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Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Hi everyone.

Feels like the end of a rubbish week but i am determined to make next week more positive. Sorry if I have gone on about the echo result and may be been a bit self absorbed. 

 

I am due a phone call from the counselling department at the hospital tomorrow but not really sure it is the thing for me. To start with i am not good on the phone at expressing myself. How did it go for you Dorabel? I just don't feel confident talking to someone that is a professional. I had one session at a breast cancer charity but didn't feel i really got anything from it.

 

Michelle. Hope all is good with your skin and everything else. 

 

Gygi. Hope everything has been checked and sorted.

 

Fiona. Hope you are well too

 

Everyone. Have a great Christmas and hope the new year brings new healthy women.

 

Member
Posts: 127
Registered: ‎16-01-2018

Re: April 2018 Chemo Starters

Thanks for your post, Michelle.  Now that treatment has ended, I vary between feeling euphoric that it’s over and terrified of recurrence.  Yes, I feel emotional too.  It feels as though I’ve crossed some divide and there is no way back.  I’m glad you were able to get counselling.  I had 4 sessions which eased me through a dreadful period of meltdowns that happened because I couldn’t cope.

 

I hope you have a lovely Christmas away.  Hope, too, that for all of us 2019 is an improvement on the year we’ve just endured.

Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Tried to post this morning but got an error message from the site so will try again later. Heart problems are very common on herceptin ftom research i did. Some is on links in the forums here.
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Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Just had to google MUGA scan as i have never heard of it. It seems to test the same thing as my Echo. Mine they were concerned by the drop and not the actual figures. I had a very good start point so my figure now was still about 65 i think.
Member
Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

So sorry to hear you have been having a hard time Christine. It seems Dorabel is right and they are not joining the dots. That must be very frustrating and worrying for you. I hope you get the answers you need and soon.
How do you feel about your end of treatment Dorabel? Have you been emotional at all? I found I have been very emotional after radiotherapy. I’ve had some counselling and that seems to be helping.
How are you doing Gygi? Have they checked your heart yet? When was your last MUGA scan and had your score reduced? Mine started at 65 but was down to 55 last time. I’m sure I’ve read if it goes under 50 they stop the herceptin and give medication until back to normal and then restart the Herceptin.
Fiona how are you doing? Are you managing to move on from all of this?
Everything is ok with me as I said I’ve had counselling and have more booked in because I have been very emotional since finishing rads but actually feel so much better now. This weekend both my girls are back from uni and we are a family again and I can’t wait. We are going away for Christmas as I couldn’t face the usual routine so I am looking forward to that too.
Well I hope you all have a wonderful Christmas and we can welcome in 2019, hopefully a healthier year for us all xx
Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Hi Dorabel.
I have taken Letrozole for 6 days and the only side effect i am aware of so far is no appetite. Really odd as i have never had that before. Eating because it is a meal time and not because i am hungry. On evenings i eat alone i am making little effort. Time will tell if any other side effects arise. Aches have not changed much from those i already had so fingers crossed on those.

Best wishes.
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Posts: 127
Registered: ‎16-01-2018

Re: April 2018 Chemo Starters

Hi Christine

 

I hope things have got a bit better since yesterday.  The confusion and fear must have been awful.  It sounds as though the details of your treatment are just not being joined up by the medics involved.

 

How is the letrozole going?  I was supposed to have this but the oncologist decided on exemestane instead - same sort of drug.  So far, the effects have not been bad at all, so I hope you have the same experience with letrozole.

 

I’ve got an end-of-treatment appointment next week with the breast care nurse team - but still no assigned nurse.  

Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Good morning everyone.

