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June 2018 Chemo Starters

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Re: June 2018 Chemo Starters

@Kip The cryo stuff seemed to work really well in the first T cycle -- when I got Herceptin and Perjeta the day before, so docetaxel was given straight away when I got into the CDU. These past 2 cycles they haven't seemed to do much -- sitting in a chiller bag, even with an ice pack, for 8 hours before they are used means that aren't nearly so cold. (The first cycle the socks were so cold, they were barely bearable. Not so, the last 2 times.) The tingling is across all of my fingers and occasionally in the palm of my hands. I guess I underestimated this SE. Grrr. I hope your Tingle stays quiet after your armpits start to come back to normal.

 

@cdc Good work on becoming a Breast Density Matters ambassador! 🥂I know this is an issue about which you are passionate, and your story is compelling -- exactly what is needed to get some change in screening policy. 

 

@Georgie Gee Are you home??? I do hope so.

 

I haven't had surgery yet, but physical intimacy has been awol since my first biopsies, in large part because I was so sensitive in the breasts that it's strange to try to be intimate without touching them -- and my OH and I just think of the cancer then, so we avoid it. 😕(Def TMI, but can't find less specific words for this that aren't super confusing.) Plus, chemo isn't exactly sexy. But as I was thinking about surgery options -- and I will have options -- I realized I need to weigh long-haul considerations like this to help ensure I'm happy and recovering post-treatment in something like the way I'm imagining in my little future projections. Which reminds me that I need to book in with the therapist! (Once a New Yorker, always a New Yorker.)

 

Surgeon meeting report! 🔪

 

Meeting with the surgeon was very helpful, though I could tell *he* didn't understand why I wanted to meet with him now since he thought it was obvious that we'd wait til the post-chemo MRI to make the decision. Well, yes, but my case is complicated and I'm going to need more than a day or two to explore pros/cons and wrap my head around how the surgeries will interact with continuing treatment and reconstruction.

 

Surgeon's current plan is comforting, actually: the oncologist was wrong, and he is planning to spare the left nipple, even though the lesion is somewhat close to the areola. If the path report doesn't have clear margins, then the nipple will need to be removed in a re-excision. For the right breast, he estimates that about 1/3rd of the tissue is DCIS, with some probably much smaller area of IDC, though they cannot tell from any scans which is which. Without yet seeing the post-chemo MRI, he would suggest a mammoplasty partial mastectomy, possibly/probably taking the right nipple, even though there is no cancer visible in the MRI, since multiple ducts are involved. If he doesn't get clear margins, then we'd go with full mastectomy as the follow-up surgery rather than re-excision, since DCIS doesn't tend to respond to chemo and they would be cutting blindly. There was also an area of LCIS in one of the right breast biopsies, and LCIS has a great risk of recurrence by 20 years -- and in some cases, the secondary cancer is in the other breast. However, I can't imagine that there's much science proving that it's a secondary of the original LCIS, since genetic analysis of individual tumors isn't standard practice yet; probably just some general genetic disposition that isn't a mutation in BRCA1 or BRCA2, so I'm strongly leaning against a prophylactic mastectomy of the left breast.

 

I'll be spending the next 3-4 weeks weighing the pros and cons of going forward with mastectomy versus having a breast-conserving mammoplasty partial mastectomy on the right breast. There's just not much tissue to move around at the time of the initial surgery, so I might decide mastectomy, as my remaining tissue probably won't be breast-shaped after  the procedure; indeed, I thought that over 20-25% of tissue, the general rule was to do a mastectomy on smaller-breasted women. [Edited to correct info: definitely not a mammoplasty option for me. At 20-40% of tissue removed, it's technically a partial mastectomy. It seems that if the path report is clear, the breast might be reconstructed with a pedicled LD "miniflap" before RT; otherwise it's a free miniflap year after RT -- but with less tissue harvested from the donor site. I guess I need to start a surgery thread.]

 

I think I'll also see if anyone in the Someone Like Me program matches up with my current cup size (36B/34C) and had a similar decision -- particularly someone who took the mammoplasty option. (I don't think anyone in June chemo starters did, but let me know if I'm wrong!) 

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Kip Community Champion
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Re: June 2018 Chemo Starters

CDC - sorry I wanted to add that I think intimacy is last on a lot of our lists... my husband is still not keen to see my scars, especially now I have a drain in tow!   I think thats something we need to work on once treatment is over and I can start to feel like a woman again.. still look in the mirror and don't recognise myself (facially or bodily)... In fact hubby has been sleeping down stairs since this last operation as he is scared he will pull out the drain by accident... I think on the whole he is very squeemish...and must say double bed to myself is rather nice but a big lonely.

 

Ooh.. just got the post and I've received my NHS survey to fill in...something to pass the time

xx

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Re: June 2018 Chemo Starters

That is so interesting CDC and so impressive that you will get to speak out about this issue.  I am sure when I had my initial mamograme and then subsequent U/S and biopsy the doctor said that due to my age my breasts were dense and they couldn't see anything on the U/S.  Its one of the things I will be asking about as/when I get to a point of discussing future check ups.  

