*** January Chemo Club 2020 ***

Northerner and Yanyan, Blackcat, Mumof2, I'm now thrown into total confusion and need to get my head round the latest news.  I went in to see the Oncologist yesterday and visit with hubby.  Managed somehow to,get round to H&B for some cashew nuts, then Poundland and through Primark, had lunch at our favourite cafe, then went round the corner for the free shuttle up to the Oncology dept and it came sooner than expected.  Good, less time to start getting cold.  Went in, visited hubby for quite a few hours, then down to see one of the Oncologists team.  Told them about the pain I was experiencing and the peripheral neuropathy which was quite bad and forgot to mention it was down my back as well.  However, she said they would reduce this last dose.  Afterwards, I went home by taxi, in the dark and got in around 6.00pm.

So today, I struggled up to the garage, drove down to the local shops, got my baguette for the weekend and some bits of food in the butchers and the Co-op, then drove home.  Struggled home with the heavy stuff in a trolley, it was difficult getting the trolley up the stairs to my flat, but I managed it.  Then in the afternoon, I got a phonecall from the Oncology unit cancelling my Tuesday 2.00pm appointment for chemo and they said it was only going to be for a half hour for the Herceptin injection and the new time was for 5.00pm!  That means walking home in the dark alone again, which I'm nervous about, drat.  I also couldn't understand how it was only for a half hour, but the person I spoke with said there would be no chemo given!  Now I was confused.

I had visitors at 2.00pm but when they left around 3.00pm, I phoned the Oncology bookings dept back and was cut off, because they were so busy.  So I phoned the day unit reception, with the weekend looming, where I explained everything to them and they said they would email the bookings dept and get them to phone me back.  I later had a phonecall from them and I explained again, my problem.  Eventually, I had a call from the Oncologist herself to explain, she had decided that, with all the aggressive treatment I'd already had and the low grade of cancer my tumour was, that with the effects of the peripheral neuropathy affecting me that could become permanent, she had decided to stop the chemotherapy and from now on, I would just continue with the Herceptin injections for just over one year, go back to see the Oncologist in three months time and also, every three months have a heart scan to check all is well.  So, I have the answer to the cancelled, rearranged and shorter appointment next Tuesday!  But it's having to get my head around this when you are geared up for another round of Docataxel.  Don't get me wrong, I'm pleased that I now don't have to go through another session of that dreadful chemo, it's just a bit of a shock when you're geared up for it!  I was told I could go in earlier next Tuesday and get my PICC line removed too, hooray!  All this one month earlier than expected, so now I can concentrate on getting over all this experience, wonder when I can start drinking my green tea again.  Probably when my tastebuds recover, will ask when I get the Herceptin injection done.  So, freedom at last, I've finally emerged from that dark tunnel into the light somewhat earlier than expected, yippee!!

I do hope everyone else is doing okay, do keep us all posted.

Guiiella

I am pleased they have decided you are done with chemo as you have suffered so badly from side effects. It must be a massive relief

Mum22xx

It will be, once I get my head round this unexpected turn of events.  It's not really sunk in just yet, a bit like an anti climax!  Waiting for the euphoria to kick in, ha ha.

Great news Giuliella

I'm now 4 weeks since last chemo and starting to feel the difference . Been on wii machine this morning to start building stamina up again by doing steps . 

I was told mid to end Feb before chemo out of system . So enjoy the journey to the end of nasty SE but remember take time to get there still rest up when needed . 

Ive had one Herceptin last week and seemed to be not much SE bit stingy going in but Nurse said to warming it up first helps .

Same timetable as yourself Herceptin til Jan 2021 but I've also got Bisphosphonates infusion every 6 month for 3yr .

If I was you I would ask your unit if they have a earlier appointment if you nervous about the journey in the dark and hopefully they can accommodate you . 

Glad you out of tunnel,

margaret x

Hi Giuliella

It’s great to hear that you are now finished with the chemo, and don’t have to suffer any more of the horrible docetaxel side effects!  As Northerner has said, the chemo side effects can take a couple of months to clear completely, so don’t be concerned if they don’t subside immediately.  My oncologist told me that I might still experience a few (although much milder) docetaxel side effects for quite a few weeks after treatment, and she was right as I still get the occasional facial rash and digestive upset (I am 8 weeks after the last treatment now).  However my tastebuds have pretty much recovered and the peripheral neuropathy has more or less gone, so I think that docetaxel is finally losing its grip on me!

I am now two weeks after surgery (mastectomy and ANC) and had my dressings taken off yesterday.  The wound is healing well, and the scar long but very neat.  I opted not to have reconstruction, and am wearing my ASDA post-surgery bras with a softie prosthesis, which looks absolutely fine when in underwear or dressed.  I also got my post-surgery histology results from the surgeon yesterday, which confirmed what the post-chemo MRI had indicated: the tumour and the one affected lymph node had had a complete pathological response to the chemo, and there was no evidence of cancer left.  There was also no cancer in the remaining lymph nodes, of which I apparently had the high number of 39 (now none, of course).  

