Next phase ... Chemo on Monday
viking1
Member Posts: 288 ✭
Hi,
After the lumpectomy and sentinel node biopsy op, then next op of total axillary clearance of my right arm, I am now up to chemo. It starts on Monday. I am HER2 positive, grade 3, so will be having 17 injections into tummy over the course of treatment, taking full treatment time to 51 weeks ... ergh. Did you know that 3 injections cost around $6500.00 each? I pay nothing as a public patient but that is amazing ... thank goodness I am not in the USA with no health insurance! We are lucky!
The chemo oncologist yesterday said I was cancer free. The chemo, radiation and injections are done in a 'curative window' and for prevention of a recurrence. What did surprise me is she said that if I got a recurrence, it wasn't curable. It was treatable. I didn't like hearing that.
The first oncologist recommended a longer 6 month chemo treatment as less harsh. However, her superior decided on the 6 cycles three weeks apart, so 18 weeks. She said she thinks as I suffer depression and anxiety I might not last the distance or the chemo may upset my mood and make me a bit manic. She was pretty dismissive of side effects except hair loss! I was particularly worried about diarrhoea as have IBS and little warning. She said constipation was more of an issue.
I miss my breast nurse and surgeon ... the environment in the new building of the hospital is different and new, and I don't feel as 'safe'. I suppose I will get used to it as I will be there long enough. The junior oncologist was nice. I'm sure the senior is nice but not very warm and fuzzy.
I seem to be at appointments nearly all day in some cases and when I get home am awake till 1am ... I think it is adrenalin. On Monday I have to be ready for hospital transport at 8.30am, then have a radiation oncologist appointment at 10.30am, a breast physio appointment at 1.30pm and first chemo at 2.30pm. I can sit in the Solaris Centre after the radiation oncologist and have a treatment if I like. I will have to get an uber home as transport cut off is 3.30pm. Wondering if I should try rescheduling all appointments except the chemo or just get it over with? Tired just thinking about it! Plus an education session today - 2 hours in driving all up and 90mins there. Guess everyone is overwhelmed. Sore throat, rain and tiredness not helping.☹
After the lumpectomy and sentinel node biopsy op, then next op of total axillary clearance of my right arm, I am now up to chemo. It starts on Monday. I am HER2 positive, grade 3, so will be having 17 injections into tummy over the course of treatment, taking full treatment time to 51 weeks ... ergh. Did you know that 3 injections cost around $6500.00 each? I pay nothing as a public patient but that is amazing ... thank goodness I am not in the USA with no health insurance! We are lucky!
The chemo oncologist yesterday said I was cancer free. The chemo, radiation and injections are done in a 'curative window' and for prevention of a recurrence. What did surprise me is she said that if I got a recurrence, it wasn't curable. It was treatable. I didn't like hearing that.
The first oncologist recommended a longer 6 month chemo treatment as less harsh. However, her superior decided on the 6 cycles three weeks apart, so 18 weeks. She said she thinks as I suffer depression and anxiety I might not last the distance or the chemo may upset my mood and make me a bit manic. She was pretty dismissive of side effects except hair loss! I was particularly worried about diarrhoea as have IBS and little warning. She said constipation was more of an issue.
I miss my breast nurse and surgeon ... the environment in the new building of the hospital is different and new, and I don't feel as 'safe'. I suppose I will get used to it as I will be there long enough. The junior oncologist was nice. I'm sure the senior is nice but not very warm and fuzzy.
I seem to be at appointments nearly all day in some cases and when I get home am awake till 1am ... I think it is adrenalin. On Monday I have to be ready for hospital transport at 8.30am, then have a radiation oncologist appointment at 10.30am, a breast physio appointment at 1.30pm and first chemo at 2.30pm. I can sit in the Solaris Centre after the radiation oncologist and have a treatment if I like. I will have to get an uber home as transport cut off is 3.30pm. Wondering if I should try rescheduling all appointments except the chemo or just get it over with? Tired just thinking about it! Plus an education session today - 2 hours in driving all up and 90mins there. Guess everyone is overwhelmed. Sore throat, rain and tiredness not helping.☹
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Comments
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Treatments certainly keep us busy & tired. All the best for chemo. Don't forget to tell your team about any side effects. They will help you get on top of it.1
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Best of luck. You'll be an old hand at this in no time. One step at a time. Kath x1
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Thanks ladies! I actually had a "bugger this!" moment of clarity and decided to ring up and reschedule everything except for the chemo. And when I said I was overwhelmed and battling a sore throat on top, amazingly people juggled and it appears that I can go in an hour earlier on Monday for an in chair education session prior to chemo. So I am doing the main important step...and let this be a lesson to me to do things one step at a time or I run out of steam. As a patient so far I have been coming when called, and not considering that if need be, I can request another time or day if too tired or booked up. Of course I want to be as amiable as possible but I think I now need to start having a hand in steering the ship. I'm a bit of a people pleaser so this might need to include me too now!2
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Big huggs all best for therapy..yes you have taken command inner strength is back you are strong. Good vibes for weekend.Cheers bright2
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Good luck viking1.1
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Yay, Bright, that's a cool way to see it...after all, I am Lagertha! What was I thinking! Lol...0
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We love our norse blood line yeh!1
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Oh great stuff. I've never heard of anyone doing chemo and radio together anyway (I'm sure they are out there) , it would be exhausting.0
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We actually do have a Norse bloodline lol ... my mother's maiden name is Rayner, which goes back to Ancient Scandinavian for Ragnar. I haven't done any pillaging recently ... unless you count Tim Tams!
