Awaiting bone scan results...

Inky

Hi there,
I feel a little like I've been on a roller coaster and not a very fun one!
I've been reading a lot of posts and feeling overwhelmed at times, also realising no two people have the same experience.

I was diagnosed 3 Feb and had lumpectomies /partial mastectomy, (both boobs,)  surgery on March 21, with sentinel node biopsies.

Got the surgical report on Tuesday and it was not what we'd hoped for, they found cancer in the sentinel nodes, and so it now means chemo and a different treatment plan. 😬

Had the bone scans and CT on Friday, and then I meet the oncologist on Tuesday for the first time to talk about the results and options. 

At this stage they're talking  about 3 months of TC chemo, after the surgery wounds have healed. 

I'll hopefully know more on Tuesday.🤞

I was hoping to be able to continue to work through the treatment but is this completely unrealistic?
Unfortunately I don't have sick pay as I work on a casual basis. (Full time)
I teach adults at a school in the city, and also take the tram , which I know isn't great for avoiding germs with lowered immunity.

What else have you done to boost your immune system?
Does anyone have experience of receiving chemo at St Vincent's Hospital (public)?

Sorry about the long post!
Thank you

😘

jennyss

Dear @Inky,
You are right in realising no two people have the same bc experience. I had a lumpectomy followed by chemo five years ago. I did not work through my  fairly easy chemo experience. I returned to full time casual work two months after radiotherapy finished. Now happily retired! Others will give you more good  information. I will just say

from jennyss in Western NSW

iserbrown

@Inky
It's a so and so isn't it to be in this predicament!
My family have had good experiences with StVs, not specifically the Cancer treatment
As to catching a tram, by all means use the trams, easy to get around but constantly sanitise and wear a mask...it's about protecting yourself 
The State government came up with a scheme that may help you. Here's the link
https://www.vic.gov.au/sick-pay-guarantee

Afraser

Hi @Inky

Your wish to continue work through chemo is perfectly understandable. It’s also possible but not necessarily in your control. I worked through 6 months of chemo (A/C and Taxol) with no fatigue or nausea, but if there is any way to tell beforehand how you will fare, I am yet to discover it. It doesn’t seem to relate to attitude, age, general health or anything easily identifiable. Some people are OK (still be coping with some side effects but manageable) and others are temporarily floored. I worked in events so office staff, lots of external contacts, crowds and was fine. You may need a plan A and a plan B. Also to think about whether you feel comfortable telling people about treatment (I told my boss and colleagues, who probably told everyone else!) and managing the more public side effects like hair loss. Best of luck! 

Inky

Thanks so much for your responses everyone 😘

It's so good to get feedback from people in the know, and with lived experience.

My boss at work actually had a Lumpectomy herself years ago, and she and my colleagues are very supportive. I've told the majority of people now (I 🤔? 😅)

Yes, the hair loss will be interesting...😬
I used to have very short hair in my early twenties, but that's 30 plus years ago now!

I'm trying to keep a sense of humour throughout, but definitely have to limit how much I read sometimes, as it gets overwhelming quickly.

I had my first social outing in weeks today, and the combination of sunny day and seeing some friends had been a great lift in spirits.
Hope everyone has had a good weekend.
X

Abbydog

I hope that the news on Tuesday is good.
I believe then you will have your stage, and complete treatment plan.
My diagnosis and treatment was all in 2020, when Covid was new.
I am Stage 2 Grade 3
I was one of the luckier ones, most of my treatments (Mastectomy with Axillary clearance, Chemo AC + Taxol, and 5 weeks Radiotherapy) went well. Only less serious side effects, that were manageable.
I used Income Protection insurance, because I had it in my Super.
I'm a nurse, working in a hospital, with some infectious patients.
Retrospectively, I could have worked most shifts. I may have got more fatigued, had I worked.
I did not have any nausea. 
I did not lose my hair, as I used the Cold Cap. It doesn't work for everyone, but worked well for me.
If you try the Cold Cap, you will know after a few treatments, if it is working.
The downside is that it adds extra time at Chemo.
It is put on 1/2hr before and left for 1hr after.
You may well be able to work. But there is no way of knowing beforehand.
Some people do get some nasty side effects. Be aware of the possibilities and seek proper medical advice, 
if you have symptoms.
I would advise Covid and flu vaccination prior to Chemo. Ask your Dr's about having it if treatment has commenced.
Wear a mask and sanitise frequently.
All the best with your tests, and treatment to come.
Write any questions down as you think of them, to ask when you see the Drs and Nurses.
When Chemo starts ask for an after hours phone number. Most Chemo suits have one, to give guidance especially should you have more serious side effects, eg Fever

arpie

Any word on your scan results, @Inky?  I hope you are going OK xx

Inky

Thank you! 😘
The bone scan results seem like a Lifetime ago now, I'd almost forgotten. Good results on all the tests, and I started TC chemo a week ago.

