May 2017 chemo starters

[treehouse]

Sorry you have had such a tough time AnnieA. Particularly the sickness 😕. That's not good sending hugs 🤗.Hopefully they will up your goodie bag 💼 next time so you don't feel like 💩.

Good luck with blood transfusion, treatment and onc today ladies.
Heavy rain ☔️ here.

[AnnieA]

Morning lovely ladies, I just thought I'd pop on an leave an update 1 week after Taxotere. So I spend from Thursday until this morning in bed, pain and discomfort in my back, tummy and legs. Had around 6 hours sleep from Thursday to Monday. Monday I got stronger painkillers and some sleeping tablets from my GP and I've woken up feeling half human again. I had the red face thing on my first day and was told to take piriton and yesterday was the first time I've actually been sick throughout all my treatment but anti sickness cleared that up. At least I'm prepared for what's to come next time.
Hope everyone is doing as well as can be x

[treehouse]

Woolfee yes I have had horrendous wind 💨 my family have put up with it for 12 weeks now. So glad I am not the only one!
Red face lasts a day or 2. X hugs

[WolfEE]

Katie11, glad the cover turned up that was quick. I packaged it while sitting at chemo and posted it fairly late Monday so good going.
Enjoy the bath it will help so much that was the one thing I missed so much and still not perfect with the sleeve but a shallow bath it still is and does the trick. X

[Rosie65]

Thanks treehouse, it sounds as if you were worse than I am although a few times I have felt like I could faint and have had to grab hold of something to stop myself.  I'm looking forward to feeling a bit better.

After Thursday I still have 8 more although being weekly they can be ticked off quickly. The lump has shrunk to almost nothing so I keep thinking why can't they just go to surgery now, but you just have to trust that they know what they're doing.

I'm sure my Epsom salt bath and big girl pants will help me get through it!!

[WolfEE]

I don't have a Bristol chart (about to look it up) I was told that the consistency of toothpaste was what to aim for with the fissher problem! However, now I've started on the T and my steroids stopped today I'm wondering if I should reduce the number of 'get moving drinks'? Will this make any possible opposite affects that could come with the D worse???
I'm only on 2 tomorrow day 3 (1st day no steroids)
Sorry not sure of the least offensive wording but this evening I have terrible terrible wind (glad no visitors tonight) could this be a sign of something 2 come? I've also just woken up from a nap feeling very hot and very red in face.

[WolfEE]

Rosie, big hug and strength. It's hard it's crap it's all awful sometimes but you can do this. We are thinking of you and giving you a gentle push along the way.
Xxxxxxxxx

[treehouse]

Oh Rosie big hug. I know exactly how you feel. I couldn't walk into the hospital for my transfusion I had to stop twice. So exhausted and racing heart. That scared me!
I was so weak I fainted twice and they had to move me to a bed.
Each unit takes 2 hours and I noticed the difference after the first bag. I wasn't 100% straight away and came home for a sleep but was much better within a coupe of days. So glad I had it and would do it again if needed.
I know when you have appointment after appointment you just want it to stop and have a break. It gets to be hospital overload.
Big girl pants time. You can do this!!!
How many more?
Whenever I wobble hubby keeps reminding me only 2 more. I feel like shouting 'you try it !' but I know he is right .
Here for you Rosie x x x x x

[Rosie65]

Treehouse - when I went on Monday oncologist said she would refer me back to surgeon to discuss surgery. She asked what I was thinking of doing and when I said bilateral mastectomies she said that's exactly what I'd do in your situation (brca1)  I think the reconstruction will come later. My sister had reconstruction from her tummy fat and it looks really good.

My hb level has dropped again so having blood transfusion tomorrow. Really feel achy and very lightheaded so hoping I will feel better. Have to go to the hospital every day this week, went for cross match of blood today, transfusion tomorrow, chemo Thurs and heart scan on Friday. Am really fed up with it all, with two weekly EC and now weekly I feel there's been no let up. I just want a normal life again. Am definitely in marshmallow territory at the moment.

Thanks curly for reminding me of the Epsom salts, I bought some and forgot about them so think I will have a bath tonight.

Mai - at least you have the advantage of the Bristol chart to check, lol - is it available on the internet?