Due to the complete response to chemo and the fact that I have had a mastectomy and ANC, my surgeon told me that the multidisciplinary team has decided that radiotherapy is not mandatory for me, but that I can choose to have it if I wish as a “belt and braces” approach.  I have said that I would like to have it, as it seems sensible to take advantage of all the treatment offered to prevent recurrence (I will also be continuing with 14 more cycles of herceptin/perjeta infusions, and probably bisphosphonates in due course.  I have an appointment with my oncologist to discuss this next week, and also one with the radiotherapy oncologist at the start of February.   Radiotherapy is not offered in my local hospital (York) and so I will have to travel to Leeds, but luckily our local cancer charity provides a free minibus service to transport radiotherapy patients.  

I hope that your husband is doing well, and that arrangements will soon be in place for him to come home.   Now that you are at the end of the chemo, you will start to feel stronger and be able to see the light at the end of the treatment tunnel.  I hope that you will have a good weekend, and be able to relax and do some things that you enjoy.   Take care. 

Blackcat xx

Giuliella

Great news . You must be so relieved - your wish has come true ! I have heard if others who have escaped the final do I. My last treatment was reduced by 20% as a result of my side effects and it made it a little easier. Take care of yourself.

Blackcat20

Congratulations !  Getting the all clear is fantastic news. Good to hear you are recovering well from the surgery. And you are happy with the result. Well done. All the best.

Jojodot XX

Good news for you too Blackcat20 

I would be same as you and take whatever is offered " belts and braces " especially like me you trust your team .

My BCN rang me today to see how I was and have a general chat about how I was . She will keep in touch via phone whilst I'm under Onco but reminded me anytime I want to speak about concerns  just go or ring . Also put on calendar to ring in May to remind about annual mammogram as Onco dept. can forget . 

Glad you recovering well from surgery I upgraded from softy about six weeks after surgery but I do heal quickly . 

Keep well 

Margaret x

Giuliella how wonderful with regards to chemo. It must be such a relief.

And I’m also glad everyone else are ok too.

Ive got an appointment with my surgeon on Friday with regards to my future surgery, which feels a bit scarey. 
I turned the corner yesterday with regards to my side effects but two things I’ve been left with is the total lack of taste which is driving me mad and my constantly bleeding nose. My nose feels blocked, so I blow it and it bleeds again, then after a while it feels the same again, so I blow it ... and it goes on. But not being able to taste anything is truly awful. Hey ho, I guess it could be worse. 

Oh and I watched Cold Feet the other night. Fay Ripley is doing a grand job .... when she took her wig off .... I just cried for her! 

Northerner Margaret, yes I did say that I was very unhappy about the appointment time being so late, but they were not interested in altering it after cancelling my 2.00pm appointment for 5.00pm, so I've no choice.  I intend resting when I need to and listening to my body, I will let it guide me and pander to its desires, as it seems it knows more than my consciousness does!  I just wasn't prepared for the chemo to stop yet, so have quite a few unanswered questions now, like how long before I can resume drinking green tea and how long before my tastebuds recover.  I guess that last one I will get to know when it happens.  I might phone for advice next week, or ask when I go down for my Herceptin injection and yes, it does sting nastily when going in and it's not a quick jab either, worst luck.  Still, in the grand scheme of things, it's far better than the Docataxel SEs and no more filgrastim injections, yippee.  Still got the sharps bins and the district nurses paperwork at home, so will have to return that to them somehow.  Will take the sharps bins back to the hospital on Tuesday.  Looking forward to getting that PICC line out and no more weekly visits to have it cleaned, when they dig off any stuff that's gunging up on the skin around the line and it hurts, yippee!  Also will be able to have a shower without worrying over the PICC line getting wet despite the plastic sleeve I bought.  How about going back to using scented products instead of simple cleanser etc?  Can we do that now, or wait for a while longer, I don't know.  All these questions I will have to write down and ask next week.

Glad to hear you're doing okay too Margaret, and Blackcat, good to hear you're doing well too.  Funnily enough, talking of cats, on my walk back home with the shopping from the garage I saw a tabby cat I know and whom I've not seen for many, many months since my diagnosis and she came to check me out, rubbing round, though she didn't shout at me.  Must have been a sign of good things to come. She is almost the spitting image of a cat who used to greet me on my way up to the car on work days and whom I loved and she loved me, following me until I trained her not to get in the way of my car for her safety (I trained our old cat too, by voice command and repetition), but she died a few years ago now from kidney failure and I so miss her.  Wish we had one of our own, but travelling and at the time, working long hours meant it wasn't fair to have one and leave it in the flat alone, so we never did get one.  So it was nice to see this cat, don't know her name, today again for the first time in over six months.

Blackcat20 Thanks for your post and I'm so glad to hear all is going well for you too, congratulations on your emergence from the chemo and surgery.  You do know that the exhaustion/fatigue from chemo is the same with radiotherapy?  I had radiotherapy back in 2012 and it took me four years to get my fitness levels back afterwards, so here's hoping that it doesn't take that long this time round for me and not for you either, so good luck.  I bet you are so relieved.  Thanks for asking after hubby, he seems fine, had another chemo today and he ate lunch afterwards, so it looks as if his side effects are negligible thank goodness.  I'm excited about recovery and being able to start doing my hobbies again soon too.  Here's wishing you a good weekend and the journey forward, at least you now have peace of mind that the cancer has gone, same as me and we don't want it to come back ever again.  Thanks for your support, stay in touch on here, good luck with any future treatments you choose to have.