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May 2017 chemo starters

Trisha69
Member

Re: May 2017 chemo starters

Home safe ladies and locks beem changed!

Had Herceptin injection Monday and today I ache all over.  This normal? xx

Rosie65
Member

Re: May 2017 chemo starters

Jay - yes the SNB is carried out under general anaesthetic. The results will determine whether I have reconstruction in November or rads and delayed recon next year.

 

Haven't managed to get out for walks lately, it's been all go since chemo finished. Still don't want to lose any weight and lose another cup size!! Apparently this recon is the only one where your breasts change size with your weight so I suppose could always boost them later on.

 

Hoping that after this week things slow down a bit. Have booked a long weekend away with hubby 20 Oct to Stratford (upon Avon, not East London๐Ÿ˜‚)

Mai7
Community Champion

Re: May 2017 chemo starters

Rosie, glad your appointment went well.  So if you put on a bit more weight does that mean you could have a bigger boob lol?! I'm also a C cup so about a handful of body fat for a boob, I reckon! ๐Ÿ˜‚

 

Treehouse, my patience with nail varnish usually runs out after applying the colour coat! ๐Ÿ’…๐Ÿผ  I usually just paint my toe nails in the summer (and don't have problems with toes scraping the walls lol!) and hand nails very rarely as I'm not very good at keeping up the maintenance of it. I just keep them short and well manicured. I will give the top coat a try though, thanks for suggesting. Can you recommend a particular brand?

 

Glad you're feeling better about everything Mishy. Come back to us anytime as we have a lot of bad knowledge at this stage in the journey (when I say bad knowledge I mean knowledge we'd rather not have but do). Xxx

WolfEE
Member

Re: May 2017 chemo starters

Yes treehouse get slapping thatbudder cream on. Iโ€™ve been using only a couple of days and I think improvements ready. Iโ€™ve just put it on now infact.

Jay so yours were taken out at Home. Iโ€™m going to the Breast clinic so Iโ€™ll have the hospital couch bed thing but Home would be nicer.
treehouse
Member

Re: May 2017 chemo starters

Oh oh or should that be moo moo . My udderly smooth cream arrived today ๐Ÿ„๐Ÿฎ๐Ÿ˜€
Jay68
Community Champion

Re: May 2017 chemo starters

Treehouse - yes I was laying down in a very comfy position on my sofa!

Well done on your walk and for going hatless too.

I agree totally we have all come such a long way xx
treehouse
Member

Re: May 2017 chemo starters

I would also be a wuss about drain removal wolfee. I would need to be lying down for that in case I faint.

Thank you my swimmers and walkers you gave me a push to do a 44 min brisk walk with hubby. Parts of it were hatless as I got so sweaty .

We have all come such a long way. X x
Jay68
Community Champion

Re: May 2017 chemo starters

WolfEE - take couple of paracetamol if they're coming out and take a deep breath when they pull - OUCH! Mine were close together and they were pulled together and it did sting lots - I'm not going to deny! but it only lasted 5/10 minutes...... x
Jay68
Community Champion

Re: May 2017 chemo starters

My goodness Rosie you have had a busy day!

In our area they have agreed all drains must be removed on day 5 regardless on amount of fluid coming out.

So is the SNB carried out under anaesthetic?

So are all your ops are happening this week?

Jay68
Community Champion

Re: May 2017 chemo starters

Well done WolfEE on taking a walk on day 5 with drains attached too!

I agree the discomfort coming from the drain site and I'm sorry to say that's still the case for me - they leave the holes to heal by themselves, ouchy! When are yours coming out?
Rosie65
Member

Re: May 2017 chemo starters

Ha ha WolfEE that made me laugh!! I'm a C cup so a B will be fine

 

I will be in hospital for my birthday, so my present to myself this year is a boob job and tummy tuck๐Ÿคฃ

 

I'm not overweight but my tummy was stretched when I was pregnant and I had 2 c- sections and no amount of exercising has ever got rid of it. Even when I've lost weight I've still had the tummy fat.

 

After what you've been through already I'm sure the drain removal will be easy.

 

The hospital I went to seemed very well organised they said they get people referred to them from all over the country.