Sorry to hear the SEs are plaguing you again, but good it isnt the nausea.  Those steroids are devils aren't they and it does start to feel like this journey is never ending.  I am so fed up of the drain being in, still no sign of it leaving any time soon and its makign me feel like a patient too.   Im at the hospital tomorrow for the dressing check so hoping that can advise on whether this is normal to be draining so much still.  Just another thing to worry about.

 

Reddi -  Sounds like you had a nightare day waiting around and then the needle thing.. grrrr.  I had 2 lots of chemo using the vein under the thumb.. painful!!!  And I got a big bruise there too.  Is the ice on your hands helping with the neuropathy?  My tingle thumb is still a bit tingly but I think it is coming back to life slowly, I still get pins n needles going through my hand occasionaly though.   But now I have a numb armpit and arm to deal with so focusing on that sensation now.

 

KTK - good that the rads are going well, what are you using to moisturise?

 

Kip

xx

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Re: June 2018 Chemo Starters

OOh I forgot to say that after signing and commenting on a petition for an Inform Law (which would mean that people are told of their breast density and what this might mean with regards to an increased risk of BC and a need for further screening) I was contacted by Cheryl Cruwys the co-founder of Breast Density Matters. She has asked me to become a BDM ambassador and will be sharing my experience* at the biggest Cancer conference in the UK - Britain Against Cancer- being held on the 4th Dec at Westminster, She is also sharing my story with Craig Tracey MP as he has delivered briefings on the subject in the House of Commons and is a supporter of UK Breast Density Education Effort! If anyone else has a similar experience to share then let me know or check out the Breast Density Matters UK facebook page. The more we can get the information out there the better. Hopefully tumours will be picked up earlier and need less drastic treatment.

* For those that don't know already - I had yearly mammograms for 8 years due tohigh familial risk. The last one was less than a year before I felt a thickening of tissue on my breasts. After a private U/S I discovered that I have extremely dense tissue and as this shows up as white, any tumours are masked on mammogram as they also show up as white. Very dense tissue also raises the risk of BC. I should have been having MRIs but these are officially only available on the NHS to people who have the BRCA1 or 2 gene. The tumour on the left didnt even show up on U/S and the size of the one on the right was underestimated.
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Re: June 2018 Chemo Starters

Hi everyone

Sorry for being so quiet but Im also finding it hard to cope mentally and physically after my 3rd cycle of paclitaxel. I'm so sick of treatment and for the first time I truly feel like a cancer patient. I think I was also extremely unsettled by my appointment at the Marsden.
Waiting to hear if I can see a different consultant for their opinion.

Reddi So sorry to hear about your SEs, long waits and defensive and tetchy BCN. Since my assigned BCN moved to another department, I find her replacement less helpful and feel like I am 'bothering' her.
I also requested an appointment with my original surgeon which seemed to get her back up. Maybe I am just over sensitive and imagining things. How did your appointment go? I hope you have some answers and it will help you to make a decision. I have some nipple sensation remaining following my TM but not a lot. If I do have to have a mastectomy I've been told I will lose my nipples. I was sad about this for both my OH and my sake but to be blunt, intimacy has not really been on the radar recently!! Sorry if thats TMI.

Georgie Gee Hope you've finally escaped Casa NHS and are enjoying spending time with your daughter on her birthday.

ktk Good to hear you are finally feeling better four weeks post the dreaded T. Hope rads are going OK and the moisturising is helping. Im still waiting to hear if rads are still on the agenda for me.

I thought the weekly P would be a breeze in comparison to T but I was also warned of accumulative SEs. Because I've had a week's break the SEs seem to have come back with avengeance especially the downer coming off the IV steroids. My neuropathy seems somewhat better though. Seeing the oncologist tomorrow to make a decision about Fridays session.

RedRose - lovely news about the wedding. Enjoy the preparations. I've also never heard of the ball-bearings being used with regards to radiotherapy. Its interesting how each hospital does things differently. Hope your last chemo session has gone ok and you don't have too many side effects. I can sympathise with the cold body and hot head scenario. Menopausal symptoms are just the latest in chemo's lovely arsenal of SEs for me!

Kip Hope you can get rid of those ***** drains soon! I've got a strange taste in my mouth for the majority of time now. Wasn't expecting to get it on P. I am very glad that I have no nausea though although I've discovered that sometimes my hospital stops taxanes if they are causing too many problems and gives another 2 sessions of AC instead. I can sort of cope with the numb toes but the nausea was horrendous so I hope to carry on with the P for as long as possible.

Really very interesting to hear about the Proton therapy at the Rutherford. Obviously cost prohibitive for the majority. I wonder if it will eventually become standard treatment. I sometimes wonder if in years to come people will read about radio and chemotherapy and consider them barbaric!

My daughter is off to a Halloween party being organised by her Aunt so I think I'm going to go and have a rest while she's out. Feeling so fatigued. I have five hospital appointments over the next 3 days. Wish I could just sleep through them all and wake up when everything is finished.

