, Though my Mum can’t get her head around that and seems to think I’m yet to be told I’m cancer free, even though I’ve told her I am!
. I am definitely having to keep up the shoulder shrugs and rotations to keep the stiffness at bay.
it seems it can happen post chemo I’m just really disappointed as managed to keep nice nails all the way through. I know in the grand scheme of things this is nothing, I’m just wanting a moan and to see how everyone else’s nails are doing