WolfEE
Member

Re: May 2017 chemo starters

Rosie good news you can have the DIEP and November so you should be mostly healed and looking at a nice Christmas.
My hope is also to have this next year mine will also be a double but I think I have plenty of fat that size wouldnโ€™t be a problem (Iโ€™m only a B cup anyway) infact I wonder if the surgeon can take some extra fat I could offer to donate some for others who perhaps donโ€™t have enough????
And even better news if they can take the drains out before leaving the hospital. I may possibly be having mine removed Friday (if they have stopped draining) exciting that they may be coming out but petrified. Iโ€™m more worried about this than I was if the actual surgery!! Iโ€™m such a baby
Mishy18
Member

Re: May 2017 chemo starters

Thanks ladies for replying with some sound advice re BC nurse for anxieties, I had a call from oncology to say I have an appointment for Monday he returns Fri morning and they have added an additional appointment to his clinic on Monday looks like he won't be finishing on time! Yeah I am TN had lumpectomy and 5 nodes were removed in snb with 1 containing a, 18mm macromestases which was removed successfully as well as my lumpy which was 27mm with a further area of high grade Dcis which all had clear margins, def getting rads as was in treatment plan, I have lots of questions which may take some time so I hope he is prepared for a long appointment with me! Yes it was very frightening experience think this morning I woke up feeling the worst for weary but your replies have really helped me xx thank you everyone hope you are all feeling well x
Rosie65
Member

Re: May 2017 chemo starters

Have had busy morning at the hospital to see about having DIEP reconstruction. Left home at 9 and didn't leave there until nearly 2pm after that done the pre assesssment incl photographs!! Am suitable for the op but will have to go down a cup size as they are making two๐Ÿ˜‚๐Ÿ˜‚ But I'm really not bothered. Prov date is 8 November

 

After all this talk of drains I was pleased to learn that although I'll be in 3 - 5 days they take the drains out before you're discharged.

 

Just got to get through the SNB first at my local hospital I think they forgot about the mapping so now have to have it Thurs morning at one hospital and then go to another hospital for 1pm for the op!

 

Will be glad to get to Friday and have a rest.

WolfEE
Member

Re: May 2017 chemo starters

Yes on the nail polish scuffs everywhere. Top coat does help. I always had nail polish on prior and since chemo Iโ€™ve actually worn it less even though it could have helped. Luckily my nails have been fine a few ridges like tree trunk circles it was each cycle of T a new sort of ridge appeared but so far my cuticles are holding up. I did avoid them in the sun. I would always cover my hands in pockets or under sleeve when I was outside.
Yes Iโ€™m very paranoid about someone bashing the drains or one of the tubes coming out of the bag and hooking up on something. I have two fabric shoulder bags that I have cross cross over each shoulder and I have one drain on each side they really are a help and I donโ€™t know how anyone could manage without the bags. I was lucky a local charity make the bags and give them to the hospital so I was given mine however, I had already brought some on line quite expensive but worth paying out for.
I really think it would be impossible without them.
treehouse
Member

Re: May 2017 chemo starters

Have you tried top coat Mai? Makes it last longer and stops you sharing your colour with your walls. X
Mai7
Community Champion

Re: May 2017 chemo starters

Lol Heather, I now have an image of you as a shark gliding aerodynamically through the water! ๐Ÿฌ

 

Treehouse, post apocalyptic nails! Eek, keep putting the dark nail polish on. I get sick of touching up the chips and scraping it on white emulsioned walls and it leaving traces behind e.g., around the towel rail. I'm going to have to redecorate a few patches after I can take it off! Anyone else had that trouble? 

