July 2016 starters

[Pookie1]

Thanks Bookworm. I'm having weekly taxol too, after the three rounds of FEC. Can I ask why you're having fortnightly ec rather than three weekly FEC and taxol instead of three weekly docetaxel? Sorry if you've already been through it, I tried to find previous posts but gave up after ten mins fruitlessly searching!

ps I'm absolutely loving having short hair, shame I'll only have it for a couple of weeks!

[Bookworm48]

I'll be fine Pookie and so will you tomorrow. It's the anticipation thing isn't it and in my case having EC fortnightly just doesn't give me time to bounce back fully in between but for me this is the right regime. Only one more EC after today and then weekly taxol so this is progress!! Your hair sounds gorgeous Pookie. I'm still cold capping ...... Good luck to all having treatment today/tomorrow. Let's kick cancer's a*** 😉 xxxx

[Bookworm48]

I'll be fine Pookie and so will you tomorrow. It's the anticipation thing isn't ut and in my case having EC firtnightly just doesn't give me time to bounce back fully in between but fit me this is the right regime. Only one more EC after today and then weekly taxol so this is progress!! Your hair sounds gorgeous Pookie. I'm still cold capping ...... Good luck to all having treatment today/tomorrow. Let's kick cancer's a*** 😉 xxxx

[Pookie1]

Oh Bookworm, sorry you're feeling wobbly. You've done it once, you can do it again. I'll be thinking of you today, good luck x

[Bookworm48]

Good luck everyone having chemotherapy today. Round 2 for me too today too. Feeling really wobbly even though I know what to expect but the staff at the unit are brilliant, so once I'm there they'll sort me out! They even did my bloods yesterday so I know I'm good to go today without any hanging round for blood results. I think I'm more frustrated that yesterday was the first day I felt vaguely human and now it's all kicking off again! But it's that anticipation thing isn't it plus I'm a first class worrier! X

[Pookie1]

Good luck today Taran and any other lovely ladies having round 1 or 2 today. Bella Boo, hope yesterday went OK for you.
Nellie, I hope your cold is better. Kids are such germy little blighters......trouble is, they're also too cute to stay away from!
Welcome Kath, I'm one of the few on this thread who has yet to experience the delights of chemotherapy, my first infusion is tomorrow. It has been five weeks since my surgery and it has actually gone quite quickly, but the anticipation and fear of the unknown is quite draining. It's doable though and just another hurdle to clamber over!

AJ, so sorry to hear that your skin has been playing up. It's a side effect that I hadn't heard about but hopefully it'll pass quickly.

i had my very long, curly hair cut off into a pixie crop yesterday. I showed them pictures of Audrey Tatou and Natalie Portman. The hair looks great, sadly, they couldn't do anything with the face ; ))

PICC line goes in today, feeling a bit squeamish about it....and I have no hair to hide behind ; (

P x

[Taran]

Good luck today Alex and Suze. I will be joining you for my second round. Keeping fingers crossed for few side effects for us all!

Kath, welcome. I had surgery in May and started chemo end of June. Really and honestly, the waiting is the worst part. Try not to cross bridges until you come to them. It is so easy to worry about every possibility. But we are all here too listen on the days it just seems too much to handle. We will all get through this together.

How's everyone else doing? The change in the weather has come at the wrong time for me, just as in needing to wear head coverings!! So after keeping a very short shave because of my sunburnt scalp, I got hubby to take the rest off last night so I can at least put sun cream on my head!! It's got a horrible rough stubble feel now, so I'm hoping what's left falls out quickly and I can be silky smooth instead 😂😂

[AJ_silver]

Thanks so much Sue, just knowing its kinds normal makes me feel a bit better about it xxx

[Alex2016]

Suze65, hope you get a good nights sleep in preparation for tomorrow. Fingers crossed we do ok with first session!
Mad hatter, have you got any further with getting a start date? Thinking of you.
X

[Kath64]

Hi Sue and H. So lovely to read your comments and knowing I can speak to others who are going through the same as me. It's really reassuring. Sue, the links are great, I'm going to be studying them in lots more detail! I'm really grateful for your help. X

[Sue H-S]

Hi AJ_silver,

Sorry to hear you have one of the rarer side effects....it may be a good idea to discuss with your chemo team to see, whether something can be done. Here is some more info

QUOTE 

Why Cancer Treatment Causes Acne

The cause of acne during cancer treatment can be a combination of factors. Chemotherapy drugs, medications used to treat side effects, and steroids can all cause acne to develop in cancer patients. Acne can appear anywhere on the body, but the face and scalp are areas where acne often develop in people with cancer. It usually occurs within days of chemotherapy or taking certain medications.

