Kip
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Re: June 2018 Chemo Starters

Oh dear Georgie, fingers crossed you perk up and avoid that hospital visit... take it easy...

Kip

xx

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Posts: 116
Registered: ‎30-06-2018

Re: June 2018 Chemo Starters

Good evening lovely Ladies,

 

Had my first herceptin yesterday.

 

The nurse kept telling me there are no side effects, but they were keeping me for 6 hours 'in case.... ' 

 

When I got home I felt really sick, had a sandwich, which I forced down, and went to bed.  Was very nauseous and had a temp as well, plus diarrhoea so stayed there until this morning.  

 

A friend came to me to pick me up for T chemo round 1, and said that I seemed really breathless again. 

 

Got to hospital, but they were not happy with how I seemed.  Onc decided I might have a chest infection..... so no chemo for me today.  Ended up with 2 litres of fluid, and oral antibiotics to go home with.  Was given the choice to stay in, which I declined politely!  Had to promise to go to A and E if I wasn't feeling any better over the weekend.  

 

Love to all 

 

Georgie xx 

 

 

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Registered: ‎03-04-2018

Re: June 2018 Chemo Starters

So Had paclitaxel number 11 today. In and out very quickly because I didn't cold cap this week as I have a horrible sinus headache due to my cold and couldn't face it.
Kip
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Re: June 2018 Chemo Starters

Wow so much information to take in, thanks Reddi and everyone else.   So perhaps I will find out my recoccurence numbers when they decide upon which hormones.  I know I am 8/8 ER+ but nobody mentioned progestrerone rating??  I guess that follows that they just focus on the oestrogen.  I only ever get told I have the "most common" form of BC and the nurse always says "that's really good" as if that makes me feel any better!!  I'm trying not to think too much about reoccurence and just get through the next op and then the Rads but it keeps popping into my head so not sure if I could deal with knowing the chances??  I'm a bit of an ostrich really!

Good luck for chemo girls today.. hope they all go ahead regardless of colds and peeling feet.  CDC I use Flexitol on my feets, its a cream which diabetics use but you buy it over the counter and it contains urea and is fab for dry cracked feet.  I suffer terribly with cracked feet and this really keeps it at bay.. doesn't smell that great though!

Kip

x

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Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Will give those a try. Thanks x
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Re: June 2018 Chemo Starters

Ooh I typoed Vaseline. ...it's making my eye twitch.
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Re: June 2018 Chemo Starters

HI,

Re the E45 I find it dries my feet out a bit more. I use vasaline intensive care or a special foot cream, nice a greasy called Palmers cocoa butter formula which helps.
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Re: June 2018 Chemo Starters

Just googled those trials Sally. They do look interesting. Might ask my onc whether i’d Be eligible after my mastectomy.
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Re: June 2018 Chemo Starters

Hi Sally It’s so reassuring to hear that despite the peeling they haven’t stopped your chemo.  I’ve been told they’ll have a proper look at my feet tomorrow and decide what to do   I think I need to up my moisturising! Did they prescribe something for you to use? I’m just using E45 and some Berts Bees stuff specifically for feet.  

I hope your bloods come back  ok.  Horrible being so snotty even when not having chemo.  Hope you feel better soon and fingers crossed you can get another chemo ticked off tomorrow.  I’ve had a bit of the sniffles but no temperature.  If anything my temp is a little lower than usual.  

 

Interesting to hear about the studies.  I’ve not heard of either of them,  Had a look at the Cancer Research list of studies yesterday and I wasn’t eligible for any of them.  Having two tumours makes me ineligible for some of them.  I would be very interested in taking part in a study, not just for my own benefit but to improve treatment in the future and reduce risk of recurrence.  I suppose being part of the 100,000 genome project is something.

