April 2018 Chemo Starters

Hope everyone is having an ok week. Glad your on the mend Michelle. That must have been horrid on top of everything else. it is like what next? I am waiting for a week where i don’t have a hospital appointment or doctors appointment. One day it will happen i am sure.

 

Fiona, if you find anything that works for the joint pain then please let me know. Mine seems worse on the injected herceptin than it was on the infusion so my oncologist suggested leaving the port in and going back to that but i really want it out so that is not an option. I am just using paracetamol and ibuprofen but at night i can’t get comfortable at all.

 

I have had doctors and consultants disagreeing on whether i need my Mirena coil removed so decided i might as well have it removed. I went to my gp who had previously advised it was a good idea to be told the usaul practice was to leave it in until 55 so i had 6 months to go. I explained things so she agreed to remove it. The oncologist had said it should be removed but the breast surgeon said it didn’t need to be then one gp said yes and another no. Anyway it is gone now but i wish they all agreed.

 

Hope you are improving Gigi and getting some normality back.  

Hi Christine, this evening I was prescribed tramadol, 50mg tablets, to see if that helps. I was a bit worried about taking it but my gp has assured me that it’s a low dose but will hopefully be enough to cut through the pain without the weeping side effects… I’ll keep you posted

Also it’s.interesting what you sat about the mirena coil Christine. I also have one that was fitted last year to stop unmanageable heavy periods. My oncologist said she’d usually recommend that it was removed for ER+ but as it was so recently fitted it won’t have contributed to the cancer but that she’d be happier if it was removed. It’s my choice and I think I will remove it but I couldn’t cope with the heavy periods again but maybe the tamoxifen will see to that? Another thing to think about that I could do without! Xx

Good to hear all is going ok for you Fiona, well as ok as chemo gets I suppose! I hadn’t realised your chemo finished at the end of August, it must be more than a little annoying hearing of others finishing! Planning a holiday sounds good, I have spent the last 4 months planning holidays although not Booked anything yet! Two places recently recommended to us are Lucca and Jersey. I haven’t been to either but both sound beautiful.
I’ve also got 3 weeks of rads probably starting begining of October so all being well I should finish treatment (aside from herceptin) by the begining of November. Here’s to a great Christmas!
I hope the tramadol sorts out the joint pain without the weepy side effects. I’ve been fortunate not to have joint pain so far so concerned to hear it is worse with the herceptin injection Christine. I guess I will just cross that bridge if I come to it.
Lovely news of your friends awaited baby, new life really is uplifting x

Good morning. Feels like a nice cool start to the day with all the windows open so will go for a bit of a walk before it gets unbearable.

 

I think we all react differently Michelle so no need to worry yet as some people don’t seem to have any side effects after chemo. When having chemo it is difficult to tell what effects relate to each drug anyway and i am hoping that my body will react less as time goes on.

 

I felt i needed to get rid of the coil at a point i was feeling ok and had not considered doing it while still undergoing chemo. Mine had been in place for about 8 years and was inserted for mid cycle bleeding but it would have had very little hormone in it by now. i was also positive for estrogen and progesterone so for peace of mind i had it removed before the DIEP but i don’t think there was any urgency.

 

All the best 

Anyone had chemo delayed due to low neutrophils? Mine were 0.88 yesterday and need to be 1.going in early today for a blood test to see if ok.been resting and off work before appointment at 1 to rest. Always bounced back on FEC but on Docataxel now.x

Mine were borderline a few weeks ago. On the recommendation of the nurse I ate loads of spinach and kale and drank homemade green smoothies and they went back up again over a few days. It may or may not have been because of all the greens but I figured it wouldn’t do me any harm. Hope you get back on track Linda x

Jersey has been recommended to us too, it looks like it might be the new place to be! As for Lucca, I haven’t heard of there at all… I’ll check it out, thanks.

It feels like a never ending conveyor belt taking us from one treatment to another… Roll on Christmas ?!

Yep had fruit juice yesterday with greens in it as read vitamin c helps.just hope its ok today as dont want it delayed as only got 42 days left or less if have 2 more cycles.also got an ultrasound on 6th which may be affected.ta.