If you are concerned that you may develop acne during treatment, it's important to talk to your doctor. He or she can tell you if any of your prescribed medications, including chemotherapy, are known to cause skin conditions, like acne, and what can be done to possibly prevent it and treat it, if it does occur.

Treatment for Acne

Treatment for acne depends on a few different factors, such as type of acne, location, and severity. Oral and topical prescription medications can be prescribed by your doctor and there are several over-the-counter products available. The first step in treating your acne during cancer treatment is to discuss it with your doctor.

Considering it is a common problem with some cancer treatments, he or she can recommend the best course of treatment. In some cases, you may be referred to a dermatologist, who specializes in diagnosing and treating conditions related to the skin.

END QUOTE

Hugs

Sue xx

[AJ_silver]

Hey ladies,
Just windering if anyone had had a skin breakout after their 1st chemo, my fore head and chest are very spotty and tender and im starting to get spots behind my ears and scalp. Any tips? Aj xx

[haz25a]

Hi Kath,

Welcome to the thread. I had lumpectomy and 3 nodes removed in May, no node involvement but HER positive hence the chemo. I had my first TC chemo on the 4th July and am due to have my next one on the 29th July.

The worry and anticipation is much worse than you think, you'll feel better once you have the first chemo "under your belt".

There are loads of tips and support on here.

Best Wishes.

H.x

[Sue H-S]

Hi Kath

you might find this link helpful - as it refers to a post very much earlier on this thread and it does give you some ideas of how you may wish to prepare.

https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/July-2016-starters/td-p/102625...

Side effects will vary from person to person - we are all so very different! And, should you be unlucky to be getting some, which you find difficult to work with they will adjust your accompanying medication to ensure you can cope better the next time.

Another thread, which might be worth exploring in depth -

 https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

Hugs

Sue xxx

[Kath64]

Thanks. The surgery was OK and the lymph node removed was clear. It is hard waiting for the appointment for chemo as it gives me time to worry about all the side effects! It's good to know I can get tips on how to deal with it. Xx

[Flopsy]

Welcome Kath,

Many of us have started chemo already so can hopefully give hints and tips.

I'm more scared of the surgery coming up than the chemo I have had. 3 x FEC and 1 T&H

hope you are recovering from the surgery well and get some enjoyment summer time before Chemo starts

[Flopsy]

Sorry to hear about the sore throat Nellie. 

Hopefully by now you would have spoken to your chemo unit. They may not want you in Wednesday with an active cold that other patients could pick up from you.

Hope you feel better soon. Nothing worse than a summer cold!

[Sue H-S]

Hi Nellie55,

So sorry to hear you have picked up a cold.

Chemo treatment tends to be mainly based on your blood results. However it may be an idea to phone your chemo team, they should have given you the number, when you went to the meeting, just before you started active treatment. I am sure they may be able to advise you better than any of us.

Hugs

Sue xx

[Kath64]

Hello

I don't know if I'm in the right 'thread' but I have had my lumpectomy and one lymph node removed.  I will be starting Chemotherapy some time in August - I'm awaiting an appointment.  At the moment I feel very scared of it all.  Anyone else in this position?  thanks

[Nellie55]

Thanks Bella boo, will check out earlier threads. All the best for tomorrow's chemo, keep up those fluids girl. Well done not covering your head, will try that when the postie next delivers! Xx

[Bella boo]