 

Have a good night xx

 

 

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Re: June 2018 Chemo Starters

Hi CDC,

I've had the peeling on paclitaxel but only on my feet which I moisurise 3/4 times a day. It's not stopped my chemo at all. I do have a stinking cold though but hopefully my bloods will be ok tomorrow to go ahead. I'm not ill, just very , very snotty. No temperature at all, I've been checking regularly.

Had a copy of an oncology letter today which says I'm for consideration of two studies, PALLAS and MONARCH E. so it'll be one of then I'm for but I'll find out more at next appointment.
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Re: June 2018 Chemo Starters

Hi all
Such informative posts. Thank you.
LJ I think Grade 3 means it’s faster growing so even with a smaller tumour they would want to remove it as soon as possible. So glad you’re going to have your holiday before radiotherapy starts. Great your oncologist was understanding.

Reddi Good point about the immediate reconstruction before radiotherapy. At one point I was definitely going to have radiotherapy but that was before they decided I needed a mastectomy. Now I’ve no idea!! Lots of questions next time I see the Proff. Kip it’s a hard one to know whether to find out about risk of recurrence but initially it would have helped to decide to go for a single or double mastectomy. Now my cousin has been diagnosed I’m pretty sure I’ll go for a double now.

Interesting to read about the tamoxifen and zoladex because I’ve been told I’ll have both! So confused!

I’m getting concerned that my chemo might be cancelled tomorrow as the skin has started peeling off my toes and balls of my feet. I’ve got no pain whatsoever so I’m hoping it’s just a delayed result of the Docetaxel and Hand/Foot syndrome and not related to Paclitaxel. Don’t want a delay however small as I’m desperate to move on to the next stage of treatment!
LJ
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Registered: ‎12-06-2018

Re: June 2018 Chemo Starters

Gosh, loads of posts for me to read!  I've already had surgery which removed the 12mm grade 3 lump with clear margins and no node involvement - presumably surgery was pre-chemo because it was so small! But that's supposition. Chemo was recommended because of the HER2 result.  

 

Just had a good appointment with Radiotherapy oncologist. She was very understanding about my holiday and I will start treatment afterwards which has made me very happy. 

 

@georgie-gee - things I've found about T which might be useful for you.... Pain prevention medication is better than painkiller, I've had Naproxen, something similar might be good for you. I've also been taking an anti-histamine with Loradatine as the active ingredient which apparently helps with bone pain from Herceptin and the injections. Sleeping with a pillow under my knees or between my knees has really helped with supporting the joints and easing them. Even moving around at the speed of a snail helps!  As always warm baths help too.  I've found plain water and raw vegetables leave me with bad indigestion, as if they're just sat there!  A stuffy nose has kicked in from about day seven which I believe is Herceptin related, but worth being aware of.

 

LJ 

 

Highlighted
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Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

[ Edited ]

Last post for today, promise! (I'm hijacking! Got on a little research tear this morning.)

 

Hormone therapy decisions -- e.g., tamoxifen versus Zoladex -- are also guided by risk recurrence scores, per this review of the history of therapies for breast cancer. In particular, the fact that the doctors have said they are leaning toward ovarian suppression with Zoladex plus an aromatase inhibitor for me aligns with my presumed higher risk of recurrence associated with pre-menopausal synchronoous bilaterial breast cancer of different types. Another factor for me is my history of pulmonary embolism: tamoxifen is associated with higher incidence of thromboembolism. (If you're interested in more, see this meta-analysis from April 2018.) So Zoladex, AIs, and bisphosphonates (to guard against higher incidence of osteoporosis) make sense for me.

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Re: June 2018 Chemo Starters

p.s. @Georgie They also set my T at 75% dose (versus max dose based on body surface area), as I'd been in hospital (febrile neutropenia) and twice on antibiotics (once for suspected cellulitis in my arm) during FEC. I also had a 2-week delay between FEC and starting TPH because of elevated liver enzymes.

 

Thought I'd mention as I know you had a hard time on FEC in terms of infection/isolation-room stays. I also had a hospital stay during cycle 1 of TPH -- but it seem to have been the effect of the antibiotics more so than the TPH. (Now on day 7 of cycle 2.)

