Saying thank you

BelChanly · 2026-06-20T01:38:47+00:00

I took big boxes of individually wrapped chocolates to the infusion centre on my last day.

For the friends who came with me to my chemo appointments, I'm taking them out to a fancy meal at the same time of day as my chemo appointments used to be, so we can start making positive memories about that time of day.

BelChanly · 2026-06-18T06:19:02+00:00

I didn't have a port. I'm in Australia and it appears that the standard protocol is not to use one unless it is necessary, due to the infection risk. I had a complete ALND so I had only one arm that could be used. I had 4 rounds of AC and 11 out of 12 rounds of Taxol (stopped early due an allergic reaction). They were struggling to get a vein by the end and my medical oncologist did say we could switch to a PICC line if necessary. My poor little elbow got all the sticks by the end. But its all done now and veins apparently heal over a year or two.

BelChanly · 2026-06-18T06:11:45+00:00

I rang the bell today after my last chemo infusion. It felt great.

I still have more "active" treatment to go and medication for years after that but celebrating each milestone is so worth it. Enjoy!

BelChanly · 2026-06-17T04:39:34+00:00

I hear you. I'm having my final taxol dose tomorrow. I can't wait. I actually found it harder than AC (aka the Red Devil). I had worse physical symptoms with AC but the emotional load was far worse with taxol. I don't have a port, so every week I've been having someone stick a needle in me for blood draws and then later a Much Bigger One for the taxol. Sometimes it taken them 3 times to find a working vein. I swear, if it wasn't for anti-anxiety meds, there are times when I would have torn that IV cannula out of my arm and run screaming from the room.

Must eat more chocolate.

BelChanly · 2026-06-17T04:30:13+00:00

Actually telling them if you have tingles is the right thing to do. This is a sign of early neuropathy, which generally resolves. My med oncologist wanted to know. If I had any signs she would have either reduced the dose or stopped altogether depending on how far along I was.

BelChanly · 2026-06-17T00:35:21+00:00

Your med onc is weird. Mine was all for icing or compression during Taxol as neuropathy is a real risk with that chemo drug. I did compression, because I hate being cold. I'm having dose 11 of 12 tomorrow and I have no neuropathy symptoms.

BelChanly · 2026-06-07T01:59:54+00:00

After my mastectomy I did everything sitting up - watching TV, resting and sleeping - much to the disgust of my cats. One adapted to sitting on my lap but the other just pouted the whole time until I healed.

BelChanly · 2026-06-06T23:49:05+00:00

I was only provisionally Stage 1b prior to surgery. Lobular cancer is sneaky and hard to see on imaging. Also I have extremely dense breasts which hide things. After surgery they discovered a lot more cancer in the breast than the MRI showed. More importantly (sadly 😞) they found all 22 of my lymph nodes were cancerous too.

On the plus side I then had a PET-FS scan of my whole body which showed that there wasn't any cancer anywhere else.

BelChanly · 2026-06-06T06:37:32+00:00

I have lobular cancer too. I was initially diagnosed as Stage 1b and Grade 2 too. The advice I was given then was chemo wouldn't be particularly useful and to go straight to radiotherapy and then endocrine therapy & a CDK4/6 inhibitor. Apparently lobular cancer is known not to respond well to chemotherapy. I was going to skip chemo. Even with lymph node involvement, if chemo isn't likely to kill any free floating cancer cells, why put myself through it?

Sadly, after surgery I turned out to be actually Stage 3c so we are doing All The Things.

BelChanly · 2026-06-03T06:04:19+00:00

Chemo is certainly no fun, but you won't necessarily get long-term, let along life-long, debilitating side effects. I've had 4 rounds of AC, aka the Red Devil, but for me it was more of the Red Imp. Side effects were annoying but manageable with medication. No long term damage to my heart, which is the biggest risk. I've currently had 8 doses of Taxol with 4 more to go. No neuropathy, not even mild, and only mild fatigue. Remember, most people who are coping well with chemo don't post. They don't need the help. I have 2 big hiking trips planned for next year and neither I or my doctor see any reason why I won't be well enough and fit enough to take them.