Evening everyone. Nellie I'm so sorry to hear about your cold, unfortunately I can't answer your questions it might be worth seeing if anyone on the earlier threads have had a similar issue. Fingers crossed it might just be a bit of a cold and clear up in a day or two. It's chemo eve for me so I'm drinking as much water as possible. I've had a lovely week and now the weathers come good, such a shame I'll feel a bit grotty next week. Taran I've given up having anything on my head and even answer the door without a hat. Should have seen the postmans face 🙂  Supti please be reassured that it's doable, not pleasant but no where near as bad as your imagining. Some have a challenging few days but everyone on here has got through it and still going strong. Diana I hope your feeling better and over the worst. Make sure you all put your sun cream on this week, don't think I'll be seeing much if it but at least I won't burn my bald head 🙂 xx

[Nellie55]

Not sure how things are going to pan out this coming week for me? I'm due to have 2nd FEC on Weds. Am having a blood test tomorrow beforehand. Thing is our daughter, son-in-law and grandson came down from Cambridge last Weds on my 'good' week. Grandson was ok on that day but on the Thurs developed a cold, son-in-law had sore throat and came out with a cold Fri, daughter on Saturday, my hubby yesterday and last night I developed a sore throat! Been gargling with TCP 4 times today! Will my blood test be ok? Even if it is ok how can I go into chemo unit on Weds with a streaming cold! Not fair on all the other patients! Will my chemo be cancelled? I really don't need this!! Any thoughts anybody on what might happen? Xx

[Taran]

Morning ladies, hope everyone is feeling well today?? I'm on countdown to round 2 on Tuesday. Feeling ready for it. Just wishing it wasn't the same day school finishes for the summer!!!

Nellie, I'm quite happy without a hat on around the house. Only wear one if my head gets chilly (which is does quite a bit with this weather!!). Hubby thinks it won't be long before I forget I have no hair and answer the door without putting a hat on 😁

Welcome Supti, try and focus on all the positive things people say on here. While you are waiting to start chemo it is so easy to focus on all the possible side effects and it can seem overwhelming. But the reality is, very very few people are unlucky enough to suffer with too many of them. And the onc team are really focussed on controlling as many as possible with med adjustment. We really shouldn't be having to put up with things like nausea or vomiting, so if you find it a problem speak to them. Oncewild is right, celebrate the fact you have clear nodes. The sooner it is diagnosed and treated, the better. So that's really good news for you. Try and focus as much on the positives as you can. There will always be days when that seems impossible, but keep them few and the good days plenty!

xx

[OnceWild]

Hello Supti

Please be reassured that, as Sue says, we all react differently to chemo and really is it is not bad for everyone. I am 9 days after my first EC and, apart from feeling rough for the first two days, I have felt remarkably well to the point that I feel a fraud being off work. I am feeling so good I am planning to get back on my bike today for a long ride. I know I might have some side. effects this coming week as my white cell count falls but for now I am doing great. 

Celebrate that your lymph nodes are clear and think of the chemo as an insurance policy to ensure that any rogue cancer cells are destroyed - 'hit it hard, early' is what my oncologist recommends. 

Hopefully you will get lots of support from this site to lift you at this difficult time. 

[Sue H-S]

Hi Flopsy,

sorry to read you journey through chemo has been so challenging.

I must say - that I have experienced none f these issues - I am just getting ready for FEC number 4.

My Breast Care nurse is still supporting me with any questions I have  and I feel well supported by my GP practice and their nurses, too. Yes, I had to explain to my GP in detail, but once done - really well supported.

Now, where the FEC cumulative side effects really set in - they have organised a district nurse for me to have my Gcsf injections. Through my low week - I have always all of the support I could wish for.

Nausea throughout? That is surprising to hear, as most of the time, with a little adjustment of meds - it seems to be brought under control through chemo 1 and 2.

But I suppose we are all very individual and se's will hit one person worse than others.

I am not sure whether I should be thankful or not, lol - no T for me - all FEC....