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Re: June 2018 Chemo Starters

[ Edited ]

@Georgie Ah, I was so focused on your carpark incident, I missed that you're starting Herceptin and docetaxel. You did FEC first, yes? In my experience -- and of course we're all different -- I've found Herceptin and docetaxel to be more tiring than FEC, and I get very insistent muscle, bone, and joint pain.

 

I don't know how much the pain is due to the chemo, the HER2 drugs, or the GCSF injections, but I've found the Monday and Tuesday after the Friday cycle to be my low-energy points -- basically, the 3 days of steroids keep me going, and when they're out of my body, I really do feel it. Ready for bed at 9pm; feels like I have to drag my legs to walk up to the high street. By Wednesday, I start to regain energy.

 

I do try to get some walking in every day, though, as it helps with both the pain and the fatigue. My OH and I even managed a (gently paced) 10-mile walk in Harrow Weald on Sunday. (I craved it as I didn't get to take walks the previous 2 weekends -- which got my mood down and my weight up.) More generally, I aim to do a couple miles each day during week 1, if I can.

 

Good luck today and tomorrow! Fingers crossed that you don't have any reactions and do have minimal side effects.

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Re: June 2018 Chemo Starters

@Kip One other thought on recurrence risk scores: some people find them helpful, some don't. And they aren't the whole story. At my hospital, there's a woman who does reflexology for cancer patients -- she was diagnosed with "inoperable" breast cancer 17 years ago. She had a chemo regime that is a "generation" or two older than what we're getting today; I don't think they even tested her for HER2. Eventually, they went forward with a double mastectomy. She is still on hormone therapy, and will be for the forseeable future. Her first reconstruction failed; her second one, about 10 years ago, is lovely -- I can't see the scars or any differences in skin tone. And: still no evidence of disease at her latest monitoring appointment. 

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Re: June 2018 Chemo Starters

[ Edited ]

@cdc To be honest, my conversation with the oncologists about whether chemo would reduce the chance of recurrence was basically tabled once the FISH test came back with HER2+ for my right breast IDC. Because the HER2-targeted drugs have only ever been trialed with chemotherapy, that result meant neoadjuvant chemo for me.

 

Now that I'm well down the pike, I have realized that I should have asked more questions about chemo and the left HER2- side. It's a mucinous type invasive cancer, which is rare -- meaning there's also less known about it. From what I had read at the time of the treatment plan presentation, I understood that pure mucinous cancers (90% or so of the cancer cells are floating in / surrounded by pools of mucin, a key ingredient in mucus) are slower to spread, so I didn't worry much about it. But since they've said my mid-chemo MRI was "stable" -- no growth, but no shrinkage -- I've done a bit more research, and I wonder if I should have asked to have the left lump removed pre-chemo, since ER+/HER2- tumors with no lymph node involvement typically aren't very responsive to chemo. Of course, surgery on the left breast would have delayed the start of chemo, beyond my already long 70+ days between diagnosis and treatment. Since the right side is larger and has extensive DCIS and possibly LCIS in addition to the IDC, shrinking that side with the HER2-targeted drugs is the focus. I just have to find peace in that "stable" result and think of the chemo killing off any cells that try to break out. 

 

From what I know, recurrence risk scores for bilateral breast cancer are entirely guesswork. The US breast cancer surgeon I spoke to back in May suggested that synchronous bilateral breast cancer increases the risk of recurrence by some unknown factor. Having different types of tumors, as I do, increases it much more -- they think. There are just too few cases to be able to say anything statistically significant. I am totally expecting them to say that they have no idea how to run my case through NHS Predict or another algorithm. 

