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April 2018 Chemo Starters

Member

Re: April 2018 Chemo Starters

Hi Michelle. I have only had the muscle aches in the days after the herceptin injection followed by the joint aches throughout which means I can't find a comfortable position to sleep in. I did notice on one of the forums that someone talked about taste changes. After surgery for the DIEP i was prescribed a low dose gentel laxative to stop the strain on my tummy. I am still taking them as i am slightly constipated. Not sure which way your toilet troubles are. I agree i am not happy with this going on until April but i have an appointment with the oncologist this afternoon and i will ask what i can do. I am not sure there is a lot they can recommend.

 

I also need the results of the hormone blood test to decide if the ovaries are still working and if i will need zoladex with the letrozole i am due to start shortly. As the Zoladex is a 4 weekly injection and the herceptin 3 weekly it looks is if i may bee spending a lot of friday mornings at the hospital being stuck with a needle. I just want to feel normal and it just seems to be going on for ever. Having a bit of a down week but that may be due to expecting to have to have zoladex. will find out later.

 

On the positive side my daughter just messaged to say she had passed her driving test. The sneaky thing hadn't even told us she had had a test booked. Previously she had one booked and cancelled it as she wasn't ready. I very pleasant surprise but now i will worrying about her driving home down the M1 to see us...

 

Hope everyone else is coping.

xxx    

ktk
Member

Re: April 2018 Chemo Starters

Hi Fiona, they introduce a blue dye that guides the surgeon towards the lymph nodes leading from the sentinel node. It does wear off eventually I am told, but takes several months. Kx
Member

Re: April 2018 Chemo Starters

Hi Gigi and Christine hope you are both well. I was wondering if either of you are having any SE’s from herceptin? I have a funny taste in my mouth and still have toilet troubles! I’m assuming they are caused by herceptin, but fed up that I’ll have to put up with it until May! X
Member

Re: April 2018 Chemo Starters

Hi Sally, congratulations on finishing chemo.
I also just stuck with this board with radio and now A good number of us have so had radio so can offer support and I agree with Dorabel, even the fatigue is nothing like chemo. It still hits but its a light slap rather than being beaten up with chemo.. For me anyway!
Best of luck with the new boob... One thing though, Why will it be blue?? Fiona x
Member

Re: April 2018 Chemo Starters

Thanks for your kind words. I'm looking forward to the blue boob

. Love from mama smurf

 

Member

Re: April 2018 Chemo Starters

Hope all goes well with the surgery, Sal.  I turned to the radiotherapy board when I started that treatment but returned to this board before long.  It’s only my experience but radiotherapy, while it’s no joke, is not as bad as chemo was.  Good luck with your treatment (the blue dye fades eventually).

 

Love Dx

Member

Re: April 2018 Chemo Starters

Hi I guess this should be my last posting here.

I finished chemo on the 10 sept and have my surgery on 10 October.  At the moment I am looking forward to the blue boob, ( named  Mama smurf by my daughter). 

After the surgery come the radiotheropy, so I am not sure which threads to read and post on. Thank you for all the advice I have read, and good wishes to all on this treadmil.

Love Sal

Member

Re: April 2018 Chemo Starters

It’s good to read that post-surgery is generally going ok.  I love the “anything boob shaped” idea; am so grateful my left boob still looks like a boob.  It’s getting sore, though, from the radiotherapy.

 

No more injections + port gone - must be such a relief Gigii.  Not surprised you are tired.  Every aspect of treatment swallows great wads of energy.  I was told I would be very tired after radiotherapy and, for me, this doesn’t mean I want to sleep.  It means I can’t cope with small setbacks because I just don’t have the energy.  I muddle through somehow. 

 

It’s back to the chemo ward on Wednesday for a zoledronic infusion (hoped I’d seen the back of that place for good).  I imagined it would all be over once radiotherapy ended.  Wishful thinking, that.

Member

Re: April 2018 Chemo Starters

It does seem to take it out of us doesn't it. I went back to the gym a few times between chemo and DIEP but didn't do a lot and now i feel like my leg muscles have gone to sleep. Hoping to get back this week even if it is 20 minutes on an exercise bike.

 

I have a wound check on monday and hopefully get rid of the additional dressings on the unhealed bits of the wound and then the oncologist on tuesday to talk about letrozol and anything else. Hoping the blood test shows my ovaries have given up and no zoladex is needed but will wait and see.