Take care everyone xxx
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Re: June 2018 Chemo Starters

@ktk I wish I might be a candidate for therapeutic mammoplasty, but I don't think I am -- too small, I think. I'd take less sensation over no sensation if that were an option. A question to add to my list for the surgeon this afternoon. Thank you!

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Re: June 2018 Chemo Starters

@Kip I'm on TPH (docetaxel plus HER2-targeted drugs Perjeta and Herceptin). SEs could be the combination or just the docetaxel; no idea. With your report, I'm focusing on looking forward to the other side of chemo SEs come December!

 

I'm at a big teaching hospital in London, so I'm constantly meeting new doctors, too; I've seen so many oncologists, I've lost track. For just usual pre-chemo appointments, I've seen 5 or 6. Then there are an additional 4 or 5 I've seen in A&E or on ward when dealing with infections. I was so happy when I saw the same onco for 2 appointments in a row. 

 

Forgot to note that I had pins and needles through my last cycle, not so much that I was worried (no blistering and very little peeling, unlike @cdc, who has had it bad), but enough that the oncologist considered lowering my dose of T. But because I'm already on 75-80% dose (starting from first cycle of T, due to liver function issues), she decided to hold steady; next time, it might go down to 50%. 

 

(Actually, last week was one assault after another: my BCN got defensive and tetchy about the surgeon appointment request, scolding me for asking the oncologist anything about my treatment plan and basically dismissing my questions in an email; then on Friday my chemo nurse left me waiting in reception for 2.5 hours -- just overlooked my name on the sign-in sheet -- so I had yet another very long day; this also meant that my cryo sock and hand wraps, which are intended to help fight against peripheral neuropathy and nail damage, were no longer ice-cold when it was finally time for T at 4:30pm; the same nurse also completely missed my vein when attempting my cannula, causing a lot of pain and forcing use of the site under my thumb, which clearly wasn't up to it, given the big bruise that emerged. Indeed, when I hadn't got a cannula in by 11:30am and did the maths for when T would start, I broke down crying, knowing that my cryo stuff had been thawing since I left the flat at 8:40am. Had to convince them that I wasn't needle phobic but needle philiac. Only makes sense that SEs this week would be worse this time -- I already felt well and truly beleagured before the drugs even entered my body. I think it does make a difference.) 

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ktk
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Re: June 2018 Chemo Starters

Hi Reddi. I felt dreadful after T3. Onc had suggested that he could reduce the dose but I said to hit me with the full dose. I have only really felt better this week, four weeks post chemo.

I am on 15 + 4 booster sessions. I’m moisturising like mad!!

I had TM on both sides. They cut off my nipples and stuck them back on!! They look ok, and there is some sensation although not the same as before.

Hope everyone is well and that Georgie has escaped and is enjoying birthday celebrations 🎉 Kx
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Re: June 2018 Chemo Starters

Hi Reddi, good to hear from you.   Seems you have a lot of decisions to make too.  Sorry only had straight forward MX, no nipple to save unfortuantely, but well worth discussion if you can save and swap.   Sorry to hear the SEs are bugging you, is it T?  If so, I found the SEs varied each cycle (with exception of the lardy mouth which was there everytime).   But glad to say, 5 weeks post chemo, everything fading, now just dealing with the ANC op SEs instead. 

Hear's hoping you get some good answers from your surgeon.   I find I see one person for a couple of appoitments and then never see them again.  I have an appointment on Friday to have dressing removed/changed and its a lucky dip who I will see.  I saw one surgeon to discuss my ANC and then when I went into hopsital found the surgeon I had wasn't her at all... pick n mix at Ipswich I think.  At least the ONC has remained the same, although I have only seen her 3 times I think (only twice throughout chemo too).

Kip

xx

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Re: June 2018 Chemo Starters

Hi all. So much happening since my last check-in.

 

@Georgie Good luck today! I hope you get home, get your belated birthday(s), even if small-scale for now, and sort out things with your oncology team. 🎂Stand strong in pushing your doctors for explanations and answers and for figuring out what the best and better options are for *you*.

 

@RedRose Congratulations on the wedding bookings! 👰💐You must be so excited. "Enjoy" your last cycle today, too.

 

@ktk Will be eager to hear your reports from rads. From reading a bit about the side effects, it sounds as though things build up day by day, with some people feeling the effects mostly after they finish the sessions. Have they given you any sense for the dynamics? Do you have 3 weeks of rads? Or did you get prescribed a booster, too?

 

@Kip What a drag about your drain. It's good to give it the time it demands, however -- and you'll be all the more delighted to see the end of it. I only had 4 nodes out on left and 5 out on right for my SNLB, and I had off-and-on numbness for weeks afterward; occasionally, I still get some. (Need to get back into my routine of doing exercises every day; at the very least, they help loosen up my shoulders.)

 

@cdc How are your feet and hands holding up??

 

I'm sure I'm missing people. Will circle round after posting.