Hugs

Sue xxx

[SUPTI BHATTACHARYA]

DIAGNOSED WITH HER 2+ BREAST TUMOR...GOT OPERATED ON 30TH JUNE...SENTINEL LYMPH NODE BOPSY REPORTED NEGATIVE FOR MALIGNANCY...DOCTOR SAID IT HASNT SPREAD..CHEMOTHERAPY WILL BEGIN FROM 27TH OF JULY....FEELING NERVOUS,SCARED.....GOD HELP ME..

[haz25a]

Hello ladies,

Not been on here for a few days so hard to catch up with individual posts. Hope you are doing well. Also, welcome to all the newbies. This is a great place for support and advice.

I'm now on Day 13 of first TC chemo treatment and "hopefully" (crosses fingers so as not to tempt fate) I'm over the worst of the side effects until my next treatment on the 29th July. I'm getting cheeky four days extra reprieve as my first chemo was on a Monday but all my dates were changed to a Friday.

I did however get my period yesterday, a week early too. Always something. I hoped they might stop during chemo or stop altogether in fact. I've just turned 48.

Hope you all have a good weekend.

Best Wishes

Hazel. x

[Nellie55]

Taran, pleased that kids are ok with shaved head, I keep touching my head as well. I am feeling more confident about leaving my head uncovered around the house although I haven't seen anyone without a scarf or hat on apart from hubby, our daughter and son-in-law and grandson who are staying at the moment.  Our grandson, who is just 1yr, saw me with hair one day, shaved the next and scarf the following day! But he still comes to me for cuddles so I can't be too frightening! Lol xx

[Nellie55]

Dianabrew, sorry to hear you had a grot night but better today, each day does get better! I became a bit obsessed about drinking loads to flush chemo through, just wanted to get this horrible poison out of my body. So I know how you feel. I kept focussing on that fact it was killing off the baddies! Xx

[Nellie55]

Amazing Sue, you have such strength and stamina, I'm sure your own business will do really well, I think you must be up for an award or something to recognise how you are managing to work, have treatment and set up your own business! Hat off to you!,!,!!,, just make sure you don't over do it. Sending you hugs xx

[Pookie1]

Hi Fluffy, welcome : ) I have nothing helpful to say as I'm having my first chemotherapy session on Wednesday, but I just wanted to thank you for admitting that you watch World's Strongest Man! My husband teases me that I'm the only woman alive who likes it ; ))))

[Flopsy]

Hi J,

I am one of the FEC-T success stories in that after 3 x FEC and 1 x T (and Herceptin) my lump has shrunk from 3.3cm to being barely there. It doesn't hurt any longer.

For me the worst part of Chemo has been the side effects. In that way, I have been one of the unlucky ones with persistant nausea, vomiting and lots of other problems. Now trying to cope with the side effects of the drugs for the side effects.

Also trying to keep out of hospital as infections repeated throught the FEC.

Hindsight is a fabulous thing and if I could go back in time I would have prepared myself better for what to do when the severe side effects hit and who to go to for advice if needed. If they offer a bleeper system through the hospital switchboard and you already know that the switchboard is overloaded - speak out while you are still well enough to.

The side effects from the FEC were culmulative so it got worse each time for me. The actual infusions went well but I never recovered inbetween.

Pack an emergency bag just in case you need to go into hospital and buy a bucket to be sick in.....

My breast care nurse (she said "here's my card and number, call me if any problems") left me high and dry ("did I not tell you that I can only help with surgical problems?") and it proved very hard to get help from the hospital.

I should have "planned for the worst and hoped for the best" rather than be my optimistic self. When my Oncologist said there would be no nausea and vomiting on T I should have said "ok what if there is?"

I've sure for you that this will be less full of problems as most ladies had only smal problems. It's just hard to tell before the event who will fall badly with the side effects and who won't!

[Taran]

Hi J, welcome. The anticipation of what to expect is definitely the hardest part. It's so true that everyone has a different experience though. I didn't suffer with nausea at all from my first FEC. The meds they gave me kept that really under control. But if you do suffer then let them know. There are plenty of ladies who have suffered and had meds altered the next time and not had it at all. So it's always worth mentioning.

Dianabrew, I'm sorry you didn't have a good night. I didn't sleep well the first few nights after chemo last time. Luckily got back to normal after about a week. Hoping you are feeling ok today.