 

Must be such a relief gygi to get the port out and stop injecting. I have found the herceptin aches have reduced as i have had more injections so hopefully yours will too. What have they said they are going to do in order to balance you up? Is it liposuction?   I have an appointment in 6 weeks to discuss what is next. Scars don't look too scary and i bought some ordinary non wired bras today to keep me going until i know what my final size will be. I seem to have gone from a D cup to a C cup which is fine as i was told i would be slightly smaller and expected to be nearer a B cup. Anything boob shaped is fine by me.

 

Still not sleeping well but i am getting there. Trying to find a comfy position.

 

all the best to everyone and hope the energy levels improve. Great on you both for running.

 

xxx 

Member

Re: April 2018 Chemo Starters

Hi Gigi
Good to hear from you. I bet your swing is lovely in this weather! Such beautiful days we are having!
It must be a huge relief for you to stop injecting, hopefully physio will help sort out your achey legs. Parkrun is an excellent event I have done a few different ones. It is so inclusive, the marshalls will cheer you round whether you walk or run. I love it as the only person you are competing or challenging is yourself and you get a record of each one you do so you can see your progress. My energy levels are up and down. I think i am my normal self and then tiredness hits! Today I have been for a run and then lunch with friends and now I am shattered. I am so pleased to be back running though, I love it. I tried running after chemo but it was so hard, it has become easier but I have lost my fitness. Also annoyingly an old injury on my hip is playing up, after everything else that’s what hurts!! I’m getting physiology too, I hope they can sort it .
I am very envious of you reading lots. I don’t think I have picked up a book since chemo, I don’t seem to have the concentration at the moment.
I hope you get a holiday sorted, hot or not, you deserve it! X
Member

Re: April 2018 Chemo Starters

Hi everyone sitting in the garden on my garden seat it's lovely out here and #lovelyhusky and my cat neo are sitting with me. I'd love to meet you all, looking forward to that. Stopped injections on Saturday and had my port out Monday. So nice not to have it or to inject anymore. Still very achy legs some days I can hardly walk but trying to push through. Been referred to physio on the 16th October. Had my pre op assessment too on Friday last. The op will even things up so that should happen before Xmas. Went to work today lovely lessons but tired. Off tomorrow so short week all in all. Her cep tin Monday too. How's everyone's energy levels? I'm really going slow but planning to start swimming when my port scar heals. Also registered for park run which is every Saturday they say I can walk round. But not up to it yet. At least work tires me out and I am sleeping better. Looking forward to regaining energy now off the blood thinners and moving so far away from chemo. Reading loads at the moment on my 4th book this month so my concentration levels are improving. We want to go away but it's not hot anywhere anymore unless we go way far and that's a bit expensive but looking into it. Have a list of places I want to head to. Well big hugs to everyone have a lovely weekend Gigi x
Member

Re: April 2018 Chemo Starters

Hi ladies

 

So glad to read your posts after a quiet patch on the board.  Thanks for all the good wishes regarding my radiotherapy.  Last zapping tomorrow  - can’t believe I’m coming out on the other side of treatment.  Radio has been much easier to bear than chemo.  Still got neuropathy & hideous nails but convince myself the pain is fading.  Very tired, though. 

 

Re. survival rates, I tell myself that the tables for this are a model not an exact account for the individual.  Each small percentage adds a bit more hope.  It’s enough for now just to have got through the months of horrible treatment.

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Re: April 2018 Chemo Starters

Yes Christine we still have to plan ahead and believe the future is rosey otherwise life becomes a bit of a drudge.
I’ve been told the same Fiona about the tiredness kicking in after rads, I’m still not sure if I’m having 3 or 4 weeks so that and Christmas could affect when we meet up. Glad you are both keen we will have to work out where everyone is, I’m in Cardiff but willing to travel and yes Christine it will be fun to see if we look as we have imagined! X
Member

Re: April 2018 Chemo Starters

Thanks Michelle... I'm looking forward to stopping the daily trek but I'm told that the side effects will peak in 10 days after the last radio and then subside again so 3oct for me will be when this all reall start to end!