 

@Kip Again from what I know, risk of recurrence for local/regional breast cancer -- meaning in breast and nearby lymph nodes only -- depends a lot on the receptors found in the breast. Early ER+ breast cancer typically has better than 50:50 odds of recurrence, if hormone therapy is taken, since it can be taken for many years. Some of the women sharing recurrence scores on other threads are mentioning figures like 80% or 90% predicted survival/no evidence of disease at 10 years (basically the furthest out they can predict because treatments continue to evolve quickly) -- and getting an extra 1% to 3.5% from adjuvant radiotherapy. But recurrence chance depends entirely on the specifics of each individual case -- tumor size, tumor grade, receptors, KI67 status (which I don't know), extent of lymph node involvement/micromets, chemo regime, etc. It all gets plugged into the algorithm.

 

@cdc I got progesterone receptor results for my biopsied tumors (left 4/8, right 6/8), but right now most hormone therapy is focused on estrogen. Apparently, having a strong PR score and a strong ER score  means your tumor will likely respond more strongly to this therapy, because they are linked. See: https://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-po...

My breast cancer nurse told me outright that because I am ER+, my PR results had no effect on my treatment plan. 

 

One thing on immediate reconstruction: I've been counseled that if I need radiotherapy, I should very seriously lean toward delayed reconstruction. First, it takes longer to heal from reconstruction, and you can't start rads until you're healed. Second, the radiation can cause changes in both the skin and breast tissue that affect the reconstruction enough to require a new reconstruction later. (There's at least one study that suggests reconstruction complications are not significantly affected by radiotherapy, but doctors tend to be cautious.) It's frustrating, as my psychological preference is for immediate reconstrucution -- to get it done and to avoid yet more surgery -- all the more so since they advise waiting about 12 months after rads before having delayed reconstruction. But thought I'd mention it in case it hasn't come up yet in your conversations, as there may be some pushback on immediate reconstruction if they want you to have radiotherapy to, say, the chest wall and you agree to that course of treatment. 

 

@Georgie UGH! The car thing is a drag. Glad your insurance company is stepping up. 

Kip
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Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Oh dear Georgie Gee not what you needed is it.   Glad you are getting the car sorted though and I guess as you say it pales into insignificance with everything else.  Hope the PICC is all ok and that chemo goes ahead to plan.    

CDC - I haven't seen what box my ONC ticked, but as they keep saying "belts and braces" I am guessing its curative (or telling myself it is anyway)... they've not mentioned anything otherwise.   All I know is its Grade 2, 55mm and had micromets in first 3 nodes and that I would "benefit" from chemo.. whatever that means. My surgeon was pretty adamant she wasn't expecting to find anything in the nodes they are removing, but that its preventative.  I also haven't been given a number in terms of reocurrence... nobody has mentioned anything about it, on the one hand I would like to know but on the other... not sure I could get it out of my head if it was high risk?   I did read somewhere where somebody quite wisely said "we all have the same risk... 50:50.. it either returns or it doesn't"  which I guess is quite right.  Tingly is still tingly... although not quite so bad, or I have just got used to it, its just sort of numb and then every so often I get pins and needles feeling in  hand and up arm but it goes in a few seconds.   It doesn't affect me doing anything so if it stays that way I can put up with it I guess.  Larry tongue is all but gone and taste buds back which is fabulous but not helping with the attempt to eat healthier as I now want to eat everying I couldnt taste before!

Its good to hear you haven't suffered with sickness on the Paxitaxel, thats a bonus, will you get the red face on every one?   The tiredness still continues for me, although I do feel pretty good otherwise and am attacking the hula hoop every morning again...my jeans were getting tight yesterday so I need to do something!!

My OH has a friend at work who's wife has just been diagnosed with BC (the third lady in his office since my diagnosis!) and I couldn't stop thinking about her last night.  She had her first appointment yesterday where she got the dreaded news and is now waiting for an MRI scan before her treatment can be planned, she is still waiting to find out if she is HER2 aswell, it took me right back to April and that awful day...its so sad to think every day somewhere people are getting told they have cancer...my hubby talked to her OH and told him its the worst time at the beginning.. but I remember not believing it when people told me that so I could only imagine how she was feeling.   Made me feel sick to the stomach to think about.

