Thanks Sal. Yes it bloody hurt!! Good luck with your makeup session today. I’m booked in for one in May x
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@chellebelle the Herceptin is painful, all the nurses have said if it hurts more than you can take, they will slow it down. For me, I just grit my teeth and chat to distract me. It’s not nice but you know it needs to be done. 
@pinklizzie1 i didn’t have lymph node spread but was informed that small amount of cancer cells can be present in the blood and the chemotherapy should deal with them. I have thought about those that only have surgery and radiotherapy and don’t have this back up. I suppose in the NHS there is a balance of prevention and cost. I don’t believe there is any extra screening for recurrence or other cancers. I did talk to the breast care nurse about a lump I had at the bottom of neck, which didn’t change shape or size with chemotherapy, that it’s probably grizzle/fat. If I’m worried they can get a doctor to look at it. I was given a BCN leaflet about ‘After Breast Cancer treatment:What now?
It has a section signs to be aware of. I think it’s down to us to flag up if we feel there is something wrong.
Docetaxel and Phesgo (see comment about Herceptin). take care of hand feet and nails, paint them if you can (www.lookgoodfeelbetter.co.uk) course are great. Take anti sickness when advised, if it doesn’t work for you ket your team know, they can swap them. Rest and let others help you. I was on Paclitaxel and need loperamide (Imodium) as it caused 
Eat as healthy as you can. Oral hygiene, salt water rinse or Corsodyl (can stain your teeth). I avoided any live bacteria (yoghurt,kefir) and ensure everything cooked thoroughly ( no pink steak) on advise but some others have been told differently. If in doubt check with your team.
@salbert hope you have a good day at your look good feel better course, you’ll get some lovely goodies and will look fabulous. Will you be taking the cowboy hat 
.? ( yes is saw the pic on the other thread…very fetching)
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@chellebelle - I’m so glad you have booked that course. I couldn’t believe how amazing that bag of goodies was! It was also great to chat to ladies in the same boat and at the same point in treatment as me. I had a lovely afternoon.
@naughty_boob - Funnily enough, I didn’t take the cowboy hat! 
Also on the subject of chemo, while I was really disappointed at the time when I found the cancer was in 2 lymph nodes, I now feel fortunate in that I am getting washed right through with the chemo. I agree with you that it’s a kind of back up. Thanks for the leaflet link. I’ve just read it. It’s funny but I’ve just started to worry about when treatment ends and recurrence. I guess it’s all part of the journey.
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@salbert
I’ve just returned from a wonderful but very tiring day at www.pennybrohn.org.uk they had their first well-being day for menopause. Met lots of lovely ladies and was given some helpful tips. The charity is based in Bristol but offers the courses for free (donations if you want) and they have overnight accommodation for those people who live further away.
Many of us expressed our concerns for what next, how will we be monitored (generally not!) and the difference in treatment around the country.
I’m sure the cowboy hat will make another appearance at some point!
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Morning you lovely ladies,
I’m on the Dec 23 thread and have just found this one!!!
I’m triple positive and about to have round 5/6 of TCHP today, been awake wired since 4am thanks to the pesky steroids, I hate them with a passion, I’m literally so wired, like a million tabs open in my brain at a time, feeling like a coiled spring yet body is exhausted!!!
Chemo has been bearable so far, I’ve been cold capping and still have most of the hair on my head @salbert i had loads and I mean loads of shedding after round 2 and thought “here we go” but I still have a full head of hair, it’s deffo thinned a bit but o have a lot anyway so partying it stays……
Eyebrows, lashes and those pesky pubes are all gone, but I can deal with that……
I’ve been having the herceptin alongside the PICC infusions and will need another 18 rounds once this finishes, then a lumpectomy and radiotherapy before reconstruction……still a long way to go which overwhelms me at times….
Got MRI on Monday and already dreading that, I had a full on panic attack last time as stupidly went on my own, in a funny way it was a positive as o fell through the door of Maggie’s in absolute bits, not sure I’d have gone in otherwise?