 

WolfEE, well done on going out for a walk. Must be a bit scary with the drains? Do you get paranoid about people bumping into you?

treehouse
Member

Re: May 2017 chemo starters

Itโ€™s a deal tatyana ๐Ÿ˜‚.
Nail update. So after 48 hours of no nail polish I have seen them getting worse. Not sure if it is due to water ( I have been doing lots of cleaning) or day light. Either way I have put the dark polish back on to protect them. The lower ( tip end) of the nails were starting to have white streaks and look like they are going to flake off in layers. Not going to risk it and if they are covered I will stop obsessing as I canโ€™t see them ๐Ÿ™ƒ
tatyana
Member

Re: May 2017 chemo starters

Treehouse, you and I should share an assorted tin. I love custard creams and Oreos!
Wolfee, well done to manage a walk. Go girl!
treehouse
Member

Re: May 2017 chemo starters

Well done Wolfee. I am very impressed with you getting out and about with drains. I hope I feel as good as you and Jay.
Thanks for the updates it really helps with those of us following in your footsteps x x ๐Ÿ˜˜
treehouse
Member

Re: May 2017 chemo starters

Good for you Jay.
Now tatyana I must object! I love a rich tea and a garibaldi ( squashed fly biscuit)
But you can keep your orios and custard creams ๐Ÿ˜
WolfEE
Member

Re: May 2017 chemo starters

Iโ€™m on day 5 of surgery recovery today and still feeling good. The only real discomfort I have is the drains where they are going in (or coming out??) Iโ€™ve now covered with a kind of sports bra the area so I donโ€™t catch it and it feels more secure.
I managed a walk with my dad just now up the high street and in to the chemist and coop and then back home. Itโ€™s not overly far but is quite a steep hill on the way up. Feel good for getting out.
Jay68
Community Champion

Re: May 2017 chemo starters

MJK - which area or areas are you having the rads? I'll find out more once I've had the appointment with the onc.

and yes I did, I had 3 naughty biscuits!!!
Jay68
Community Champion

Re: May 2017 chemo starters

I quite agree Treehouse, very confusing!  The pathology report showed no signs of cancer at all - everything had been eradicated by the chemo.  The breast nurse was equally confused - which obviously helped the situation!  No concerns about my neck previously.  I did have a CT scan and bone scan before chemo started and they were both clear.  I will be asking lots of questions!  At the end of the day I agree, if for my long term benefit it's good to throw all they can at it!  

treehouse
Member

Re: May 2017 chemo starters

Jay a bit confusing that you got the big all clear but now they want to do rads. Did they have concerns about your neck early?
Ask lots of questions but the bottom line is throw everything at it just to be sure.
MJK
Member

Re: May 2017 chemo starters

Well done Heather! ๐ŸŽ–๐ŸŠ I hope work goes with your plans. After all, it's in their interests to get it right too. X
treehouse
Member

Re: May 2017 chemo starters

Awesome job swimming heather. And with hatless school run.
Well done walkers I have not been able to get back to it since last treatment maybe you have just given me the kick I need.

Mono boob ๐Ÿ˜‚ your husband sounds a hoot x
MJK
Member

Re: May 2017 chemo starters

Well done with the walk, wig and washing Jay, definitely worth a biscuit or 3... I'm currently in the company of a shrinking chocolate bar ๐Ÿซ. Sorry to hear you need radiotherapy but after chemo and surgery it's relatively easy. You'll just feel like you're in an episode of a sci fi program.

Soworrid, I had minor palpitations on the FEC but nothing like you describe. I didn't have any with T though which has its own 'delights'.
Raitchr
Member

Re: May 2017 chemo starters

Hi, have swum 30 lengths today, took husband with me, I am still faster than him, he says that's because I have less drag on my "mono boob"....

 

Still waiting for reply from work we phased return. I put in a request to work 1/2  day and use flexi time accrued on 8th Dec as fit note runs out 6 Dec and I work 3 days a week, 20 and 1/4 hrs. Then take 11 to 29 Dec as annual hols as accrued so much whilst off. Then go back 3 Jan and do 20% hrs in week 1, week 2 40%, week 3 60%, week 4 80% and week 5 100% but use annual leave and finish 1 hrs early for 2 weeks when up to 100%. That should bring me to Feb half term and booked that week off with the boys.

 

Hopefully that should be ok with them, advantage of working for local govmt with phased return.

 

Hope all well, knackered from the swim. Now hatless for school runs, onwards and upwards ladies!

 

Heather

Mai7
Community Champion

Re: May 2017 chemo starters

Heather, hope your boss agrees to your planned return.  I suspect he won't have a choice if you are on sick leave and have the support of your GP or a letter from the hospital.  I've chatted with my boss this morning and am hoping to go back late November on phased return whilst I'm on radiotherapy. Is anyone else going to work whilst on rads?  It will only be a short burst then Xmas rest before getting back into the full swing of it in the new year.