Meeting would be lovely, count me in

Have a good day, all x
Member

Re: April 2018 Chemo Starters

Completely agree Michelle that as a person you can be that one even if it shows a 99% survival and i wasn't even looking to know the total percentage. Actually i wish i hadn't seen the overall figure. I was just wanted to know what the benefit was from the added drugs i was being offered as i needed to get my head around the extension of the treatment and side effects. In my case it proved a point but i am not sure as a matter of practice i would have wanted to have know the total figure. I have to believe i will survive 10 years and will continue to believe that unless i am told otherwise. I will still plan for retirement and keep myself fit. Reality is we don't know what will happen to us in the future.

 

Hope you have a bit more energy now.

 

I think it would be fun to meet up. I wonder if we will look like we imagine each other to look?

xxx  

Member

Re: April 2018 Chemo Starters

Thanks for the info Christine. I spend too much time thinking about survival rates. It’s great if you’re in the 80 or 90% but I guess if you are that one who it doesn’t work for them stats are no help!
Hope the final week of rads goes well for you both Dorabel and Fiona.
My rads will finish at the beginning of November. If anyone is keen perhaps we could arrange to meet up at the end of November? X
Member

Re: April 2018 Chemo Starters

Hi everyone

I am sure that will be a relief to get the port out. I felt so much better to have mine gone and even better news that you will be able to stop the blood thinners. I only had two weeks of that and my legs were covered in bruises so i have a small idea of what you went through.

 

The website for the 10 years survival i think was a one available to doctors only and i didn't see the name of it. she did say it was nhs i was surprised at the figures she gave me after entering my specific details. the majority of the survivial in my case was the surgery which amounted to over 60% and then a further 10% for chemo and 10% for letrozole. My tumour was alos very eostrogen positive but i have no figures. There was a few other things too and it took into account death through other unrelated issues. I would think most oncologists could give you figures that relate to you.

 

I had problems with the first injected herceptin but the following ones seem to have been less so. I do have aches in joints and muscles for the first 48 hours post injestion but these eased off. I still have neuropathy on my feet which also gets worse a few days after each injection then lessens until the next one.

 

Would love to get away at some point but i am not allowed to fly for a few months post surgery and not really up to it yet. would like to plan something at some point though to forget about this summer.

 

All the best for your last week of radiotherapy Fiona and Dorabel. We all just need to listen to out bodies at not push things too far too soon.

 

xxx

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Re: April 2018 Chemo Starters

Forgot to say Congrats on the port coming out soon Gygi!! 🎉🎉
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Re: April 2018 Chemo Starters

Thanks Gygi, I know what you mean however in my case I don’t think anything has been reassessed. It has been decided on due to my original oestrogen score or 5/8. I will give Tamoxifen a go. The nurse has said to see how it goes for 6weeks so that is what I’m going to do.
Sorry to hear you have been suffering Fiona. I still have numb toes from chemo, hopefully it will fade eventually. Is the arthritis thought to be caused by chemo or an existing complaint made worse? Sounds painful, I hope the new consultant can help.
I am just returning from a short break in San Sebastián. It has been absolutely wonderful to get away from everything. It’s just a shame I have to go back to rads planning and a heart scan! Also both daughters go off to uni this weekend so the house is going to be very quiet. 😢 x
Member

Re: April 2018 Chemo Starters

Hey ladies.... It is really lovely to read everyone moving on and getting on well after chemo. Michelle, amazing result for you, I'm so delighted for you.
I had a really strange experience of being absolutely floored for 4 weeks after I finished chemo early because of the neuropathy. My body just seemed to explode with strange and unusual side effects but I'm pleased that they have, for the most part, started to fade. I have been left with neuropathy on my hand and feet and now, what my oncologist seems to think is the symptoms of rheumatoid arthritis in my hands feet and knees but I'm being referred to a new consultant for review.
I'm on week 3, the final week of radio, and, touch wood, it's been very uneventful.. Even the fatigue just feels like tiredness after the chemo! Ive been given double base gel/cream to use and for me it's been excellent. I apply 3 times a day, in the morning before radio, and then in then in the afternoon and before bed... So far so good!
Next stop for me is starting tamoxifen and possibly zoladex but I'm resisting those monthly injections as I think it's too much but will see.. The oncologist says there's room for discussion!

Sending lots of good thoughts to all.. I'm with the rest of you.. I didn't want to join a new group.. I like this one! Xx