Nellie, my kids have been fine with the head shave. They keep feeling it at the moment (so do I!!) But I'm sure the novelty will wear off eventually and they will just think it's as boring as my normal hair!! Lol

xx

[FluffyMittens26]

Hi J. Sounds to me like you are going through the same process as me. Chemo first to shrink the tumour. I had my first one on Weds. The forum ladies have told me that it has worked for them in shrinking it which has helped me stay positive as all the nurses at the hospital don't appear to have done it this way before. Good luck with it all. Xx

[FluffyMittens26]

Hi Ladies. Thanks to everyone for your comments. May I dare say that I enjoy dipping into this forum. As when you are thinking is this normal to feel this etc I can be reassured that someone somewhere has been there, done that and worn the t-shirt. Always helps. I am trying to keep my energy levels up by watching World's Strongest Man at the moment. Rahhhhhh!!!!. Xx

[J]

Thanks Emma.  It's the "not knowing what to expect " that's scary but as everyone says, we all react differently. J x

[Emma111]

Hi J

Your first session won't necessarily be 'hard'. Everyone is individual and what one person finds difficult with, won't be for the next.
Drink plenty of water before, during and after chemo. Nap when you want, go for short walks when you feel able and try to stay positive. And think of that #### shrinking with each treatment! Xx

[J]

Hello ladies. I am new to this forum but have been reading ur comments with interest. I was diagnosed 29 Jun and im having MRI and Marker fitted on weds before chemo starts week after (hopefuly). I'm having FEC-T and they think they can successfully shrink it before surgery and radio. Some of ur comments could have come from my own mouth (or fingers in this case) as I too am seeing humour in things that I should be scared or upset about. I think it's hysteria! 😊. It sounds like the first sessions gonna be hard.... nausea etc.... so not looking forward to that. Any advice for a first-timer?

[dianabrew]

Thanks Nellie for you encouragement. I had a bad night but am feeling a lot better. Could'nt keep any fluids down at all and started to obsess about the need to flush the chemo through. Would have gladly been attached to a drip.

Sue, I am in awe! As well as slightly concerned for you. Please don't overdo things. X

[Sue H-S]

Hi Nellie55,

thank you so much for your thoughts. So much appreciated.

I am very well, thank you - looking forward to 4th chemo next Thursday.

Yes, you are right - back working full time is quite challenging and does not leave time for much else.

Everything takes so much longer, as I pack a small rucksack with 2l of water, food for the day, thermometer and meds. Quite a kerfuffle.

Also getting ready in the morning takes longer than one should think, lol - my eye lashes are becoming less and less, so have to reluctantly apply many coats of Million lashes mascara - so I look ok. No one is noticing that I am actually a chemo patient, which is a great booster. 

Being out and about for 8 hours - 3 days a week on appointments and 'canvassing' is not really what one should do with a compromised immune system, lol, with a very disrupted sleeping pattern, challenges remembering words, difficulties concentrating, etc. It is managable, just. But I need to earn a crust and unfortunately have a rather ignorant employer. 

But as I am a 'doer' I am at the same time now setting up my own business, as well. I wonder whether I might b the first person, who is going trough active treatment, who is actually attempting that Great for filling the sleeples hours, lol.

But I do always take the time to look at the various threads - to support where I can - and this thread is doing so well! So much support for each other!

Hoping everyone is going to have a great weekend!

                                            

Hugs

Sue xxx

[Nellie55]

Hi dianabrew, so sorry to hear your reaction to first FEC. I fully understand and know how you are feeling I was exactly the same after my first FEC. I rang the chemo unit and they said the first 48 hours are the worst for nausea and vomitting, which was true. The waves of nausea don't seem to stop but they do. After 48 hours I couldn't believe how little the nausea was and I only got better each day. Do let them know and they will certainly tweak your meds for the next cycle, they have done for me and I start my 2nd cycle on Weds with a more positive outlook. I think you just don't how you are going to feel as its all new but once through it, you do feel more confident and better prepared for the next cycle. Just go with the flow (so to speak), sleep, eat do what your body tells you to do and drink loads and loads of water. Sending you hugs xxx