[Mai7]

Lol, Treehouse! 🎈 

[treehouse]

Thanks MJK. Radio has been mentioned for gland in collar bone so not sure how that would affect things.
Are you planning on reconstruction later or happy to stick to prosthetic?
Mum has falsies, has never bothered her. I am in awe of my mum. ❤️

[MJK]

Treehouse, I didn't have reconstruction but had disolvable stitching/glue so they didn't need to take them out. I was on overnight and home the next day.I had the drain for 3 days. I'm 43 too and was advised that I'd need the implant replacing twice in my lifetime (assuming I live to a ripe old age). For me because it came first and involved a big tumor, small bust and infected lymph nodes I knew that I would need radiotherapy over a big area which meant a high failure rate so decided not to risk it. Check if you'rehaving radiotherapy and if so when and how much. X

[treehouse]

Good on you busy bee. Thinking about other women in the future if we can help them. So many must have done trials in the past which have benefited us.
X x x x

[busybeeS]

Hi Treehouse. I'm all for doing the trial. I know how important it is to get a good sweep of people to either prove or disprove the effects of drugs on these type of trials. They are testing 2 different strengths of aspirin vs a placebo. 1 tablet a day for 5 years. So no quick results, although I think the trial has been going for a a while already.

Good luck with your decision on the surgery. I know it's a big decision to make. Your surgeon will be going for the best outcome so take on board what they say as well but go armed with your own questions as its your body.

[katie11]

Ha I know, always wanted boobs reduced and lifted! Just a drastic way to go about it x

[treehouse]

Sounds like you had enviable boobs. I think secretly I am hoping for an upgrade on my 2 week old party balloons 🎈 😋

[katie11]

Ha, neither treehouse, it's just like a lumpectomy but more of a reduction and lift taking out lump in the process. I was home same day had two drains as I had the other side done too. They stayed in for a couple of days. My friend had a single mx yesterday and flap reconstruction . She has to stay in around 5 days and will have drains through her stomach too. Just make a list of everything you want to ask so you don't forget if they don't mention it. They do go through everything in detail though. I have lymph removed for testing at the same time. Couldn't drive for 10 tens and had 2 weeks off work. Was up and about quickly though and they get you to exercise your arm but again breast nurse went through it all x

[treehouse]

Sorry Katie me again did you have implant or flap.
If you had implant, how long is its guarantee so to speak? I am 43 would I need them replacing? Oh so many things to think about. 😳😥🤔

[treehouse]

Do you have drains etc? How long were you in hospital for?
What about stitches and dressings etc.
God I sound clueless. I have been in chemo mode for so long I really should do some research on the next stage.

[MJK]

Treehouse, even if they remove the nipple they can build a 'new one'. Be aware that with any reconstruction there will be little or no sensation in the area. They should be happy to do the double for you. Z double with reconstruction will mean a longer recovery than a simple, single Mx so make sure you have help after surgery. X

[treehouse]

Thanks Katie that helps a lot. Big hugs to all of you.
Feeling a little more prepared and less wobbly.
Good luck with treatment tomorrow x

[katie11]

Treehouse, I'm sure you can insist on double mx with your genetic results. Think that was discussed with me when I went for testing.

As for nipple. Mine was saved. My lump was high up too so that's why I had a mamoplasty. It's an upside down t shape that starts under the nipple and goes around under breast. It would have disfigured mine too much with lumpectomy. But guess if you go ahead with double mx it won't make a difference. Just make sure you state what you want to.

Thanks so much for the shower cover wolfee. It arrived today very quickly. Might have a bath tonight. Hope you are feeling OK?

I had my bloods today, love with a picc line the district nurse comes to me for bloods. Lol! All set for no 4/9 weeklys tomorrow! Xx

[treehouse]

Thanks ladies I knew I could count on you. I was initially told that the cocktail I am on has a good chance of completely disappearing the lump so they wanted to just do a lumpectomy to remove clip and surrounding tissues. However I have tiny boobs so not much tissue to move around and fill in the dent as lump was high up near cleavage so scar and dent would be visible in any low clothing. I I'm not too bothered about that.
HOWEVER now I have positive genetic test results I just want a double mastectomy with reconstruction. No flaps as I don't want any other bits of my body messed with.
What if they don't want to do both?
I am terrified of having to go through all this again . My mum did it 3 times and I have often questioned why they didn't just take it all away the first time or the second....
Also with the position of my lump I want to know if I can have nipple saving surgery. I know you can't answer all my questions.
Ladies can I ask what is your nipple situation??
I think I will really miss them in the intimate moments if you know what I mean. Sorry if I have taken this forum in a new direction .