Hi Linda I haven’t had low bloods but do know that exercise is proven to improve the immune system, it even reduces the risk of infection after surgery. I know for various reasons not everyone is able to do to much exercise during chemo but if you can it might be worth trying to increase your exercise on the next cycle. Good luck for today x

Early on in treatment someone referred to the conveyor belt of treatment as the Breast Cancer Triathlon! If that’s the case i’m just doing my last few laps of the pool, I’m not a fan of swimming!! X

Hi everyone how is everyone feeling? With this heat I’m sure it must be quite hard. I’m just over the effects of “half” chemo two weeks ago. Been so tired and nauseous but feeling better now.
Summer hols have started for me and we bought a new car Monday. So I added my daughter to my insurance (my old car) and we are helping her get used to driving.
This weekend I have French friends coming over and a beer festival to go to with them (and they are riding in the prudential) but I’m not drinking. I’m sure my liver has enough to handle getting rid of the chemo toxins.
Accidentally announced on Facebook I’d finished chemo so it’s out there now and met up with a couple of old friends at home this week which was lovely.
Going to meet women from one of my Facebook cancer groups this morning which I’m looking forward to and then herceptin on Monday. My doc offered to take out the port or I can use it for herceptin. Debating at the moment. If I keep it in I need to continue with the blood thinner injections. But I have to continue with them anyway for 3 months after chemo so he also suggested taking it out at the same time as my new surgery (adjusting booby size and getting a nipple) After my visitors leave I am going to start new fitness regime to get ready for surgery and life in general lol. One of my friends who came over is vegan and she loved what I cooked for her So I’m trying to cook more meatless dinners. My partner had already suggested it so everyone is onboard. And going to try to reduce my plastic usage. Already upped the milk from my milkman so no more plastic bottles of milk. Little by little.
I suggested Jersey to my partner as a holiday last year so looks like we are all going to bump into each other there. I would also like to go Isle of White and Mallorca again but atm I’m not ready for travel.
Low energy levels mean I am really just chilling at home. This heat is not for me. My bc nurse said I could go swimming but as I spent so much time cold capping I won’t go yet as the chlorine might not be good for my hair. With a hair band you can’t see any of the (bits of) bald patches and I’m investigating how to encourage my hair to grow. I still have my eyebrows and lashes but know they could still go. Hair is already growing on my legs!!!,
Hope you all have a good weekend. Will be more personable next time but been finding it hard to concentrate these last couple of weeks. Take care and hugs Gigix

Hi

Feeling very emotional today. the week started well but i have developed a number of problems this week. First i have numbness in my toes which the helpline says i have to keep an eye on. Emailed the oncologist but just got an automated not working at the moment message by return. Secondly i have some weird patches of scabbed spots on my breast that seem to be spreading. Concerned about that as the mastectomy/reconstuction is getting closer. Emailed the breast cancer nurse but haven’t had a reply. Now i have pain in my port.  i went into the chemo unit after phoning them about it and they think there may be a clot in in it so i have to go back this afternoon for an ultrasound. Hoping that a doctor may be able to look at the skin problems too as i had booked a gp appointment but then had to cancel as the appointment clashed with the ultrasound.

 

Just when i let myself think i could relax for a week it all gets messed up.  

Hi

Feeling very emotional today. the week started well but i have developed a number of problems this week. First i have numbness in my toes which the helpline says i have to keep an eye on. Emailed the oncologist but just got an automated not working at the moment message by return. Secondly i have some weird patches of scabbed spots on my breast that seem to be spreading. Concerned about that as the mastectomy/reconstruction is getting closer. Emailed the breast cancer nurse but haven’t had a reply. Now i have pain in my port.  i went into the chemo unit after phoning them about it and they think there may be a clot in in it so i have to go back this afternoon for an ultrasound. Hoping that a doctor may be able to look at the skin problems too as i had booked a gp appointment but then had to cancel as the appointment clashed with the ultrasound.

 

Just when i let myself think i could relax for a week it all gets messed up.  

Oh Christine I’m so sorry to hear of the problems you are having, you have had more rhan your fair share and it’s certainly not helped by getting through to voicemail! Could you contact your oncologist’s secretary? Mine was helpful the time I had to contact her. If your oncologist is away hopefully there is another who could help and the secretary should know who.
I hope all goes well with the port and ultrasound this afternoon. I think you should insist someone looks at the spots, but I know this is easy for me to say. Will you take someone with you to the appointment? Sometimes a bit of support really helps.
The emotional rollercoaster does seem never ending. Things are never simple and once one thing is sorted it seems something else arises. But you have already come so far, with surgery and chemo I hope things will start to get on a more even keel for you soon. Sending you love and support xx

That’s great news Linda, so presumably your chemo went ahead as planned. I think it is walking that has got me through chemo, in part because it makes me feel like I have a teensy bit of control. I’m looking forward to taking up running again in a week or two. I hope the rest of you chemo goes to plan x

