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April 2018 Chemo Starters

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Re: April 2018 Chemo Starters

Hi everyone just heading home from the hospital. They decided not to give me the injection today as they want to check my heart first. So happy! First holiday all year without treatment so no side effects! Will have checks and resume after that I guess (mid jan) looking forward to my hols now. Merry Xmas xxxx
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Re: April 2018 Chemo Starters

I’ll keep my fingers crossed for you Gygi x
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Re: April 2018 Chemo Starters

Hi Michelle went back to A &E at another hospital after a weekend of palpitations and they did more tests. Apparently I'm the healthiest sick person around! My blood tests were so spot on. It seems a side effect of the herceptin. Starts day 2 and lasted 12 days for me. Next herceptin is Xmas eve so will see if it happens again and seeing the nurse on the 9th so will ask for my next echo. I'm hoping it started because I was super tired from work and that this time I don't react so badly. Will let you know x
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Re: April 2018 Chemo Starters

Just seen your comment Gygi, how are you feeling? Apart from tired that is! I’m really feeling the tiredness too, maybe from rads. I hope your heart scare is sorted. X
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Re: April 2018 Chemo Starters

Dorabel I’m so happy for you! Although this is the place to rant when need be it’s lovely to hear good news too, it must have been such a lovely relief. It’s horrible how negative snippets of conversations can sometimes play on your mind.
Anyway a lovely Christmas present for you Dorabel! X
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Re: April 2018 Chemo Starters

Oh Dorabel that is fantastic! Sounds like you can relax and enjoy the festivities now. I finished work today. So tired. Will write more tomorrow when I'm a bit rested. Xxx
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Re: April 2018 Chemo Starters

At last, I have something positive to post about instead of ranting!  I had an end of treatment session today and it was wonderful.  The kind nurse running it turned out to be my newly-assigned breast-care nurse.  I was given the time to voice my fears and worries and left with a clear account of the follow up I will have.  My biggest fear - that I was having zoledronic acid to delay inevitable bone cancer - turned out to be wrong and based on something a doctor had said which I had probably misinterpreted.

 

When I finished my treatment without any plan about what came next, my imagination went into overdrive.  I built disaster scenarios out of scraps of conversation during hospital treatment sessions.  I thought the situation was: you’ve had your treatment, now go away and stop bothering us.

 

The relief is indescribable.  I wanted to cry and do a little dance at the same time.

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Re: April 2018 Chemo Starters

Thank you both for those kind words. Had a bit of a downer on myself last night and thought maybe i had come across as me me me when others are going through worse.

 

I did look at what a MUGA scan was and it did sound a bit scary with the radiation and the longer time it takes. I assume it is a hospital preference as to which one they use. It is just nice to know what is the normal and what to expect. I didn't know what a large percentage of women on herceptin have heart problems. One report said 50%. This does cover everything from just a minor drop in function though. I am just hoping that it keeps on schedule so i can free of that injection by the end of march so will only have the zoladex to schedule each month. It still ties me to dates i can't go away on holiday as they shouldn't be moved more than a day or two where as I think herceptin can be delayed by a week.

 

The phone call today was just to access what my needs were. The lady was very nice and has requested i see a counsellor face to face in about months time. I think i just need a way of dealing with stress of each hospital appointment as I have had so many surprise revelation in my last hospital visits, it is making me very emotional. She seems to think someone can help with coping mechanisms.

 

Need to get through my birthday (christmas eve) and christmas with family so hoping that will not be too stressful. My daughter is due home for a few day which i am looking forward to.   

 

Thanks again

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Re: April 2018 Chemo Starters

Sorry my keyboard went funny at the end of the message and wouldn’t let me type!
I also meant to say my counselling was face to face Christine and I can understand why you might find it awkward over the phone I think I would feel the same. Can you arrange face to face?
Anyway that’s all from me, hope you are feeling better xx
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Re: April 2018 Chemo Starters

Hi Christine, I second what Dorabel says, not self absorbed at all and if you can’t say it here then where?
I have had one to one counselling too, only one session so far but it has helped, although I can see it does make a big difference who you have. I have a trainee and supervisor in mine and have to say the supervisor’s experience shines through. I wish she was more involved.
I asked a Dr friend of mine about echo and muga scans. The echo is less intrusive and they do provide similar results. Apparently 55 is and average score and they are often much lower.
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Re: April 2018 Chemo Starters

Hi Christine

 

Sorry it’s been such a miserable week.  Not self-absorbed and not going on - this is where it’s ok to voice things when those who haven’t gone through this particular mill might not understand.

 

I had face-to-face counselling and found it really helpful.  My most pressing problem was that someone I know socially is part of the counselling team.  I don’t much like this person and had to make sure that absolutely nothing from my sessions ever got to her.  Once that was sorted, the counselling was quite demanding but it helped me a lot.  I found myself opening up about things I’ve never told anyone.  Four sessions were enough for me because I didn’t want to go any deeper.

 

Hope that helps.  Trusting another person with private stuff feels very risky and only you can know if it’s worth the risk.  Everything depends on who you get.

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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.

 

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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.

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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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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.
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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
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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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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.  

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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  

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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