 

Just had another herceptin injection which was a bit of a chaotic experience and now wondering if I should see how easy it would be to change oncologists.  When i arrived they were busy and i didn't mind waiting but then they said they couldn't do it without an echo result. I said i had one recently and told them the date and they sent someone to cardiology to get the result as they didn't have it. I thought this odd as i had seen the oncologist after the echo and I think she said she would chase the result. At least i assumed she would review it. Anyway then there were phone calls and discussion on whether they could give me herceptin as the result was a drop from by previous one. They knew i could hear them talking so I started to panic a bit. I knew all the meds affect the heart as does my luekameia medication. when they saw i was upset they got a doctor to come and explain things to me and that settled me. It was ok to do the herceptin and it is a known side effect apparently that as treatment goes on the heart can be affected and other medication may be needed in the future. When i asked why my oncologist hadn't told me she couldn't answer saying as i was a private patient the oncologist deals with it all on her own.   May be i would have been better with a team under the nhs. The nurses are so good i can't fault them but this is not the first time results haven't been checked and others have pointed out the problem.

 

Yesterday i went to an appointment to check on the scar healing on my tummy as i was concerned about some little lumps. She confirmed they were just stitches dissolving and not to worry but she found a hard area that she wants an ultra sound done on. she said it is probably to do with the fat dying where capillaries haven't joined and not to worry but I can't help it. The ultra sound is not an urgent one but hopefully it wont be too long.

 

Getting home today i found an envelope on the mat which had two booklets it and a note from the breast cancer nurse who didn't phone to say "as promised". Completely confused. I phoned the number on the slip and left a message saying had i been confused with another patient. Will wait and see if i get a call back this time. Not holding my breath. 

 

Sorry for the rant. Needed to get that out there and clear my head before going to do some Christmas shopping. Started Letrozole and waiting to see what side effects arise from that too.

 

All the best to you all  

Member
Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Thanks guys, resting but still feeling so rotten. My heart rate is lower but palpitations going strong. Feeling very spaced out so can't do anything. Just glad don't have to have those blood thinner injections again so grateful for that. Will let you know xxx
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Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Well that must be a relief that there is no clot Gigi. Have a good rest this weekend and I hope you don’t have to wait for the heart test xx
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Posts: 127
Registered: ‎16-01-2018

Re: April 2018 Chemo Starters

Oh Gigi, this must have been terrifying.  Thank goodness there’s no clot.  I hope you are having a good rest this weekend with lots of tlc.  

Member
Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Thanks guys after 3 days 16 hours in total no blood clot thank goodness. Back to oncology and have asked them to check my heart. Will rest up the weekend. Hope you all have a good one take care Gigi
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Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Oh dear Gigi that sounds horrible and a bit of a worry. Thinking of you and hope all goes well . Puts all my minor aches and pains in perspective.

All the best
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Posts: 591
Registered: ‎30-03-2018

Re: April 2018 Chemo Starters

Oh Gigii you poor thing. Have you had regularl heart scans? I think the herceptin can cause problems such as breathlessness and palpitations. Good luck today, thinking of you x
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Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Hi guys thought I'd share with you as a little but worried. Been feeling so tired and started getting palpitations and breathless rang AOS on Wed after work and they advised me to go to A&E in case I has a blood clot on the lung. Not a massive one just a little one that needed to be sorted out ASAP. Went and got home at 1am this morning and had to go back all day today. Symptoms got worse but improving now. It might be the blood thinners they gave me. Horrible day but managed it and appointment for CT scan tomorrow. Bit worried so been up clearing up a bit and my cleaner comes tomorrow so at least at the end of the day the house will be tidy. Wish me luck. Will let you know how it goes x
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Posts: 127
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Re: April 2018 Chemo Starters

Thanks for this, Christine.  I’m not saying it’s reassuring that you went through the same thing - horrible for both of us.  Does make me feel less of a grumpy person, though.  Letter confirming surgeon’s 6-month check (at 10 months) arrived today.  

 

What was reassuring was to know that joint pain seems to be a side effect of what we’ve been through and that gives me hope that this is a side effect which will go.  I feel as though I should have a sign saying ”Sorry, I’m a bit slow” stuck to the back of my head when I am going up or down stairs, one at a time like a toddler.  

