LJ
Member
Posts: 49
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
Member
Posts: 159
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.

Member
Posts: 159
Registered: ‎29-06-2018

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.)

Member
Posts: 159
Registered: ‎29-06-2018

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.

Member
Posts: 159
Registered: ‎29-06-2018

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. 

Member
Posts: 159
Registered: ‎29-06-2018

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
Member
Posts: 625
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

Member
Posts: 560
Registered: ‎25-03-2018

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.
Member
Posts: 86
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 

Kip
Member
Posts: 625
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hi ladies, thanks for the replies.   All very interesting isn't it.... so looks like tamoxofen will be the way forward for me I guess.   I've had sweats and mood swings but can't tell if its hormones or chemo or both! And JacB.. crikey I hadn't thought about being treated for a cure or not..... that's worrying.  They keep saying to me "Belts and Braces approach" so hopefully that's good??  I must ask more questions next time... but I am always so glad to get out of the there I forget half of them... I'll write a list for 8th November appt!

Kip

x

Member
Posts: 560
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Hi all
Just catching up on the hormone therapy, calcium and wee messages!
I just realised I’ve also only had 1 period since starting chemo but mine were regular before I started so I suspect that’s why I’ve been told I’ll be going on to tamoxifen for 10 years. However, I spoke to a friend today and chemo put her into early menopause. It’s all very confusing. Kip, I would say just take things one day at a time and as you say the surgery is the next thing to concentrate on. I do understand you being nervous even though you’ve had surgery before. I’m feeling this way even though my surgery is some way off. I suppose I had no idea what to expect last time and this time I do. It’s daunting. I suppose it’s natural to have some anxiety before any surgery but I’m sure we’ll both be fine!! So sorry to hear your daughter has been worrying. It’s good she was able to talk to you though. I am extra sensitive to anything about cancer on tv, posters on bus stops and also have an issue with charity shops etc... seems to be so many fundraising ads at the moment which is great but in some ways I just don’t want to be reminded.

My Mum is on Letrozole and also has to take calcium tablets but she has arthritis and is 81 so I imagine she takes them to increase bone strength. I will ask next time I speak to her. I take Vitamin D because I’m mainly vegetarian but the nutritionist I saw told me I won’t be able to get a high enough dose from a shop and my Dr would have to prescribe it. Haven’t seen if they will or not yet.

Ktk - I’ve had an issue with the volume of wee I’m producing and how often I go! Not sure if it’s just because I’m drinking such a lot. I had prolapse surgery 6 years ago so no issues with leaking but I have found that having thought I’d finished I get up sometimes and more comes out! Just another wonderful thing about chemo that no one forewarned me of! JaqB good to hear the control should return at some point.

Take care everyone x
LJ
Member
Posts: 49
Registered: ‎12-06-2018

Re: June 2018 Chemo Starters

I'm another one waiting to find out about hormone therapy - I think I am 4/8 ER+, I remember I'm only moderately receptive. My menopausal status is a bit of a mystery as I had a Mirena coil in until just before surgery.  I've had one period since then, but it's not clear whether that was reaction to the coil coming out or what. I'm deffo having warmer moments though! I guess we'll talk about all if that at my next oncologist appt at the end of the month.  Am apprehensive about the effects of hormone therapy though, especially weight gain, I can do that on my own without any help!

 

Saw my GP today. She has signed me off for a month for post-chemo recovery, with the instruction that it's no problem to extend if I need more time or radiotherapy is proving too onerous. 