[MJK]

Great news Katie. X

[MJK]

Hi Treehouse, I had a single Mx with lymph node clearance in April. It was all straight forward and I was up and about within a few days. Doing the exercises are important to get arm movement back. I was back to normal in a month apart from some numbness in the upper arm from the lymph node clearance. I would recommend getting crop tops 2 sizes too big as you won't get into your usual size for a bit, I put them on feet first not over the head. Button down the front tops are also a good idea. Emotionally, the biggest feeling was relief. My lump was the size of an apple so I have a 10 cm scar but it's faded a lot already. X
Blood test done but feeling wiped so not sure. Oncologist appointment tomorrow morning. X

[Mai7]

Katie, pleased to hear your genetic results were negative.

Treehouse, don't worry about gaining a few pounds - at least you'll be able to build up your flap reconstruction sites ready for surgery. I'm worried that if I lose much more weight, I won't have a flap anywhere! I think my best hope is my inner thigh, definitely boob potential there!  Do you know whether you'll needs rads yet as I think that can influence your options? 

[katie11]

Just had my results from genetic tests and it's negative for any genetic reasons. So relief.x

What kind of information do you need treehouse? I had a mamoplasty in March and reduction on other side. My surgeon went through options and what he thought was best. I also had decision to have reduction on the other side at the same time. The breast nurses also go through in depth your surgery and show you pictures etc. I was more worried about chemo than surgery as at least I knew it was gone. Suppose your surgery will be more complex if discussing genetic implications. Just remember it's another step on our journey. Chemo is the hard part , you can totally do this xx

[Raitchr]

Treehouse, re surgery I had single Mx  no recon in March and it was straight forward, quick recovery as did exercises from physio. What kind of info do you need so I can help?

Heather

[treehouse]

Busy bee. Really interested to hear you mention a trial with aspirin. How do you feel about taking part? What information have you been given ? No one has mentioned trials to me but I expect there are strict requirements. Keep us informed of your decision. I find that really interesting but with my science background I get excited about the MRI scan lol.

[treehouse]

Good luck tomorrow curly and Kala. One more step closer. X 🤗

[treehouse]

Really glad the picc line fittings are going well. I can understand anxiety but all you brace ladies have said it has been better than expected which is great.
Mai yes I am soft and quite regular which my bottom is thankful for. I found the first treatment gave the most severe side effects. I still get them but half as bad. Unfortunately I have not last any weight, I have put on over half a stone. No point trying to deal with that until after chemo. I am eating whatever my body demands especially to combat nausea week 1.
Any advice or words of wisdom from ladies who have already had surgery please. Trying not to freak out but I keep leaking today 😢

[Mai7]

Treehouse, the slap-cheek seems to have calmed down now thanks. I don't have diarrhoea but am going about 4 times in the early morning and my intestine feels very heavy during this time. I'm a Bristol no.4 (sorry TMI folks). Do you think it's a problem going too regular even though it's not like Bristol no.7?  I have some Imodium so could enforce a slowdown if need be!  Try and get a good nights sleep tonight - no one should be left awake thinking about their surgery. Just thrash out all the options with the consultant. Write down everything going on in your head now so you can brain-dump before bed-time. That will help you sleep. Xx

MJK, hope your blood test went ok today. Xx

[curlyh]

Hi..WolfEE got my daughter to do injection...she was quite pleased she is training to be a children's nurse ATM..so is very helpful but can be quite straight to the point sometimes when in nurse mode!! Just back from hospital getting my Picc line fitted...it went well the lovely man doing it said the swelling I have is superficial and definitely not dvt so fine to go ahead...arm achy but fine so hopefully first doxetaxol will be straightforward tomorrow..bloods fine, must get the Epsom salts you have all mentioned...Kala I know what you mean, my friends have generally been great especially at my operation time but during the chemo I think people find it difficult, and sometimes it is difficult for us to put on a happy face and be interested in all the fab things other people are able to do while we can't...hope your bloods are fine MJK for your treatment thurs....and hope everyone's se manageable 😀

[treehouse]

MJK good luck with bloods today. Let us know how you get on.

I am seeing surgeon tomorrow to talk about what next ( I also have an appointment through to see gynaecologist in October re ovary removal) Trying not to think about it today but I think it might be another thing to keep me awake tonight 😕

[treehouse]

Kala seriously anything goes here, emotions to bowel motions we get it. 😁
Mai how is the red face today?
Jay & Mai diarrhoea is a side effect but it must be managed. I get it 2 or 3 times near the end of each cycle. I have loperamide hydrochloride which is Imodium from goodie bag. I take it after first bout. That usually sorts me out for a few days. If it lasts more than 24 hrs call the help line as it could be a sign of infection. My onc is quite strict with me on this. Don't just wait for it take its course .