So any tips for keeping calm appreciated! It was the face down, tits akimbo that got me, I was proper panicking and couldn’t catch my breath……trying to do all I can to think happy thoughts but I’ve had a few nightmares this week about getting trapped so I know it’s subconsciously on my mind……aaargggh
Anyway, sending you all lots of love and healing vibes xxxx
Hi @mrsbee2
Welcome to the group.
The MRI for me was to check for the size of the tumour I found and it found another tumour in the other breast. So I’m bilateral invasive carcinoma with a grade 2 and grade 1. I’ve had chemo, continue with Herceptin which knocks me back a few days every 3 weeks, Zoledronic acid infusion due soon and Letrozole.
I started using Headspace app recommended by www.pennybrohn.org.uk and the breathing techniques and mindfulness helped with MRI. Compared to other MRI I had for my wrist I felt less anxious as I could see under the table I was on as my head rested on an open pad like a massage table. The boobs hanging is just weird. I also took a CD of music I liked and that helped.
Take care and keep in touch
@mrsbee2 Hello! Great that you’ve joined us. I love my forum buddies. I don’t know where I’d be without you all. Doesn’t bear thinking about actually. I hate those steroids too. They are pure evil if you ask me. Even with an 8th of the dose I had the first time round (when I turned into Mrs Crazy of Crazyville) I was still wired. It’s just horrible to feel like you are buzzing but exhausted. My team have reduced mine to the minimum dose now. Can you ask?
I LOVE that cold capping is working for you. I have had 2 rounds of EC and have started shedding now so I hope I am like you and retain enough to just look like it has thinned. I cling onto any stories like this as it gives me hope. It’s bad enough watching my roots come through and not being able to whack the hair dye on them.
I also have to have chemo until July, mastectomy and reconstruction in August and then radiotherapy and continued Herceptin for goodness knows how long. You really start to understand why everyone talks in terms of a cancer journey. It sure as hell isn’t a mini break!
Maggie’s centres are great, aren’t they. I’m sorry to hear you have another MRI on Monday. In terms of techniques to stay calm, well… you name it, I’ve been doing it. Are you able to ask for their headphones? When I had mine I was given some which were supposed to be playing country and western but either they weren’t working or machine was too damn loud. Worth an ask. I’ve also been using apps like our friend @naughty_boob I use the Calm app and The Tapping Solution. I do deep breathing, meditation, walking and prescription drugs! 
Between them all, I’ve made it through so far with only the one complete meltdown which was entirely due to the evil steroids. @naughty_boob is full of good advice and links and leaflets so I’d go with anything she suggests. Talking of which, I must check out this Penny Brohn stuff. I’d never heard of her. I’m increasingly thinking about how we are monitored once we reach the end of treatment as my cancer never showed up in scans or mammograms so I worry that could happen again.
Still, I don’t want to end on a negative note so instead I would like to share that our camper van has passed its MOT!! Yeeeeesss!! Even if I feel like a sack of sh*t, at least I will be able to do it in a lovely field somewhere over the next few months. Minus the wine at present but all minor victories are victories nonetheless at present.
Love to all
Sal
xx
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Shelli lovely pink lady friends,
I too haven’t posted on here for ages although I have had an occasional read. I feel I’m somewhat further along my journey now than some others. I did the chemo first: 3 x EC then started 4 x 3-weekly rounds of Docetaxel & Phesgo. That was July - Nov. Lumpectomy surgery just before Christmas inc all my left armpit nodes removed. It’s 2 weeks now since I finished 10 days of radiotherapy. The Phesgo keeps going - so far had 9 in total out of 18 doses, so half way. I calculate an early Sept finish. New to my life are daily letrozole tablets (dr says for 10 years) and Ibandronic acid for 3 years. I thought popping a tablet would be easy after everything else, I already take daily thyroxine for an under-active thyroid, but both have proved much harder to adjust to than I expected.