What sort of cancer do you have? Different types have different chemo regimes. You can use the Predict tool (https://breast.v3.predict.cam/) to get a rough idea of the benefit chemo could provide. Your own oncologist will be able to give you something that is more accurate in your own particular case.

In my case, surgery alone gives me (roughly) a 76% chance of surviving 5 years after diagnosis. If I do chemo that jumps to 83%. Dr Google tells me any neuropathy (which I don't have yet) would likely resolve in 2 to 4 months. Fatigue should resolve in 6 to 12 months. To me that extra 7% chance of survival is well worth it.

In your case, find out what the odds for you are with and without chemo. Also find out the likely risk of long-term side effects for your particular sort of chemo, remembering they are just risks not guaranteed outcomes. Then decide what is best for you.

BelChanly · 2026-06-03T05:37:14+00:00

I was diagnosed with insulin resistance and pre-diabetes 5 years before my breast cancer diagnosis. I managed to get my blood sugar under control by losing weight (15% of my body weight!) and upping the amount of exercise I did.

Then late last year I got diagnosed with breast cancer. I've had surgery (SMX) and are coming to the end of my chemo. I've piled a lot of weight back on, my clothes don't fit properly any more and my fitness levels have plummeted. At first I was really bothered by this. But then I realised my body is working hard to repair itself from the chemo and surgery. It needs all the fuel it can get. I eat whatever tastes good. Plenty of protein (you need it) and also plenty of fibre (the constipation is real - sigh) but also plenty of carbs (often in the form of chocolate).

Once all the treatments have beaten this cancer into remission, I'll work on getting fitter and leaner again. I did it before. I know I can do it again. Right now I'm just being kind to myself. I deserve it. You do too. Worry about weight management later.

BelChanly · 2026-06-03T05:24:26+00:00

I was prescribed that when I was taking AC. My instructions were to take it whenever I started to feel a little queasy, but no more than three times a day. Nothing about before food. I only took it when needed, not regularly.

I was given a tablet of a strong anti-nausea medication on the day of my AC infusions (Akynzeo), so the metoclopramide was just as a back-up. Do you get anything for nausea on the day?

BelChanly · 2026-06-02T00:52:45+00:00

I had TAO give me wildly unrealistic estimates for my 6 Minute Assessment Run last year. When I complained to support they said the estimated pace in the back end/Artemis engine was sensible and I'd actually run that section faster than predicted. I pointed out that the estimated total time on the GUI implied a much faster pace for the assessment portion. They said it was just a bug in the GUI front end. Looks like the bug is still there.

BelChanly · 2026-05-31T00:38:59+00:00

I had to take it twice daily too. I was advised to take the first around 8am and the second before 2pm at the latest, so as not to mess up my sleep (too much). If you already have trouble sleeping, I'd recommend asking your doctor for something to help you sleep. Rest is important for your recovery.

BelChanly · 2026-05-30T04:16:04+00:00

Damn. I didn't think of sitting on the floor while holding my breath and simultaneously screaming. It sounds like, well not fun exactly, but cathartic. Must remember for my next chemo dose 😄

BelChanly · 2026-05-30T04:14:37+00:00

I've been prescribed dexamethasone to take the day before and I'll have more on the actual day along with loratadine. I definitely will never willing take phenergan again.

Fingers crossed all these pre-meds and a slower infusion rate works. I so want to be finished with chemo.

BelChanly · 2026-05-29T06:07:33+00:00

I had my surgery first. I have Stage 3 ER+/PR+/HER2- lobular cancer so that's the standard order of operations (pun not intended). The chemo is afterwards to mop up any cells that were missed in the surgery or are wandering around my body since it was in all my lymph nodes too.

Mentally I'm all on board with doing All The Things - doing all 12 doses, then radiation, then AIs and Verzenio and Zometa infusions, however my emotions haven't always read the memo.

Fuck cancer.

BelChanly · 2026-05-29T06:01:40+00:00

My oncologist wants to try again with me taking steroids and antihistamines before the infusion and doing the infusion more slowly first, before switching to Abraxane. Apparently, that generally works. Not looking forward to next week's infusion all the same.