[Raitchr]

Kala, cancer and chemo is definitely a time to see who is a good friend. Mostly mine were there to start with at diagnosis and surgery time but they gradually got on with their lives. I get it, I did the same to another work colleague who went through BC 4 years before me. They feel guilty getting on with their lives whilst we are stuck in neutral just coasting until the end of treatment. I do have a lovely bunch of friends closer to home than at work and they have been there through it all, the hair loss, the red wee after FEC, laughing at the thought of going swimming with me and my softie boob, constipation, and all my tears in the playground.

Part way through chemo it all got too much and I took timeout from this group and another forum I was on. I just didn't want to always think about chemo. I came back once my head was sorted, got control over chemo side effects and actually missed the funny comments on here as we share everything.

Just share on here when you need to off load or loiter in the distance when you need to, just know that we are all here for each other. 

Best wishes for your treatment, you can do it.

Heather

[katie11]

Big hugs to kala. We are all experiencing the same issues physically and mentally, so it's good to talk to others going through the same. We all have good and bad days but here we can pick each other up when needed. Don't worry what you want to say we get it so get it off your chest!

Everyone else doing ok? Xx

[Jay68]

Hi Mai - I must say, day 13 today - and for me the explosive diarrhea has become even more real!  It really is the speed at which the bowel seems to work!  I've learnt from my first session of Dox (etc) where I spent a morning in A&E getting checked over - that it is quite a common side effect for this chemo and basically the best thing to do is let it take its course and drink plenty - I was prescribed some meds by the Oncologist if really bad but to be honest it's bearable - if you can get to a toilet quick!!!  Today, I see that I've got some peeling of the skin on the palms of my hands - that happened last time but on the fingers only - you definately need your Udderly creams to the ready!  Oh yes the joys of chemo! J x

[Mai7]

Hope you have a good day Kala and best wishes for tomorrow. Just post in here if you need to offload anything or ask for advice, we can handle it. Sometimes friends just don't know what to say. I certainly had well wishers at the time of diagnosis but most people don't keep it touch as they're probably scared of the big C and how to deal with it so burying those thoughts is their coping mechanism. I think most friends are still there for you but are waiting patiently for you to get through this as only you have the strength to do that, only you can get yourself  through this.  It really is a mental and physical journey. We have marshmallow days here where we feel weak and soft and help each other to get the big girl pants back on, and that's ok.   I hope you have people around you to help out with chores etc. 

Jay, i hope your mention of day 8 onwards explosive diarrhoea isn't true for me. I'm day 6 and this mornng I was up at 3am, 6am and 8.30am for bowel movements. Not diarrhoea but my bowel seems to be processing food too fast that I'm worried I'm going to lose weight.  I had some diaralyte this mornng to rebalance electrolytes and will carbo-load today to try and slow things down a bit. The joy of chemo!

[Kala]

Morning ladies. I wanted to tell you guys something because I feel that I have joined a really good group here who actually understand what I'm feeling. I don't have many friends as I have been let down so much n the past and so since my diagnosis I have tried to deal with things within my family. They are great but they don't have cancer and sometimes it's difficult to say to them what I'm actually dealing with. The one good friend I have has so many of her own issues that I'm more like her councillor helping her which I love to do but she can't deal with my problems. I put a few comments on here before but again I felt that I was being too pushy so I kind of left for a while. I looked two days ago and saw that you all write down almost everything and the responses you receive are so uplifting and make me feel like I'm not alone ,even though I can't see you at all. 

There was a time when I thought I'm done here, I'm not able  to do chemo no more. 

Since then I am ashamed I thought like that and realise I can do this. I'm not afraid of pain of being sick . I'm afraid of not having no one to talk to when I'm feeling it but now I have you lovely folk to talk to.

Mai, Wolfe, Jay, Raitchr and everyone else on this may thread I'm thankful for your kindness. 