 

LJ

Member
Posts: 222
Registered: ‎22-05-2018

Re: June 2018 Chemo Starters

Hi Kip
I’ve just come out of a meeting with my oncologist and I asked the question about tamoxifen or letrozole. She said that as I was still menstruating when I began treatment I will have tamoxifen for an extended period of 10 years. Like you I have had just one period since starting and have gone full blown into sweats, aches and mood swings. And also (this falls into the TMI category)! vaginal dryness. Oh joy, oh bliss 😊. She also said we are still treating me for a cure, tbh I hadn’t considered that they may not be 😬 I’m 55 this month, her2 + er+ 8/8 pr-
Jacq X
Kip
Member
Posts: 625
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hmmm, its strange isn't what we get told at different hospitals.   I haven't actually had any kind of lengthy discussion regarding hormone bit, all I know is I am pre-menopause (or was before chemo) and that I am ER+ 8/8 so will have to take hormones (they mentioned Tamoxofen).  I did have a bone scan before chemo but not sure if thats the same kind of scan or not?   I guess once I have had the next surgery and got all clear from that they may talk about it, not sure if that happens before or after rads?   Its just one thing after another to get your head around isn't it.  I have wondered how they assess whether or not I am post or pre menopause now chemo has been done, as I have only had 1 period since beginning chemo so not sure what that means, have they stopped for good or just during chemo?   I can't begin to think about it all as now getting my mind ready for surgery, and actually getting a bit scared although I've already had one lot so shouldn't be but....

Also had a lovely chat with my daughter last night and out of the blue she told me she worries about me and it makes her sad but she doesn't tell me for fear of upsetting me.  Well that set me off...I hate the fact the children are worrying but I know its normal.  She said she wants everyting to be back how it used to be (cor me too I thought) and she hates seeing me ill.  I tried to reassure her that I am feeling fine now but its hard when she knows I still have other treatments to go.  I just hope the rads are straight forward and she can see I am coping.   Just as I had got her smiling again... on the TV was a little girl who had lost her Mummy when she was 3 due to Breast Cancer... BANG... I could see my daughter deflate and look at me with fear.  What on earth do you say?   I did my best to reasssure her but crikey its hard.   Its really deflated me to be honest too, went to bed worrying again.   Just seems you can't escape BC wherever you go, today a charity bag came through the door... yes for Breast Cancer!   One of those down days I guess, but am picking myself up and carrying on....  its all we can do isn't it.

Take care all

Kip

xx

Member
Posts: 159
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@ktk Hmmm. No bone scan. My theory falls apart. I have half assumed that drug-induced menopause might be harder on the bones -- or perhaps earlier menopause is the issue. Time to do some research!
ktk
Member
Posts: 486
Registered: ‎02-04-2018

Re: June 2018 Chemo Starters

I didn’t have a bone scan btw.
ktk
Member
Posts: 486
Registered: ‎02-04-2018

Re: June 2018 Chemo Starters

Hi Reddi perhaps you get the bisphosphonates because of chemo induced menopause? After all of this the last thing we need is crumbling bones!!🤣
Member
Posts: 159
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@ktk I am 47 and pre menopause and my plan currently has bisphosphonates in it -- though I am not yet at that stage of treatment, and we haven't yet discussed it in detail. Indeed, I have not even had a bone scan as yet. My guess -- and it is a guess right now -- is that the bisphosphonates are related to length of hormone therapy they are considering for me. They have been talking about 10 years in Zoladex. I suppose I should mosey over to the hormone therapy boards to gather more info...
Member
Posts: 126
Registered: ‎10-08-2018

Re: June 2018 Chemo Starters

Yes ktk, I am 63, and had a DEXA scan to assess my bones before starting the letrozole? The scan showed, apparently, that I am edging towards the dodgy side of bone thinning - but I tend to be very sceptical by nature, and question things a lot - I had quite a debate with myself over the letrozole, and decided I'd give it a go, as it was stoppable if I decided to change my mind. I have found that the oncologist I have met twice is a touch humourless, and if I were of a much more sensitive nature, she would give me the heebie-jeebies!! I put it down to what the nurse said - that a high percentage of people refuse what oncologists offer, and maybe that again is down to 'the older woman' and choice of quality of life ( my take on it, personally ). This is purely my take on the whole matter and I in no way mean to generalise about other peoples'opinions.
ktk
Member
Posts: 486
Registered: ‎02-04-2018

Re: June 2018 Chemo Starters

I think it is age/menopause related Kip. I am post menopause (57) so I guess the risk of osteoporosis is greater and warrants the bisphosphonates and vit D. But what do I know?!🤣