 

On proton therapy: From what I know, it's not that proton therapy -- which sounds like a form of targeted radiotherapy that can be more pinpointed to cancerous tissue -- is unsuitable for all cases of breast cancer; it's just that it's quite expensive and the benefits for many cases of breast cancer don't support its use. Proton therapy seems to be more used in children who are still developing, so radiation damage to healthy cells can have significant effects, and in cases of cancer in the spine, where the risk of radiation exposure to the heart is very high. I looked into it because my left breast tumor is on the interior, so if they proceed with lumpectomy on that side, the breathing exercises to protect my heart and lung will be essential. 

 

Having a pretty crappy cycle 6. I was fine for the first 3 days, but then midway through Monday (day 4), I was clobbered. I'd been to the hospital in the morning for reflexology and a check on my cannula site, which developed a big bruise while I was sleeping on chemo night, and felt tired on the walk home from the bus. By the evening, I had pain across my shoulders/back and through my legs and arms, with stabbing pain in my esophagus now and again, and I was exhausted. Yesterday was slightly better, but still much harder than the same day in cycle 5. Today I woke to what feels like a UTI. As I am off to the hospital this afternoon to meet with my surgeon, I thought I'd go early and drop by the chemo hotline office rather than call.

 

Meeting with surgeon to discuss state of play. Last week I'd asked my oncologist some questions about my MRI and surgery planning, as I know decisions about mastectomy or lumpectomy will move very quickly after cycle 7. The oncologist couldn't answer based on my case file, so requested a surgeon meeting asap. Afterward I realized that I haven't seen my assigned surgeon (except for speedy SLNB consent and the operation) since before my pre-chemo MRI; my treatment plan meeting was with oncology and was focused on chemotherapy consent. Because the stuff in my right breast isn't palpable or visible on US or mammogram (beyond microcalcification clusters), I've only got a vague sense of what is going on there. At one point my nurse suggested that the plan is for two lumpectomies (left and right), but I don't know if that is accurate, and even if they advise two lumpectomies, I don't know if either nipple can be spared. (I'd really like to spare one nipple, if at all possible -- maybe with a graft from right to left? who knows -- and if I can't, I might just go ahead with a bilateral mastectomy; it's not about look for me, but about physical sensation.) And of course, surgery decisions are interwoven with radiotherapy, too. Would love to know if any of you discussed nipple-sparing options with your teams, and what sort of feedback you got...

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Re: June 2018 Chemo Starters

KTK - glad first one done.  Yes I guess its a very different process being stuck alone in a machine, I like to be around people and chatting so I may feel the same too.  I hated being in the MRI machine with nobody to talk to.  

RedRose - crikey ball bearings taped to you... wow... wonder what I will get?   Fingers crossed for the last chemo... yayayyyy thats a fab feeling, just ride out the SEs and then move on.  Good news about the wedding, thats definately something to focus on!  Hope you slept well.

 

The proton therapy sounds interesting, shame its not suitable for BC, but there are always hopes for the future hey.   Thanks for the information though.

 

Im still attached to my drain, hoping tomorrow might be the day we part company.  Still stiff, but not too bad, bit sore underneath and the numbness makes me feel weird under the arm but musn't grumble.

 

GeorgieGee - are you ready to be rescued?

 

Kip

xx

 

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Re: June 2018 Chemo Starters

Hi,
Has anyone finished chemo and got a very salty taste still? I finished 8 weeks ago.
I asked my oncologist re proton therapy as was considering it instead of radio as causes less damage to your body. She said that its not prooved to work for breast cancer and only things tried and tested are used by the NHS so that put me off. There is one at the Rutherford Group www.therutherford.co.uk n south Wales. I have contact details if you would like them as my friend discussed my case with them. You can google them too. They offer therapy for breast cancer. The private cost is circa £50k but no waiting time, price could be negotiated if not fully utilised?? Its £200 for a consultation. Its 4 tiles the strength of the Czech facility so less treatment time is neede. Hope that helps.
Linda
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ktk
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Re: June 2018 Chemo Starters

Red Rose very excited for you. Something lovely to look forward to.

First rads ok. They remarked the ratios with pen. No ball bearings for me! Actually I found the procedure a bit intimidating. After chemo which is so communal with lots going on and people to talk to this was very lonely. Just the two radiographers getting you into position then they leave you and you get a disembodied voice instructing you to breathe. They said the first session is the longest. Back again this afternoon. Kxx
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Re: June 2018 Chemo Starters

KTK how was the first rads? Georgie hope your ok. Numbness does sound great Kip but their out, are you in pain? Xx
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Re: June 2018 Chemo Starters

Hi Kip, the wire was to highlight the target 🎯 area of the left breast while in the CT machine and the ball bearings were taped to where they did the tattoos to highlight these areas. I was gonna joke and say that the maintenance man had them left over when fiddling with the machine and gave them me to use as stress balls 🙊 but thought it may be too much. Church and venue all booked for the wedding 💒 eeeek! Going to try and get a reasonable nights sleep as last chemo tomorrow, but may be difficult as excited and body is cold and head having a hot flush. Goodnight all xx
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Re: June 2018 Chemo Starters

Hi RedRose, so good to hear you sounding upbeat and things progressjng nicely.  What is the wire and ball bearings for?  Didnt know about that!!  And excellent to hear the wedding planning is in full swjng that is wonderful and something exciting to look forward to.  I look like a GI Jane so will suit a tank, ill watch for you swinging in too.  