Now going to take my steroids and go get my bloods done and pray they are okay for tomorrow. I hope you all have a very peaceful day. The weather is not good and when I was in Sainsbury's yesterday I heard someone say we are getting terrible weather tomorrow so I'm gonna drag out my wellies and long coat as the dogs won't walk themselves xxxx

[MJK]

Great news WolfEE 💃💃💃. I hope you're feeling ok this evening Enjoy the pampering tomorrow Trisha. Glad you enjoyed the 🚂Treehouse (my son is train mad) and had a day feeling 'normal'. Big hugs Curlyh, I'm a day behind you with 1st T on Thursday. Hi Jay and Kala, good to hear from you both. I've got blood tests tomorrow, I've been feeling run down so spent the last 2 days resting in the hope of getting the count up. Mai7 I've had the hungry but everything tastes of cardboard thing with the FEC so thinking of you. Hope you get good night's sleep everyone without early morning 💩. X

[Jay68]

In the chemo unit I go to they have all the drugs necessary if you have an allergic reaction - they stop the drip - administer drugs and wait - then continue if safe to do so. Yes you can take an iPad - you'll have one hand which is free to use - the other will be limited by the cannula. The steriods also act as an inflammatory - so when the chemo poison hits your system - it's ready! We have to be strong and positive - we must beat the evil disease x

[treehouse]

Hi Kala glad you have joined us. 😊
I have all 4 drugs on the same day. It takes 6-8 hours. They have got faster as I am more used to it. Make them go slow and yes they are ready for any bad reactions. I had chest pains for round 2. They paused immediately took me to a side room for an ECG . It was fine but they continued at a slower rate and gave plenty of saline. They will keep an eye on you but don't be afraid to tell them if anything feels odd including jaw pain. They know what to look out for.

We had a great day on the steam trains 🚂 lots of giggles and forgotten about C for the day. I did way more than my 30 min walk at the station towns 🚶‍♀️Great start to the summer holidays.

[Jay68]

Enjoy the feel good makeover tomorrow trisha69, I'm having 4 herceptin with the dox chemo and then 12 months of injections once chemo is over - every 3 weeks and yes they're done in the top of the leg! x

[Kala]

Gosh you guys are amazing. I posted only this a.m and I come home to such reassurance. Thank you so much for your replies and helpful information. I know I will be very scared but I will take the advice on board and stay calm as the drugs are given. It's a case of face the fear and do it anyway. 

Im having the doxytaxol first then the herceptin and perjeta

the next day which is an all day stay. 

Will they have drugs on site if you do have an allergic reaction as I really want to carry on with the treatment if I do have one. 

Can you take an iPad in to play games to take your mind of what's going on as reading a book I think will be hard. My lovely daughter, Anneliese is coming with me both days which I'm so pleased about. 

Tonight im drinking ginger  and lemon tea with ginger nut biccys. Tomorrow I start my steroids lol 4 in the morning and 4 at night then 4 the following morning before chemo. Jeesh I'm going to be flying 😊

Thank you all again as you really have given me reassurance for the next week. Xxxxx 

You are all such amazing strong ladies and so so positive, it's a joy to read all your comments xx

[katie11]

Glad it went well wolfEE xx

I seemed to finsee that when I don't know what I want to eat , fresh fruit and veg seems to hit the spot more than most stuff?

Hope you enjoyed your first day of school holidays everyone? How was your train trip treehouse? Had quite a fun day with boys and have had a doubles tennis game once hubby home. Nice to have some fun for a change x

[treehouse]

Good news Wolfee. How were your RBCs?
Look after yourself and rest when the steroids run out.
I know what you mean about not knowing what to eat Mai. X

[Mai7]

Glad today went well for you WolfEE. 👍🏼 

I've been pretty low on energy and don't know what to eat as everything is bland and my taste buds don't know what my tummy wants! I came up with a good solution. I steamed some butternut squash, broccoli, spinach, cauliflower and onion, then mashed them together with spices and a can of chickpeas and fried it up like bubble and squeak. It was supposed to be more like a veggie burger but bubble and squeak was good enough! 🍔

[WolfEE]

Curlyh, sorry about your clot it's a real worry did my head in with panic when I found out about mine. How are you getting on with the injections I've been doing mine for almost two weeks now and still struggle but I am becoming faster and less hesitant. I think I'll be having them for quite some time. My GP called me today because he had my repeat prescription for the injections. I asked him how much at risk am I from the blood clot (he did refer to mine as dvt although I don't believe so far I've ever been officially told?? He said that now treated with the injection it is relatively safe it will stop it moving to lungs but be aware of any chest pains and signs of hard breathing if any signs get straight to a&e but it shouldn't happen just be very aware. Xx

[Trisha69]

Well done wolfee x