It’s nice to have a hair covering again albeit very short.
For me Phesgo hasn’t hurt too much. Just one nurse was a bit less gentle than the rest. I always get given the vial to warm up in my hands before it’s injected. I do however get horrendous diarrhoea a few days after each shot 
.
In terms of people worrying what after, that has played on my mind a lot too recently. The oncologist has pointed out that staying on the Phesgo means I stay under the hospital for a lot longer than a non-Her2 +ve patient before being cast out in GP land. But my liver enzymes are out of range & don’t seem to want to go down. . On bad days I convince myself the cancer must be in my liver too, but I’ve no other symptoms and the oncologist isn’t bothered and says it’s just a late effect of the chemo. I’ve never been fully scanned, but did have a full response to chemo. It’s so hard to know what’s best.
I’ve loved our Maggie’s and the look good feel good course. My nails are still wrecked. I really didn’t pay them enough atttention during treatment and am paying the price now. I have to be patient as the chemo grows through.
As for the letrozole that plays havoc with sleeping although I guess I admit @salbert not as much as the steroids did. Ibandronic acid has to be taken on a very empty stomach first thing then no eating or drinking for 30 mins & stay upright for 1 hour. I’m really missing the first cup of tea in the morning that used to get me going! I guess these are all a small price to pay for keeping well in future.
Keep putting one foot in front of the other ladies. We are all warriors and I’m so grateful for this Forum to keep us in touch.
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@suedot Helloooooo my friend. Lovely to hear from you as always. I cannot help but notice the time you posted. I take it that the side effects of all the treatment are still keeping you awake.
My news is that today (Day 24 since first chemo) I had my first major hair shedding. I had to wash it and it came out in droves. In a way there was a kind of relief as it’s been hanging over my head and I was worried that if it didn’t happen, then it would mean that the chemo wasn’t working. Now I know it is. My wig lady never contacted me back so I have filled in the booking form of a hairdressers that does wigs locally and my friend who has already been through breast cancer treatment and who got her wig there, is coming with me. I have the Headwear, Wigs, Brows and Lashes Virtual Workshop booked for this Tuesday and I think it will probably be in the nick of time.
My husband is half-Scottish and spent a lot of his childhood living there so is currently shouting so loudly at the rugby that it is making me jump. I’m going to retire to the bedroom and read a book in peace.
Hope you’re all having a good weekend,
Sal
x
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Nice to hear from you aswell. I’m 12 weeks post chemotherapy and 8weeks post radiotherapy and sleep is a big problem. Not sure exactly what is causing it, sore ribs from radiotherapy, post chemo, Herceptin or Letrozole. I’ve done 2 months on Letrozole so hoping in a month or so some of these side effects will lessen, although I did read/hear an oncologist say it could be up to 6 months to settle 
I don’t know about you but the Herceptin knocks me back 4/5 days now I’m having it alone. After the last one, the following day I was so teary feeling sorry for myself as I felt so rough.
Did you do the Moving Forward course? I’m sure I read you were booked on one. I haven’t booked one yet as I felt I’m still in treatment but as the weeks go on I feel a bit better about looking forward. I’ve even booked a few days away in May, the anniversary of being told I had cancer so I can do something nice.
@salbert sorry to hear your hair is shedding and you were let down by the wig lady. That’s all you need. It must be so nice to have a friend who understands your situation and is going with you to your new hair/wig appointment. It makes such a difference with others that have been in a similar situation. They get it.
It’s good to hear from you @naughty_boob and learn I’m not the only one with sleep and other issues when chemo, surgery & radiotherapy are all behind us. This weekend marks 3 months since I finished chemo.
I am pretty sure my erratic sleep pattern is the letrozole. There are many similarities to my menopausal years e.g. I wake up with a hot flush, it’s harder to drop off & in the day I’m far more emotional and potentially drawn to tears than I have been for several years - even when I learnt of my BC diagnosis.