Ktk ... Oh i have a while to put up with the numb pit then...  Oh well hopefully it will feel better once tth drain comes out??  How did your first Rads go?  How many weeks do you have?

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Re: June 2018 Chemo Starters

Just sat reading the latest post while waiting for O/H. We are having the best of luck at the moment, Georgie Gee, I hope your stay at hotel 🏨 NHS is not too mind numbing and that you sort out your treatment plan as you want it. I don’t know about swinging from the rope thing after the chemo tomorrow but I can nick some of the step sons camo gear and rock up in that? Hair is very GI Jane at the moment for all of us so very fitting. Randomly have “we are in the army now” singing in my head 🎶. I hope everyone’s side effect are getting better? How’s the numbness, feet, swollen throats and drains and op sites? I too have had the cancer survey thing, which I won’t be completely just yet, a few q&a’s with the hospital first. Got to shoot off for now ladies, be back later, got to go see a 👨🏻‍💼 about ringing a bell ⛪ 🔔 👰🏼 🤵. Xx
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Re: June 2018 Chemo Starters

Evening Ladies. Sorry for my absence, been no stop over past few days. Had radiation planning meeting wire round breast and ball bearings stuck in place so would show up, they now have their measurements and I’m no longer a tattoo virgin 😱. Radiation starts 26th November for 4 weeks as I’m having a weeks boost apparently. Went to oncologist who said I’m better than I was but still swollen and red. So put me down for scan on leg for blood clot/dvt. Just ready to leave hospital with blood thinners and get called back and said they wanted to do it that day. Long story but no dvt or clot they reckon it just my veins and the side effects of chemo causing the redness and swelling. Chemo is going a head tomorrow at the reduced dose of 60% apparently I can get away without it as I have had the full 100% on doses up to yet but want too just to be sure. Fingers crossed both treatments should be done by the Friday just before Christmas. On a happier note we have also been to church ⛪ to see about the dates available and if the O/H can wing his way back here pretty sharpish, tonight we are going to book the church 💍👰🏼🤵 and reception venue. Something nice to do before Halloween 🎃 chemo session and finally ringing the bell 🔔 for my last one xxxx
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ktk
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Re: June 2018 Chemo Starters

Morning all. Hope you are beginning to feel better Georgie and can celebrate tomorrow.
Kip the numbness in your pit lasts for ages. Really only just got sensation and my op was May!
I was due to start rads this morning and the phone rang as I was walking out the door to say one of the machine was not working. So I am going in this afternoon instead.
Love to all xxx
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Re: June 2018 Chemo Starters

Yes Georgie Gee, Shi is right.. you ask all the questions you need... and don't be pushed into anything you don't feel happy with.. its your body... It may be good to have your daughter there to hear all the information and to offer her opinions too.. take it all into consideration and take your time. 

Look out for the rope...I'll be swinging in on Wednesday, commando rolling across the floor and whisking you and your daughter out of there.. the tank will be revving! For now, rest up and prepare for Operation Breakout!

 

I'm still attached to my lovely drain and will be again today, 1 week ago I was on the operating table, time flies when you are having fun Smiley Frustrated  I'm working on the exercises, weird being so numb under the armpit though!  

Hope everyone else is doing ok, CDC hope the SEs are being kind and the numblies are behaving.

KTK - how are you doing?  Coming through the chemo fog now?  When do you start Rads?

RedRose - how are you doing?   Hows the arms/hands and feet?  

Kip

xx

 

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Re: June 2018 Chemo Starters

Hi Georgie gee 😘😘😘👭👭👭👭sorry to hear you are being kept in a little longer and sending you big hug and 🤞🤞that some of Wednesday is salvageable. You should do a double birthday next year with a girls shopping week in New York or anything you fancy just as long as you spoil yourselves 😘😘to make up for these ones, in fact just do it as soon as you’ve finished treatments 👍👍Get your list of questions ready for your onc, you can post them on here if you think there might be something else you need to ask and we could help if you want us too. There is the someone like me facility on the bccf if you need to speak to someone. You’ll need to make choices and decisions that are right for you darling, it’s your journey and you are in control even if you don’t feel like you are. Sending you lots of ❤️❤️❤️❤️😘😘😘💕💕💕✨✨✨✨✨✨now if you see a rope come down through the ceiling that’s kip doing her Tom cruise mission impossible rescue to you because this isn’t mission impossible and everything is possible ❤️❤️❤️Shi xx
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Re: June 2018 Chemo Starters

Good evening Ladies,

I hope the tank is patient! The doctors told me this morning that they are not letting me out until Wednesday.

The antibiotics for my kind of sepsis are only IV, and therefore I have to stay here to receive them.