Well at the least the sun is shining here, washing is out and chocolate muffins made....more calories for me to eat... take care all and good luck for chemo tomorrow.

Kip

x

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Re: June 2018 Chemo Starters

Oh No Georgie Gee. What a morning! Glad that the PICC line was redressed and hopefully you don’t have an infection. Wonder what the white fluid was. Antibacterial I presume. I know a broken car is a relatively minor complication in the grand scheme of things but it really isn’t what you need at the moment. You’re insurance company sound helpful. Hope it gets fixed quickly. Also it’s a shock when something like that happens so please take it easy today. I’m now a Friday chemo girl so will be thinking of you tomorrow. Just off for my blood test today. I’ve been very lucky that I’ve not had a problem with my bloods so far so should be fine today. Just don’t like having to wait around, The unit is extremely short staffed and I usually have to wait an hour or two to be seen for what a 5 minute procedure!

Kip Hope you’ve been geeking brighter. Down days really are inevektqble aren’t they? on my consent form for chemo there were three boxes. My onc told me to watch her as she ticked the one for ‘curative’ and explained that it was not neo-adjuvant or palliative which were the other choices. It was a bit shocking to see the latter on the form. She did expain that radiotherapy targets a specific area and the chemo is for the whole body to make sure there are no stray cells anywhere else. I think it’s also to prevent recurrence. I think having synchronous, bilateral BC comlpicates everything a little as they really can’t predict the benefit of chemo or my risk of recurrence in the way they can with one. Have you found that Reddi? I think they’re opting for a ‘belt and braces’ approach for me too and I was told my bilateral status, size of tumour I’m the right (52m) and nodal involvement, albeit micromerastasis were all indicators that I would benefit from chemo. From what I understand the prognosis is practically the same as the ‘worst’ case scenario tumour. Has anyone been given a lifetime risk of recurrence? I’m definitely going to check at my next meeting as I’ve not been given a number, just know that I have a familial high risk despite being BRcA and PALB negative. My cousin has had to have a re-excision so I’m just hoping she gets better news than I did and gets clear margins. I’m still waiting to hear if the Marsden are willing to take on my case and do my mastectomy and Immediate Tummy DIEP in the new year.

LJ I’m glad you’re GP is supportive and has signed you off for at least a month. Our bodies really have been through it.

I’m doing better on the Packlitaxel but the facial flushing and fatigue is a pain, Just so relieved to have no nausea. I only took the anti sickness meds for one day and haven’t needed them since. Larry tongue keeps threatening to make an appearance but I’ve beaten him so far. How is tingly Kip??

Have a good day everyone.

Clare xx

Oh O meant to say- my hospital doesn’t perform PR status tests. My Mums hospital did. How many of you had your Pr tested and what impact does it have on your treatment? Just wondering if I should ask the hospital, to do mine or I could ask them at the Marsden as I think they do test for it.
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Posts: 116
Registered: ‎30-06-2018

Re: June 2018 Chemo Starters

Hi everyone, 

 

I start on Herceptin tomorrow, and T (docetaxol) on Friday..... 

 

I wish I didn't even know the H word or the T word.... just thinking, this time last year, most of us didn't. 

 

Had a little wobble this morning when I thought I saw some pus around the picc line entry point.  The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid?  They said they didn't think it looked like an infection, so I am going ahead with treatment as planned.  

 

Didn't help that on the way in to the hospital, someone backed their taxi into the side of my car.  I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault....... He was really apologetic, but then tried to say he could ask a mate to fix it if I didn't use my insurance company etc. No way!!!!!  Not too much damage, but it will need fixing properly.  Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car.  I have told them my 'situation', and that I was not sure I would be home when they pick up my car and bring the hire car. 

Could have done without this, but in a funny sort of way, this just doesn't matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.  

 

Goodnight everyone.

Georgie x