Mai7
Community Champion

Re: May 2017 chemo starters

Well done Jay on having a walk out and sorry you now have to have rads after thinking it was all over. Still better safe than sorry.  There is only one thing which will make you feel better......more biscuits. Chocolate hobnobs never hang around for very long in my experience! ๐Ÿช

 

WolfEE and Trisha, hope you are both coping well post surgery. ๐Ÿ’ช๐Ÿผ

Jay68
Community Champion

Re: May 2017 chemo starters

Thank you Tatyana I guessed that was the answer!  I've got a double chocolate type and shortbread in there at the moment - both of which are irrestable!  

 

I'm doing well - arm is not quite as stiff today which is good.  

 

However, I have just heard from the breast nurse - apparently following their discussions round the table with the onc team yesterday they feel I should have some rads to my collar bone area where one of the lymph nodes was removed from. An appointment is being made for me to meet with the onc to discuss.

 

tatyana
Member

Re: May 2017 chemo starters

Jay, there is no cure. Well, not until the biscuit tin is empty. When that happens,go to the shops and stock up with some kind of biscuit that you can't stand, maybe Garibaldi or rich tea. No more temptation!
Well done on your walk, it sounds like you're doing really well!
Jay68
Community Champion

Re: May 2017 chemo starters

OK so today I've managed a walk around the block by myself which took around 10/15 minutes!

 

I've washed and conditioned my wig.

 

I've pegged some washing on the line outside.

 

and in reward for all of this, I've become addicted to the biscuit tin - help!!!!

Mai7
Community Champion

Re: May 2017 chemo starters

Hi Soworridl, big hugs to you as you are finding the FEC a bit of a challenge.  I've had 7/8 FEC-Ts and have found the side effects different on each. During the FEC part I found that I got quite breathless in the first few days and had to walk very slowly.  If I tried to push myself I would feel light headed and feel my heart racing.  I would say just take it easy and as you are doing contact your Oncology helpline immediately if you are concerned.  I took the full dose of FEC but have only had one full dose of T and the rest has been reduced to 80% then 75% due to the impact it's having on my neutrophils. I was admitted to hospital 3 or 4 times due to neutropenia.  The T doesn't seem to have the same side effects as FEC but causes tiredness day 4-8 and a sore tongue which affects taste. I think reduced doses and delays can be quite common, I've read somewhere about 50/50. I'm sure the team will make the best decisions for your circumstances and have come across this many times before. For us it all feels very daunting though. Xxx

treehouse
Member

Re: May 2017 chemo starters

Hi soworrid
I have read that heart palpitations can happen with chemo for a variety of reasons. I had very fast heat rate after round 3. Resting heart rate of 120. This was because of low RBC count and I needed a transfusion.
I think it can be a side effect. Or anxiety or affecting an underlying issue.

I know this is the most annoying thing to hear but try not to worry and keep telling onc at every appointment. Call the help line if you are worried. Do you have any pains or just palpitations?
Jay68
Community Champion

Re: May 2017 chemo starters

Hi Soworridl - welcome to May 2017 thread!

Sorry to hear of your experiences.

Personally, I didn't experience any palpitations whilst on the chemo, however, I have read that the FEC does have an impact on the heart whereas T doesn't.

Now the particular reason for me knowing this is because I had herceptin and pertuzuab when I had T and both of those targetted therapies can cause problems with the heart muscle - hence why they give it only with T and not the FEC - I do hope this makes some sense to you.

I did find the steriods gave me a "rush like feeling" but nothing too severe.

When are you due the first T treatment?
Soworridl
Member

Re: May 2017 chemo starters

Hi, thought I'd pop a message here again as you ladies are coming out the other side of the chemo now. Wondering if any of you have experienced the same as myself. Having FEC-T treatment. Had the 3 FEC part. And all 3 time on day 2 or 3 after I have had a episode of major heart palpitations resulting in trips to hospital. 1st time stayed in the night to be monitored. 3rd FEC dose was redused but still happened.
Anyone else had this? Was it the chemo? Steroids? Did it go on to happen with the t part too.
Any experiences from you would be great.
Lots of hugs x
Jay68
Community Champion

Re: May 2017 chemo starters

Hello Mishy and welcome to May 2017!