I've been feeling like a zombie this week. 🤦‍♀️

I had a reaction a minute in to the transfusion 1, on Friday so they paused it for a while .I went really hot and red and had sudden really bad lower back pain. 🤦‍♀️ Dr came immediately, and nurses. They're all lovely.They  gave me antihistamine injection and more steroids. Started up the chemo again after 30 min or so and at a  slower rate and it seemed ok. I'll have to double the steroids before the next one, 😳

I haven't worked this week at all , I'm hoping to be well enough able to work part of next week ? 🤞😬 

I feel frustrated with the lack of energy/ fatigue but also have to remind myself I can't really change it...

I've had a few shockers overnight with stomach pain and loo trips 🤦‍♀️😳

My throat has decided to get involved now, super sore. 

Currently have a heat pack on for the *deep* bone aches 

I've been trying to write down the side effects .... some weird boob pain, and numbness.

Flushed face, crazy internal thermostat! Everything tastes bland or sweet.

My temp got to 38 last night, I'm supposed to go  to emergency if that happens because of the risk of infection, But it did come down again within 15 minutes.
Sorry about the length of this comment.😬
Fingers crossed for the random, ever evolving side effects now 😳😅

I hope everyone is doing well and having a good weekend 

Abbydog

Good news re Bone Scan.
I hope that you had been warned that some people have an allergic reaction to that Chemo.
I  was certainly warned, and watched closely. I was lucky and didn't have that problem.
Sounds like they took good care of you, and have a plan for future chemo.
All the best with your treatments,
Take it easy when you can.

Fufan

Hello @Inky.  I had the same chemo as you: 3 months of TC (4 cycles).  I, too had shocking stomach pains, for which my oncologist really had no answer.  It didn’t feel like constipation, but perhaps I should have taken more laxatives. That was really my only serious side effect, and I came good after a week, so hopefully you might too.
As to the temperature, my oncologist definitely regarded this as an emergency, and said at 38 I was to go straight to emergency and tell them to start intravenous antibiotics immediately, without waiting for test results. This never happened to me, but I think I would advise not to hang around.  Better to be sure than sorry.
My only other recommendation is to exercise as much as you can. I know you won’t feel like it, but it will be worth it in the end, believe me.
All the best.

Inky

Thank you!
It's a beautiful autumn day today and I managed to make some toast and Vegemite, and have some sips of coffee (although it doesn't taste like coffee!)
 so that's an improvement on earlier in the week
💪
I've had the er... Opposite to constipation 😕
And I've had to try eating the brat diet for a while to try to get on top of the diarrhoea.

I've tried to do a small walk each day this week but in reality most of those were only a shuffle/ heavy limbed stroll.
@Fufan Did you have any energy in that first week after chemo? I just felt utterly, utterly drained.

I hope to be able to walk more this week and try to do some simple yoga for stretching as I'm feeling a little bit like I've aged 20 years...
I hear you about the temperature 🌡️! It was the middle of the night and there were a few things going on,  but I'll definitely pay more attention to the numbers now. 👍

Virtual hugs
🤗

arpie

Great that you've managed some nibbles today - small bits often is better than sitting down to a meal.  It doesn't matter WHAT you eat - so long as you eat xx If you fancy ice cream, eat it xx. Hubby really enjoyed a chicken casserole/soup that was just a bag of chopped veg (from Woollies), plus a packet of chicken noodle soup & 4 drumsticks & enough water to cover it, boiled up for 1.5hrs & the bones removed xx YUMMY

I hope your work is sympathetic to your diagnosis & treatment ... if you can work from home (if you are up to it) is better than going in to an office & mixing with people who may pass a bug on to you - you do NOT want to get bugs!

So sorry you've had those extreme reactions to the chemo - your onc should give you a script for the diarrhoea ... hubby had it with his treatment too.  Gastrostop is pretty good. ....  you take 2 tabs immediately after a 'session' .... it usually hits it on the head pretty quickly xx  Hubby also had that 'almost allergic' reaction at least once ... and they stopped the infusion, then all was good again.  

Make haste slowly with the exercise - be kind to yourself - and gentle. xx   You'll notice a 'pattern' after a while - often about 4 days after the infusion, you are extremely tired & it is best to just put yourself to bed & ride it out .... then you'll feel much better & 'have a life' again til the next infusion xx

Re the temp - ABSOLUTELY go to ER (even ring 000 & say you're on chemo & got a high temp) if it gets up there again as it is not good to stay at that temp for long .... they will get to you asap ...  I took hubby to hospital a couple of times for infection & dehydration too - so make sure you keep up your fluids xx

enjoy sitting out in the sun whilst the weather isn't too bad - but also be aware that some of the treatment may make you get sunburnt more rapidly ... so ask your Onc about that too. xx Or just cover up ...

take care & all the best xx

Fufan

@Inky, I actually felt quite energetic for a day or so after my chemo.  Then it hit.  Be kind to yourself: concentrate on what you have to do.  Eat, take fluid, exercise, rest.  Let someone else do everything else.  Or just leave it for a week: the world won’t collapse.
Best wishes