 

Herceptin side effects do not sound good.  A friend recommended sachets of root ginger & turmeric for making a hot drink.  It’s supposed to help reduce inflammation but even if it doesn’t, it tastes nice.

Member
Posts: 149
Registered: ‎19-04-2018

Re: April 2018 Chemo Starters

Hi Dorabel. I know exactly what you mean. I have had to chase everything. Last week i had an apoointment with  my oncologist and was introdueced to the breast cancer nurse. I have not had one for the whole of my treatment and have relied on the macmillan helpline. She said she would ring on monday for a chat about my treatment but here we are on wednesday and still no call. I do still have contact with the surgeon and his team but he seems to be on his third PA this year and I am not getting answers to questions there either.

 

Gigi. Sounds like you are having a tough time. I am trying supplements for the Herceptin pains and was told turmeric is good. Haven't tried it yet. I find my leg muscles are very reluctant to work. Bending down or doing a stretch after a work out are nearly impossible and I feel like an old lady. I have had 12 of the 18 treatments, inculding the 4 during chemo, but it still seems a long way to go to the end of March. Should start the Letrozole next week as log as i don't have another period. New set of side effects i am sure.

 

Energy levels are still not brilliant but i guess i have the luxury of working around that. People think once the main treatment has finished that all goes back to normal. I am still a long way away from that. Hope the next two weeks aren't too exhausting and xmas will give you are rest.

 

xxx 

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Posts: 127
Registered: ‎16-01-2018

Re: April 2018 Chemo Starters

Hi Gigi, good to hear how things are going for you.  It sounds as though you are recovering, despite the exhaustion.

 

I’ve just discovered how a person can slip through the cracks of the system.  Treatment ended a couple of months ago and then - nothing.  I finally rang the breast care nurse line yesterday and explained that I didn’t have an assigned nurse but was worried that I had been abandoned (do I have to get stage 4 bone cancer before anyone checks?).  As if by miracle, an appointment with the surgeon was arranged for this month.  I was booked into an end-of-treatment clinic (who knew such a thing existed? no one told me).  I was assured I would get an appointment for my yearly mammogram.  What a lot of target boxes finally got ticked!

 

What concerns me is that I doubt I’m the only person to whom this has happened.  Because I had no assigned nurse, it was no one’s job to look at my file.  If I had the early stages of dementia or didn’t want to make a fuss, zilch would have changed.

 

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Posts: 174
Registered: ‎03-04-2018

Re: April 2018 Chemo Starters

Hi everyone, how's things? Been too busy and too tired to write but have been following the thread. Hope your skin has improved Michelle. Yesterday had Herceptin number 9 so that means halfway! Went to bed super early. Today feeling a lot better and it is my day off! Still need to get to that swimming pool, nice you have been Euby. Got my prescription goggles now just need to get a swimming hat and some energy and I'm there! Looking forward to being off over Xmas. Will be able to go then. I am walking the dog more but often with a limp. Just keep on going Gigi I tell myself you will get there! Pushing through. I don't think they realise at work how hard I'm finding it. Two parents' evenings and an inspection have wiped me out but I've made it! Only 10 more working days till the hols! Also this morning is the first my hair is not sticking up in a weird cartoon like pose. I think the top where the bald parts were has grown enough now. Nearly gave up the other day and chopped it all off but perservering and lots of scarf wearing seems to be paying off. It is growing as it's time to dye it again. Take care everyone Gigi
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Posts: 149
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Re: April 2018 Chemo Starters

Hi Euby. Yes i was diagnosed at 54 and was having hot flushes. Chemo stopped the periods and i thought that would be it but they still started again. Bodies are weird things and very unpredictable. I now have to have zoladex injections in the hope they will shut of my ovaries so i can take letrozole.

Hope you are feeling a bit more comfortable Michelle.