I am very privileged where I am in Leeds in that the Leeds Cancer Charities ensure that everyone in treatment that leads to hair loss is entitled to a wig free of charge. So I have the one I was given- generally they try as hard as possible to match it to hair before treatment. However, I have to say I didn’t wear mine very often, just a handful of occasions. I never felt confident in it and was mich more comfortable in scarves and turban type headwear. But we’re all different.
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@naughty_boob I haven’t done the moving on course yet, but plan to do so in April. Or the month after. I think it should be good. It takes place at our local Maggie’s.
… and my Phesgo injections: now I’m having these alone it’s easier to pick out what the side effects are. UsuallY the actual injection is fine but I had a less gentle nurse last time, by her own admission. Anyway the side effects are a day or two of the most horrendous diarrhoea, when I most certainly need to be working from home!
I’ve just been sent my latest heart scan date too. @naughty_boob are you having these regularly while you are on Herceptin?
Take care, and everyone else 
As you said it nice to know it’s not just me. Yes the diarrhoea is the same on Herceptin. I am having MUGA scans every 4 months, last one was 4 January. I had to chase the results in March, everything was ok. I hate that I have to chase,but every time you have a check you want to know the results. They said they would contact me by phone or letter and I think a 2 month wait is too long.
I recently met a lady who chose to come of Letrozole as the symptoms were so debilitating she said he quality of life was effected. I been told it’s the gold standard of treatment to prevent the cancer coming back so I’m want to preserve and hope the symptoms lessen in time.
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Hi Suedot I hope you’re ok hun , it’s a tough journey and just when your totally shattered and your body is feeling at its worst after treatment there are the dreaded meds , Letrozole with the awful fatigue and ibandronic acid combined with any meds is a nightmare wow that was me 2years ago 
I’m so much better although I never thought it would come
My ibandronic meds where changed to a transfusion every 6 months
Which is 10 mins treatment so much better, I struggled coz I have a 3 year old and I’m diabetic, I find it’s an easier option ,
I’m a very positive person and always look for a better alternative to fit my life as things can get tough and drained energy is just crap , be kind to yourself preserve energy to use where you need to until you start to feel better, we do move forward because we are stronger than we realise
Laughter is always the best medicine my unruly hair has grown like ken Dodds twin sister 
but I have hair
Take care lovely
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Hi Naughty-boob
Still giggling about your choice of name ,love it .
The wait and chasing is just awful there’s enough going on but we cope I had my herceptin injection and a male nurse pressed a plaster on top to make it stick well I nearly jumped through the roof 
we live and learn
I hope your doing ok stay strong and keep plodding on
Lots of love xx 
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Hi I too have been directed here by naughty boob.
I had breast cancer in 2020 when i just needed lumpectomy and radiotherapy. Sadly new primary found Oct 23. I have had 3 lots of surgery finally having a mastectomy.
Just had a port fitted and start chemo Monday 25th Docetaxel and carboplatin with herceptin 6 rounds then herceptin for a year.
Not looking forward to this journey.
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Hi @rec Well isn’t that just crap. I’m so sorry to hear that. So you are like me in having had a load of surgery only to be told you will need a mastectomy. I’ve just had round 3 of EC then it will be 12 x weekly Paclitaxel. Mastectomy planned for August then radiotherapy and ongoing Herceptin. You must feel so disappointed to have to go through it all again. Well…we’re all in this together and we will see each other through. I love how so many ladies stick around long after it’s over and cheerlead others. What a great community. At least this time you will get Herceptin which is such a wonder drug. Well, welcome to our thread. It struck me that I have only posted the headwear that my relatives have sent me ready for when I lose my hair on the February Chemo Starters thread and that I really should show you all as well. I’ll find the pics and post them here.
I hope you all have a lovely weekend no matter what stage of this journey you are at.
Love Salbert
x
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So this was the cowboy hat my mother gave me for when I lose my hair on the grounds that ‘It’ll be fun’. 
As if getting breast cancer isn’t bad enough!
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