I'm so sorry to hear of your experiences, it must be so frightening when this kind of reaction occurs and I hope you're feeling a little better.

As someone has already suggested, contact your breast care nurse - they are fully trained on dealing with anxieties and will be able to put your mind at rest.

I see you've already had successful surgery - was that a mx or lumpectomy? and were all lymph nodes removed?

I assume depending on the above they may well discontinue with chemo as you have had 4 lots in total but they may suggest rads which may not have been on the plan already.

I guess the best advice we can offer is not to worry - although that's much easier said than done - we all have the shadow of re-occurrence on our minds but in truth - anything can happen to anyone at any time - my best advice is therefore to concentrate on getting over this horrendous experience and to speak to the breast nurse until your onc returns from leave.

and the very best advice is to "keep smiling" - a happy soul is a healthy soul xx
Jay68
Community Champion

Re: May 2017 chemo starters

Good luck Mai for your bloods tomorrow and hopefully (fingers and toes crossed) your final chemo on Thursday.

I do hope your receive a positive response to your email Heather - that will give your body and mind time to repair and be ready for a gentle return to work. Is your job physical or desk based?

Keep goings rads ladies - time is flying by!
Mai7
Community Champion

Re: May 2017 chemo starters

Thanks Treehouse and WolfEE, keep shining that torch up the chemo tunnel for me and MisyAngel and Andi. ๐Ÿ’—

 

Mishy, big hugs, I can understand your anxiety as I think recurrence is the annoying parrot we all have sitting on our shoulder. Its great news that you had clear margins and the chemo is the belt and braces part which you've had a fair dose of.  They may consider another chemo drug or rads and will do the best they can to reduce your risk of recurrence and that's what it's about statistics and risk reduction.  There is a clinical trial underway called ROSCO which aims to work out which FEC-T drug is best for which breast cancer type as this is still unknown, so many of us are being over treated with both because of these unknowns.  Can you have a chat with your BC nurse about your anxiety and see if they can find out a bit more on the plan of action. The BC nurses can be really good at getting info out of meetings and updating you before your consultant appointment. Xxx

MJK
Member

Re: May 2017 chemo starters

Hi Missyangel. Big hugs from us all. It's awful that you're having such a rough time of it. I take it you had mastectomy and lymph node clearance first and the chemotherapy and radiotherapy are to mop up any strays. Your oncologist will have seen this before and have a back up plan. My oncologist said that if I reacted she would put me on weekly paxitaxol instead which may be an option for you (I think Rosie had this). Alternatively they may up the amount of radiotherapy. I hope the oncologist is back soon. If not then ask to see another one.

I think anxiety about recurrence hits all of us. There are things we can do to help. I found the book 'Anticancer' by David Servan Schreiber a useful read. Clearly, you won't be able to manage much at the moment but it's worth being aware of and adding them in when you can. If they move you on to radiotherapy (which I'm on) then turmeric and green tea massively boost it's effectiveness.

Big hugs. X
WolfEE
Member

Re: May 2017 chemo starters

Mishy18, how very frightening I canโ€™t even imagine how you must be feeling right now the confusion and worry. I think we all worry about reocurance myself I was going over my reoccurrence in my head before treatment on my primary had already started.
I know it wonโ€™t help right now but after youโ€™ve spoke with oncologist (annual leave is annoying delay for you) Iโ€™m sure they will have reassuring and other ways of attack and youโ€™ll feel more at ease and safer itโ€™s just the wait until that conversation.
Youโ€™ve had 4 treatments even though you suffered badly they all went through so those will have done something posative on the cancer. Will you be having radiotherapy? Iโ€™m sure there will be other options. I really wish I could say a bit more to help you out right now my heart is going out to you.
Please stay posative and keep in touch and let us know what they offer. Any time your feeling low or panicked come on line and one of us will be here for you.
Sooooo many hugs and best wishes coming your way. When is the doctor back from holiday?
How are you feeling now in general like physically are you over side affects? Xx
treehouse
Member

Re: May 2017 chemo starters

Hi mishy
Sending hugs ๐Ÿค— I completely understand your concerns and not being able to talk to your onc doesnโ€™t help. Are you triple neg?
I do know others who have had to stop chemo early due to reactions but that meant surgery was brought forward. Sounds like you have already had surgery and all is removed so that is good news.
I understand what you mean about needing a back up to prevent it coming back or treat if it does. There are other chemo drugs. You need to talk to your onc and see what is suitable for you.
Are you having radiotherapy?