Sorry Kath ... my chemo and rad are separate but the rad oncologist wanted to see me now. They seem to be way ahead of my actual radiation time frame but I read about all the prep they do beforehand.0 -
Good luck with the Chemo.1
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Good luck with it all.....yes there are so many appointments and different Drs and so much information it's no wonder our heads are in a whirl.
before you know it you will be organising fitness classes, yoga lessons and meditation lessons. Just realise you are number one in this process.
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Hi Ladies,
Sorry for the delay but if I'm not on here it usually means I'm in the foetal position trying to 'flight' vs 'fight'. The actual first infusion was okay. After I took the steroid tablets I had a reaction about 5 mins later ... heart fluttering, joint and back pain, low temp (35.1) then warm but not high. Immediate stomach ache and headache. Heartburn. After 2 hours this subsided. Got a repeat of heartburn at 3am. Drank heaps of water as instructed. Next morning had a repeat of same symptoms and again lasted 2 hours. Kept fluids up and met a friend for a two hour coffee. Thought I was doing great! Sadly although the heart prob stopped (I rang onco and she said come in if continuing) I continued downwards into joint and back pain, cool and warm but never "normal" and agitated depression which I haven't experienced to this extent since 26. Now 52 my meds are controlled and although I get bouts of anxiety, not to this extent. So it seems after talking to my breast physio today that I really need my meds to work in sync with the chemo. I see the onc on Thursday so this will be my main agenda. After lying in bed from Wed to Monday I was pretty over it. I know that's ridiculous given people's personal situations, but I was seriously questioning if I could cope. My physio, bless her, said a few days down is 'normal' but this is obviously to do with my depression and anxiety. If we can handle this, then the chemo should smooth out. If I take some prescribed diazepam 10mg, from my psych and an anti nausea pill, the metoclopramide, 10mg I find I can eat and do some small tasks like shower and wash up. I also found I was having a great deal of pain under armpit where lymph nodes removed. Obviously, I don't want to abuse the benzos as I know they are addictive. However, I want to get through this. I can't be pacing the floor at 3am till 7am looking for a way out. Pity you can't go into an induced coma and come out the other side! I wonder if anyone else has issues with clinically diagnosed depression and anxiety prior to treatment? Tips are welcome! This week it looks like my issues will be sorting constipation with diet, metamucil caps and coloxyl...finding a balance that doesn't bring back IBS. Also taking multiflora, plus Vits ADEK and 300mg turmeric. Gargling 3x daily as sore spots arise in mouth. Diffusing essential oils after hospital trips and fighting a throat that is not sure if sore or not! I haven't felt nauseaus, touch wood, but took the anti nausea med in case it helped with heartburn and stomach pain. The heartburn is pretty regular. I got mylanta but physio said to check with onc in case they have something better. Unfortunately my initial onc is rotating so I will see a new one on Thurs and go through story again. Thank God for my breast physio who I check in with...she knows all the right questions! Heart scan was today .... woke at 3 am and was at hospital till 3pm. Frequent flyer miles clocking up! Thank you for listening and if you want to slap me for having a day 7 sookaroo, please do! I feel a fool with this damned anxiety which seems to have no clear reason for existing and has been absolutely crippling for no good reason - or tangible reason that years of therapy can divulge. Did do some mindful meditation at Solaris Centre and it was great. Looking forward to restorative yoga later on and being in the present...not my head! Love to all you stars xxx
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Nexium for heartburn got me through chemo. You can get the 20mg version at the chemist, but I needed the 40mg which you need a script for, probably a good idea if you have to check interaction with other meds.
Constipation an issue with FEC chemo, but diarrhoea a big issue with Docetaxol for me. I also have IBS. I used long thick pads, because it was sudden and unpredictable with faecal leakage. Just to add another insult to the demoralising side effects. Gastro stop was mildly effective, but the diarrhoea was constant for 10 weeks.
I hope you can get through the course okay, it got easier for me to manage the side effects each time.
And have a good winge, chemo is shitty, so feel free to say so.1 -
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