I was quite shocked, but in a way I guess they are right to be cautious. NaughtyPhils are ok but they are keeping an eye on them.
My daughter was scheduled to come on Wednesday, as it's her birthday, and we were going to have lunch and be together. My birthday in September was the day after a chemo so I did absolutely nothing, so it was going to be a double birthday!
So Wednesday has changed quite a lot... first thing, birthday girl will come here and collect me from the ward. We will then go to have picc line check up and to see oncologist, which as you say Kip, will take as long as it takes to discuss everything thoroughly. Then I really really hope that we can go home and have at least lunch and the afternoon together.

Thank you everyone for your best wishes and support. It will be better I think when I know what the plan is, but I don't think it will be an easy discussion as my daughter doesn't want me to carry on with chemo.

Bye for now
Georgie Gee xx
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Re: June 2018 Chemo Starters

Morning Ladies...

Georgie Gee - loving the NaughtyPhils!  Good name... I've got the tank revving up, music ready to go and hot pants sparkling..lets break you out.

On a serious note, I think everyone has the right to refuse or question any treatment they are offered.  You should definately have a big chat with your ONC, you sound like you have lots of information at the ready, take a list of questions and don't leave until you are satisfied.  You have had to deal with a lot of issues and only you know what more you can take.  I had 3 FEC and 3 T, but was told the 2nd and 3rd T were reduced due to me being in hospital with NaughtyPhils, they didn't say how much they reduced them by, but did say that it was usual to have 100% of T first time round and then reduce them for the subsequent cycles.  

Its interesting to read about the Proton treatment, shame the new machines aren't ready yet though, but worth discussing.   Its good to know that treatments are progressing all the time, even it not ready for us just yet.

CDC - glad you got the chemo, not glad you have the tingles and numbles again.   Hopefully it will go as the chemo gets throught, my Tingle is definately improving post chemo, its 5 weeks ago since last one and the tip is still  numb but a lot less than before, so hopefully  you will be the same.   Hope those SEs are minimal and you feel brighter soon. 

I can't remember if it was on this thread or the May Surgery thread, but there was discussion about finding suitable post op bras?   Anyway, I asked a friend of mine who had MX 2 years ago and she buys hers from a catalogue called Nicola Jane (on line website).  They aren't always the cheapest but do offer all sorts of styles and fabrics.  My friend is large busted and finds that when she bends forward (she is a nurse so has to lean over patients) sometimes she would flash a hint of lopsided cleavage and Nicola Jane do bras which have a built in panel to prevent this, worth looking at.  She also buys from M&S and Debenhams but N Jane is her preferred outlet.  They also seem to do swimwear, clothing and have a range of bras not only for MX but for reconstruction and radiotherapy.  I feel some online shopping coming on and I can't blame the chemo brain now!  Eeek.

Kip

x

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Shi Community Champion
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Re: June 2018 Chemo Starters

Georgie gee, get the bag packed, me, ladybowler and kip will be 💃🏻💃🏻💃🏻🕺🕺🕺🕺👩‍🎨👩‍🎨👩‍🎨👩‍🎨to walk like an Egyptian by the bangles in the morning so those naughtfiles had better behave 🔫🔫🔫you need to let us know your escape tune so we can have it ready in the tank for you 👍👍kip you’ve got that covered haven’t you mate 👍ladybowler, sequinned hot pants hooked up and off we go to get Georgie gee out. Georgie, did you manage the agadoo over your cuppa? 😂🤣😂🤣😂if not tomorrow’s mission is to fling a sock as far as you can and say the wind must have too it 🤪🤪🤪🤪🤪or you could do a mai7 special she launched her wig across the ward once 😁😁😁classic thread moment 😘😘😘💕💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

I’ve been told 3 weeks of Paclitaxel is the equivalent to one full dose of Docetaxol. As I’d already had one docetaxol and now have 3 Paclitaxel under my belt (albeit the last one at 80% of the dose) I have the equivalent of 2 x T left. My team are worried about permanent damage to the nerves in my feet especially and I’ve been told I could end up not being able to walk if they carried on with chemo regardless. I suppose we just have to trust our teams to get the balance right between ensuring the chemo has done its job and making sure it doesn’t damage our bodies in other ways. I feel that I have little control over their decisions. I suppose ultimately we have the right to say we no longer wish to continue. I’ve certainly felt like that at times!

Take care x
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Re: June 2018 Chemo Starters

GeorgieGee

 

All the building work going on around UCLH is to accommodate a 'proton therapy machine'  -  I believe this was the therapy that the couple took their son to Czech Republic for? When there was all the pandemonium about them getting him out of the country against doctor's' wishes?  I believe it is meant to be the bees knees in targeted beams . . . . . .but not due to be up and running until 2020 I believe. 

 

ah, and it seems there is another centre in the process of building at the Christie, Manchester.