Not sure if this help but my mum has had bc 3 times ( first one 30 years ago) Chemo was not an option then. She had surgery and radio for all 3
She is 74 and looking after me and my kids and kicking my ass as I fight this.
Try to stay positive x x x.
WolfEE
Member

Re: May 2017 chemo starters

Yep Mai, weโ€™re still here wishing you through it and hoping really hoping the mouth can be more subtle this last time I agree the mouth and taste really is the worst of the side affects (my personal opinion)

Ohhhh waiting on the email reply Heather nervous Iโ€™m sure but itโ€™s out there they will reply and be fine and then you can push that to the back of your mind again and concentrate on recovery and getting strong. I have been working as much as possible but always had the option to leave when I felt I needed to Iโ€™m so worried about commitment to long days and driving in rush hour traffic Iโ€™m not looking forward to it at all.
Mishy18
Member

Re: May 2017 chemo starters

Hi may girls need a little advice re T dramas I'm from July thread but I sometimes have nipped over here I have had to have T cancelled went for 2nd infusion yesterday suffered a severe reaction after 4 mins had mild one on first t then was admitted with Neutropenic sepsis day 10 they removed chemo immediately yesterday and was really upset to here I can have it again Ever! Waiting to see onc who hasn't returned from Ann leave yet to see what alternative options there are but warned from his reg I may not be allowed to have anymore chemo due to complications 3 hospital admissions our of 4 treatments worried as was a triple negative with a macromestases in sentinel node all removed with clear margins by the way, just recurrence anxieties and what could I have it I was to get one x
treehouse
Member

Re: May 2017 chemo starters

Fingers crossed for Thursday Mai. The โ€˜ waiting for bloods everything changes at the last minute โ€˜ if so frustrating and I found difficult to handle emotionally. Especially as the finish line kept moving which has a knock on effect on other things.
I am almost 4 weeks after last Chemo and 4 days after first herceptin injection and try to be normal but regret it. I think the Chemo side effects last longer than 3 weeks but we have steroids and another dose so we never notice. I know on my delay weeks I blamed it on low bloods.
This is the gift that keeps on giving.
We are with you till the end Mai. Moan about the yucky mouth etc as much as you like.
Good luck with the boss heather. Must feel strange having a date to prepare for. I think about going back to work but it still freaks me out a bit. Donโ€™t think I have the stamina for a whole day. Seriously considering going part time.
Raitchr
Member

Re: May 2017 chemo starters

Emailed my boss today to say I am not going back to work until 3rd Jan, and that will be phased return over 4 weeks. Waiting for their response...

Mai7
Community Champion

Re: May 2017 chemo starters

Nice one Treehouse, wig passing for real hair! ๐Ÿ’๐Ÿผ it's good when that happens as you need reassurance that you don't look like you're walking around with a cat on your head! 

Mai7
Community Champion

Re: May 2017 chemo starters

Magnetic MJK!  I hope you don't have an induction hob or things could get a bit heated! Check that you haven't accidentally reformatted your hard drive!  ๐Ÿ’ฝ  ๐Ÿ˜‚

 

My my last chemo is due on Thursday. I have blood test and Oncology appointment Wednesday. My sister is taking me to the last chemo and is getting her head around the blood test being weds but may be repeated Thursday and then chemo may or may not go ahead, in which case the visit will just be a blood test and a waste of time of work!  I'm just glad to be getting the last one out of the way (hopefully) Im feeling a bit tired lately so will be nice to get past chemo side effects and move on to the next phase.  Not looking forward to the sore tongue and eating cardboard food. That's the worst bit.