Thank you for your kind words and support. I had the scan which showed no sign of a clot thank goodness but and the doctor on the chemo ward said she didn’t know why it was hurting but there was no clot and as it wasn’t red it was not infected. That was a relief at least but it is still a bit uncomfortable. I think i must have just moved my neck wrongly as it did seem to come on suddenly. She also had a note on the system about my foot problems but couldn’t explain that either as she said it wouldn’t relate to the herceptin and only ocurrs with the chemo, which i finished a few weeks ago and i had sensitive feet then and not numb ones. I just need to keep an eye on it all. I did show her the scabs/spots and she wasn’t concerned and thought it was heat related. Most of it she just told me to phone the helpline it anything got worse but it was re assuring.

 

Yes we have had some rain but still feels hot. i tried looking for the orange moon but the clouds are in the worng direction so i can’t see any signs.

 

I agree that exercise gives me some time that is mine. I have always used my gym time as a zone out time even when my daughter was little. It gives me time to recharge. I am still not back to normal but i am doing a little at a time.

 

Thanks again and hope you enjoy your weekend.

 

Christine I am so pleased you feel reassured by your meeting with the consultant, we have enough uncertainty to deal with in our lives.
Glad to hear you are feeling more like yourself Gygi. It sounds like you have a fun weekend planned with friends, always good to have a distraction from what we are going through. We don’t eat meat with every meal, it started years ago when my daughter turned veggie. Although she is back eating meat she is very fussy so I always cook a few veggie meals in the week, lentil lasagne is a family favourite. Has anyone had any odd food cravings during chemo? I could count on one hand the number of Mac Donald’s I’ve had in 10 years but during chemo I’ve had 3!!! What is that about?! The girls think it’s funny as I’ve always avoided it and told them not to eat it!
Re hair Gygi I also stuck with the cold cap, I have hair all over my head although it is thinner and I have a balding patch on top which I cover with headbands and scarves. My hair has started growing back now, about a cm of growth which I am soooo excited about, I’m even planning a haircut in 5 weeks! My lashes are still holding on but my brows are sketchy and most annoyingly I’ve had to shave my legs a couple of times! There really is no justice! I’m not sure about my nails as they have been covered in nail varnish for weeks, does anyone know when it is safe to take the varnish off?
I was walking with a friend this week and talking about finishing chemo. I haven’t really had a big moment of relief that I thought I might experience, I suppose because I feel as though I am still ‘going through it’ however it made me think about how I will feel on week 4. I haven’t had a week 4 for 18 weeks, so I am excited about that and suppose then I will feel like I am moving along. When is your next op Gygi? Did you have the recon at the time of your mx? Do you mind me asking why does the size need adjusting?
Christine I’ve always loved running as my thinking time, I never wear ear plugs I just like to run and take in what is going on around me and think about things. I can’t wait to get back to running, but have enjoyed walking everyday during chemo because it has been with friends. Dorabel, you can’t beat a good chat to make you feel better and a little bit normal again can you?
Well it has been blowing a gale here all night and the forecast is wet and windy for the weekend so that combined with being my ‘risky’ week I’m not what our weekend plans are.
Have a good weekend all xx

I was wondering if anyone could give me a reality check about docetaxel side effects.  The crushing fatigue is actually getting worse.  It will be 2 weeks since chemo on Monday & I can barely crawl out of bed.  I did the ironing this morning and slept for hours afterwards.

 

Is this what others have experienced?

Hi Dorabel sorry to hear that. I know Docetaxel is a nightmare for some. I couldn’t handle it but that was due to the filgastim injections which sent my blood pressure through the roof. Maybe a good idea to ring up and check there is nothing they can do to help you? From the comments I’ve heard sounds about right unfortunately. Sorry I can’t help more. Hope you have support at home and you can just chill at home. Xxx

Hi Dorabel, I’ve haad 4 cycles of Docetaxol and i have to be honest it hasn’t been my experience. Generally for me I spend days 4 & 5 in bed, even then I’ve been for a walk beforehand, but that is to do with the injection than the chemo as it was the same on FEC. I haven’t really had to nap much in the the days otherwise. Having said that like Gigi said I have heard the fatigue is this bad for others. I guess I’ve just been lucky. I really hope it improves for you but if not at least you only have one more cycle xx

Hi everyone at Guy’s this morning for my herceptin. No chemo no cold cap hopefully everything will run smoothly today. Hope Monday has started well for you all x