[dianabrew]

Hello everyone,

I had my first FEC today. It took ages to actually have the drugs coz the nurse couldn't find the results of the CT scan I had on Sunday .It was written in the notes somewhere all along ( it was clear of metastatic disease! Yay!) It put everything behind and the unit was really busy. I have a sneaking feeling the drugs were administered quicker than usual coz he said I would find it would take longer next time. Anyhow, despite my meds I have had awful nausea and been sick twice. Am on a respite between the waves at the mo. I feel half human again. Hat's ( or scarfs or wigs) off to you ladies for going through this so stoically. All in a good cause..☹️😁

[Nellie55]

Hi Sue, haven't seen any posts from you lately, do hope you are ok? I imagine your week back at work has really taken it out of you. Sending you big hugs xx

[Nellie55]

Well done Taran! It does feel so much better once the hair has been shaved off, sensible to not go too short with the sunburn! How have your kids reacted? What headgear are you using?

I'm finding my head is so sensitive but I'm getting used to the new look, now finding very short hairs in my hats!

Bella boo, I had a lovely lunch out with our daughter and I felt very confident walking around with my hat and scarf combination, although I did keep popping into the ladies to check it was still in place!!  I bought some shoes and they weren't in the sale but when I took them to the counter to pay, the bloke scanned the bar code then did some fast finger work on the computer and I got 25% off! Was it the fact I was wearing my new hat and scarf????? I will never know 😉.

Welcome fluffymittens, sorry to hear things have been a bit challenging on your first cycle but each day you do get better. I didn't get any bone pain until injections 6 and 7, unfortunately I can't take Ibuprofen so it was just paracetamol I used, but it does pass, the 2nd day after my final jab the bone pain had gone. 

Hope everyone one is doing ok xx

[Taran]

Hi ladies, hope you are all getting on ok.

How have things gone today Bev? Hope they put you at ease.

Bells boo, yes I have done it. Have a GI Jane look going on at the moment as didn't take it all off because of the sunburn!! So kept a little bit of stubble for now. Feels really nice actually. Have a feeling I'll be rubbing my head constantly while it lasts. Lol.

Hope you have adjusted to the no hair look Nellie? Mine feels lovely but I think it's going to take a while to get used to seeing it in the mirror!

Hi fluffymittens, and welcome. I've had surgery before chemo, but the good thing doing it your way round is that you'll know the chemo has worked if the tumour shrinks. Hopefully that will be reassuring for you.

xx

[Pookie1]

Hi AJ, I'd love to : ) Have just sent a request through to the moderator to allow me to set up the messaging as I don't think I've earned the privilege yet!! I hope your first dose went ok today....one down! xxx

[T]

Hi Ffuffy,

I have just finished my last injection and found that day 4 seemed to be the worst - take extra inbrufen and paraceeamol before and after to help the night aches - it does get better i promise x

[Bookworm48]

Hi Fluffy mittens. I too am on EC but again, post surgery. I'm having it every 2 weeks and due my second treatment on Tues just as I'm starting to feel better. Great! The bone pain is horrid isn't it. I found ibuprofen really helped. Is anyone else on 2 weekly cycles?

[Michelle 1976]

Hi fluffy mittens I had my first ec chemo yesterday but have already had surgery . Feeling icky still and was sick last night but hopefully will pass soon . Fuzzy head as well . Also having white blood cell injections but don't do needles so husband is doing these for me no bone  pain yet though . Hope you feel better soon . X 

michelle 

[Flopsy]

Hi Fluffymittens and welcome.

I'm was on FEC (which I think would be your EC plus one more drug (F)) for 3 cycles and it worked very well for me at shrinking the tumour. It gone from approc 3.3cm to being barely there. I've not had an ultrasound but it is very obvious. The tumour no longer hurts. 

I'm now on a new chemo regime of Taxotore and Herceptin. The plan is to complete 3 cycles of that and then surgery.

The side effects of the drugs have been utterly diabolical for me but funnily enough the Filgrastim injections have been a breeze. Funny old world!