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Re: June 2018 Chemo Starters

CDC I have had 3 FEC and 1 x (75%) T.
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Re: June 2018 Chemo Starters

Hi Georgie Gee
Can you remind me how many cycles of chemo you have had now? Has there been any suggestion of going on to weekly Paclitaxel or some alternative? I’ve been very lucky not to have any issues with bloods but because of the skin/nerve issues I’ve had I’ve been told I may have to come off ‘taxane’ treatment but that there may be an alternative otherwise I’ll be finishing chemo early, I think I’ve had 75% of the expected cycles. I have heard of Proton therapy but do not know what it is. Definitely worth discussing all the options with the consultants. I hope they can give you some ideas of what to do next. In the meantime I hope you are feeling better and home soon xx
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Re: June 2018 Chemo Starters

Michelle, that's interesting...

I had only 75% of the dose of Docetaxol, and only 50% dose of steroids. I don't know sometimes whether or not oncologists just have to guess why certain things happen. I must admit, at one point I began to wonder whether the ca had spread suddenly to my oseoghagus!... you know what it's like when you have too much time to think?!!

Bye for now
Gina xx
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Re: June 2018 Chemo Starters

Hi Georgie Gee, I just wanted to tell you of my experience on Chemo. I also had swallowing problems that started when I started Docetaxol. For a good few days I was eating scrambled egg and soup, meat and bread were particularly hard to swallow. My onc put it down to the increased dose of steroids on Docetaxol and apparently they irritate the oesophagus.
I hope your naughty philes pick.up soon x
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Re: June 2018 Chemo Starters


I am in a bit of a quandary at the moment, about what to do next. I have a meeting with my Inc on Wednesday, and I think she had a plan to reduce Docetaxol to 50% next round, but at the moment, I am quite reluctant to have anything. The thought of this happening again, I just can't tolerate.
I'm generally thinking that it's just sadly incompatibility with chemo for me, and for some other reasons I'm questioning radiotherapy at the moment too. Need a good chat with some professionals. I can't be the first and I won't be the last person for this to happen to.
I read today about proton therapy, which is in the U.S. but very new here, as an alternative to chemo and radiotherapy. I might ask about it. It's a more accurate targeted therapy. Anyone heard of it? I am also supposed to have herceptin, but it won't be with chemo now..... oh I am a complicated soul....
Georgie xx
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Re: June 2018 Chemo Starters

Glad to hear the swallowing has improved-just hope those ‘naughtyphils’ (brilliant name!) start behaving too Georgie and you are soon out of Casa NHS. Sending hug xx
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Re: June 2018 Chemo Starters

Hi CDC and Everyone Else,

Shi I am not at all offended by everyone's kind and humorous messages; I love the idea of the cavalry all arriving to get me out of here! (Drip stand or no drip stand!) ...... guess I could use it as a weapon even... Kip, keep that tank filled up with fuel! It might be tomorrow, neutrophils dependent! I've decided to re-name them as 'naughtyphils' - does everyone agree?!
The swallowing has improved thankfully, so i might be ready for the great escape tomorrow.

I'm just a bit slow replying sometimes, but am finding it such a help to be able to speak to other ladies who know and understand my predicament!

KTK that is very intetesting that you had the same symptom with the swallowing! And LadyBowler, I have as it happens run out of pants!! So the glittery ones are on my suitcase ready to put on!....

All the best to everyone
Georgie Gee xxxxx
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Re: June 2018 Chemo Starters

How is everyone doing today? X
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Re: June 2018 Chemo Starters

Hope you are improving today Georgie. The swallowing problems sound absolutely horrible. Have the medics worked out what’s going on? I do hope so and that they’ve found something that will help.

Sally I’ve just finished filling in the NHS cancer treatment survey I received. There really wasn’t enough space for me to write all that I wanted! Have you heard of The Duty Of Candour? It is a procedure by which the UK screening systems are honest and transparent to any errors made. Would this be relevant in your case? NICE has guidelines on when it is appropriate. In my case I’ve just learned about it from Cheryl Cruwys who works globally on Breast density awareness. I commented on her petition to create a Breast Density Inform Law and she got in touch with me to ask if she could share my story with an MP, Craig Tracey, who has delivered briefings on the matter in the House of Commons! I’ve also become a UK ambassador for the Breast Density Matters charity aiming to educate people on the additional BC risks of dense breast tissue and the possible need for further screening.
I’ll be discussing my specific case with my team on Friday.

Been feeling low today. I think it’s a downer from IV steroids on Friday. I’ve felt so well and I’ve realised it was probably my body having a break from the chemo. Glad Friday’s cycle went ahead but having to get used to SEs again. I’m so tired and fed up!
Unfortunately my toes seem to be affected again and I have a slight tingling in some of my finger tips. Thankfully I’m still nausea free. Just got to take it easy today and remember I won’t feel like this forever.

How is e
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Shi Community Champion
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Re: June 2018 Chemo Starters

Georgie gee ❤️❤️❤️Sending love, hope things have improved today my lovely . kip, ladybowler and I are only trying to keep you 😁😁💪💪💪 while in casa nhs, hope we’ve not offended you, it’s pants when you are in there but the safest place till neutrophils are back up, it’s just 😤😤😤this whole thing. I just went loop the friggin loop as Shirley valentine said in the movie, and I’ve stayed there ever since 🤪👭👭👭💕💕💕✨✨✨✨Shi xx
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Re: June 2018 Chemo Starters

Bit late, but just catching up. Georgie the sensation you are describing when trying to swallow is exactly what happened to me after my second T. I couldn’t even swallow my own saliva and it was excruciating to swallow anything more! I just assumed it was a normal SE and put it down to indigestion. It went away eventually and was not as bad T3!!!
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Re: June 2018 Chemo Starters

Just received an extensive survey asking about the treatment received for my cancer.