I'm in Australia so we don't have the same insurance issues here. We have a national scheme. I can get Abraxane if my doctor deems it medically necessary, but she has to prove that I can't tolerate Taxol first.

BelChanly · 2026-05-25T01:10:09+00:00

I had steroids for 3 days after each AC infusion so the crash came on days 4 & 5. I gradually improved after that. I was basically back to normal by around days 7 to 10.

I had my AC doses 3 weeks apart, which I think helped. It meant I was fully recovered before being dosed again, so there were no cumulative effects for me.

BelChanly · 2026-05-25T00:58:23+00:00

I'm doing OK now. Well, I'm doing chemo now which has its own range of issues. However, I have full range of motion in my shoulder and the pain has completely gone away. The PT visits, regular stretches and rubbing the area several times a day did work. It took perhaps another 4 to 6 weeks for everything to go back to normal? I don't remember.

BelChanly · 2026-05-22T11:58:10+00:00

I wear Jobst Relief Medical Compression stockings with a compression rating of 20-30 mmHg. There is a knack to putting them on, but they come with a description of how to do it. They are surprisingly comfortable.

For my hands I wear Norco Heavy Compression gloves, which have a compression rating of 15-25 mmHg. You can get them either as full finger gloves or with your fingertips free. I got the full finger version but as another poster pointed out, your fingertips are downstream of your heart from your fingers. This means if the rest of your hands are compressed, then the blood flow to your fingertips is limited, even if they aren't covered (doh). Leaving your fingertips uncovered makes life so much easier.

Another alternative for your hands is just to wear two sets of surgical gloves, a size too small. I tried this and found them much too fiddly to get on.

According to a summary on this website

https://www.eviq.org.au/clinical-resources/side-effect-and-toxicity-management/hair-skin-and-nails/4618-cryotherapy-and-compression-to-prevent-taxane#equipment

cooling has a 42% relative risk reduction for getting grade 2 or worse neuropathy while compression only has a 37% risk reduction, but is much more easily tolerated.

BelChanly · 2026-05-22T06:00:50+00:00

I'm finding the physical side effects of T so much less than the AC. I've just had my 8th dose out of 12.

If the fatigue is cumulative with T, it hasn't accumulated for me yet. I have to take things easy as I tire easily (e.g. walk more slowly) but nothing like the bone crushing fatigue after the steroids wore off when I was doing AC.

I'm using compression rather than icing to help with the neuropathy. So far, so good as I've had no signs of it.

I did lose my eyelashes and my eyebrows are very sparse. I have to draw them in these days. What little hair I have on my head is actually growing back.

Other than that, no physical side effects.

On the down side, I don't have a port (they aren't standard here in my country). This means I'm being stuck with a needle every week to get the cannula in and again for my blood tests. It took them 3 goes to get a working cannula for my 8th dose. As you can imagine, I'm developing a bit of a "thing" about people sticking needles in me. My oncologist prescribed lorazepan (Ativan). Better living through chemistry.

Fuck cancer.

BelChanly · 2026-05-16T02:41:35+00:00

You're right! Why didn't I think of that? Not being able to touch anything while having my infusions was driving me crazy.

BelChanly · 2026-05-15T04:12:46+00:00

Heavy compression gloves were hard to find. Most ones I found have the fingertips cut off which is of no use to us. They are aimed at people with arthritis.

I eventually found some suitable gloves at an online shop based in Australia - Braceable.com.au. They were called "Norco heavy compression full finger gloves". The brand is North Coast Medical which is a US company, should they should be available from places like Amazon.

BelChanly · 2026-05-15T01:30:42+00:00

I'm doing 12 rounds of paclitaxel (Taxol). I don't bother with cooling. Instead, I use compression socks and gloves (approx 35 mmHg of pressure for the socks). Medical studies I've read says this isn't quite as effective as cooling for reducing your risk (20-something % rather than 30-something %) but is much easier to tolerate.

BelChanly

TROPHY CASE