They'll wish they never asked.
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Kip Community Champion
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Re: June 2018 Chemo Starters

Ha ha love it!!!  Watch out Georgie here we come

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Re: June 2018 Chemo Starters

Kip

 

Shi is totally beautifully bonkers.  And just to add to the madness here are a pair of the sparkly pants for you to wear when you are breaking Georgie out

 

H xxxx

 

Spangly pants.jpg

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Kip Community Champion
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Re: June 2018 Chemo Starters

Omg Shi, nearly wet myself laughing!  Ive found the drive mode, got my drain in a holster and am ready for Operation Breakout!  Listen out for us Georgie we will be coming over the hill, wearing hot pants, tin helmets and blaring out.".I want to Break Free" ....  Its an under cover operation obviously..  so don't tell any one!

Captain Kip

Xx

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Shi Community Champion
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Re: June 2018 Chemo Starters

Hi Georgie gee 😁😁😁bit of kylie spinning around and twirl your way to the loo with the drip stand 👍day practicing for tomorrow’s strictly 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻 😁😁😁I had a casa nhs stint during chemo and found keeping 😁😁😁and 🤣😂🤣😂🤣with the love and support from all the amazing ladies on here really helped 😘😘😘hope we can do the same for you ❤️❤️❤️Kip, have you found the drive mode with the tank yet? We’ve Georgie gee to get out of casa nhs 👩‍🎨👩‍🎨👩‍🎨👩‍🎨💕💕💕✨✨✨Shi xx
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Re: June 2018 Chemo Starters

Shi, 

 

Do you you suggest I do the Macarena with my drip stand?..... I am attached!!!!  💃🏼😬.

 

Kip, I really wish I had my own room, but I don't.   They are going to see whether I get any better over the weekend, and then review me on Monday morning.  

 

Gee

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Shi Community Champion
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Re: June 2018 Chemo Starters

😂🤣😂🤣😂sorry text gremlins changed agado to shadow, bet you thought what 🤔🤔🤔xx
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Re: June 2018 Chemo Starters

Georgie gee 👭👭👭sending you big ❤️❤️❤️Time for a mission set for you 😁😁😁😁 me and kip dare you to macerana to the loo next time you go and report back how many funny looks you get 😁😁😁😁 report back 😁😁😁and as they give you your tea in the morning an impromptu shadow, do, do push pineapple shake the tree 🤪🤪🤪🤪, love you and keep 💪💪💪💪💪were on our way to help you 🥊🥊🥊🥊🏹🏹🏹🏹🏑🏹🏑🏹🥊🥊🥊🥊it and get you home, kips picking us up in the tank 👍💕💕✨✨✨Shi xx
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Kip Community Champion
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Re: June 2018 Chemo Starters

SallyG whatever you meant it made me laugh!  Shame about the asda ones not fitting, nightmare finding suitable things isnt it, my bras all rub on mh drain at the moment but thr nurse tlld me tk wear one if i cantohelp the scar flatten again.

georgieGee, sorry you are spending another night in Casa Nhs, hope you can swallow soon, that sounds terrible, jope you are managing to sleep ok, are you in yourown room?

Kip

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Re: June 2018 Chemo Starters

Hello from the hospital

 

Yes, I'm still here.  I am finding swallowing really difficult, even pills and liquids. So am on IV fluids and antibiotics. It seems like there's something stuck in my throat that stops the food or whatever going down. 

 

So the doctors want to keep me here and I can see the sense in it, even though home would be nicer. 

 

Its good to keep up with everyone else on here and see how you're all doing.  Thanks for all the good wishes and I hope you will all enjoy your weekend.

 

Bye for now,

 

Georgie xx 

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Re: June 2018 Chemo Starters

Oh bum! I meant large breasted!

I've got 3 Asda bras but they're not cut right.
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Kip Community Champion
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Re: June 2018 Chemo Starters

Hi sally, just had a giggle when i read your post, did you mean "Large breast fed ladies" .  Or did you mean large breast feeding ladies,. I  had visions of large ladies bejng breast fed which tickled me!  Have you tried asda on line bras?  Ive never really been jnto ljngerie so not usd to beautiful things but these are fine foe every day and j am also small chested, A cup and find thse fine.  If j wanted something special j would probably go elsewhere but these are pretty.

kip

Xx

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Re: June 2018 Chemo Starters

It's not that I particularly want 'nice' bras, just comfortable ones. They mostly all seem to be ' construted' of the type that large breastfed ladies need to wear. Having always having quite small bobs I really can't wear those. I can't even wear clothes with tight sleeves because of feeling constricted, not to mention the constant hot flushes.