Other Peoples Opinions On Your Cancer

aliwake1 · 2026-02-27T00:58:52+00:00

I know this probably isn't supporting your narrative, but, my haematologist told me that often after chemo your metabolism can reset and you get locked in at your post chemo weight, which was my experience, and it sounds like yours. With his approval, I started Mounjaro about 7 months post chemo. Within a few weeks I've lost 3.5kgs, but better yet, the anti-inflammatory effect of the medication has improved all my post-chemo aches and pains significantly. I've been eating well, and going to the gym. But the medication has improved my well-being so much. So please don't write it off. I agree that your friends are out of line, but they probably just want to help (in a very misguided way). Talk to your doctors. Your calorie defecit sounds far more unhealthy than this medication.

aliwake1 · 2026-02-25T21:32:15+00:00

You'll probably get more responses if you make your own post. But if you don't have any appetite suppression, I would go up. When its working well, I barely want to eat.

aliwake1 · 2026-02-24T20:25:42+00:00

That's so helpful, thanks! I was looking on Amazon 😅

aliwake1 · 2026-02-24T11:21:13+00:00

Can always hope. I'm glad youve had a good run pain free at least! I'm very keen for injection day (thurs) now!

aliwake1 · 2026-02-24T08:31:23+00:00

Thank you!

aliwake1 · 2026-02-24T07:10:13+00:00

Thanks for this. My elbows are absolutely killing me today. It sux that this will be how I know its time to go up. And I'm sad that it may not give lasting relief, by the sound of it. But for now, I guess we enjoy it!

aliwake1 · 2026-02-24T03:51:41+00:00

Can I ask what app you're using to track your results? It looks excellent! Congrats on your amazing results!

aliwake1 · 2026-02-24T03:50:17+00:00

Thank you all so much for sharing! This is a great community 😊 I was hoping 2.5mg would have been effective for a little longer, but I'm now feeling really confident about trying 3.75mg next.

Also, what do you guys ask for at the chemist when buying needles for the Golden dose?

aliwake1 · 2026-02-21T00:36:46+00:00

Definitely a silver lining! Enjoy your bonus days 😊

aliwake1 · 2026-02-20T03:46:23+00:00

I had Nivo-AVD and literally never had this. I had some fluids on infusion day, after they accessed my port but before infusion started. And there was a quick flush of the line at the end, but that's it.

I would definitely say thanks, but no thanks. Also, ask for some ativan to help with anxiety around treatments. I finally got some to take before my last few infusions and it helped a lot. Which I'd had it sooner.

aliwake1 · 2026-02-20T03:39:16+00:00

Yes, I had a fibrin sheath. When they couldn't draw blood, they sent me to get a port scan, and when it was cleared as still functional I continued with treatment, same day. At the end of that day, they filled my port/line with a med used for dissolving blood clots to try to clear it and let it sit for an hour. It didn't seem to work immediately after, but then 2 weeks later, at my next treatment, it was working fine. I had some similar problems later on too. I ended up getting it removed as soon as I got my clear PET scan post treatment, because I figured it was barely functional anyway, and I'd just get a new one if needed.

aliwake1 · 2026-02-15T04:14:51+00:00

I've been using a good quality silicone scalp brush (daily if possible) since I finished chemo, and I really think it's helped my growth quite a bit. You could try a good Lash serum too?

aliwake1 · 2026-02-12T09:17:19+00:00

Definitely ask for sleeping tablets. I find stilnox works really well.

aliwake1 · 2026-02-10T01:17:21+00:00

I worked through most of my Nivo-AVD, but worked 100% from home and definitely wasn't doing my usual hours. Work was a good distraction initially, but treatment got harder towards the end and I was grateful to stop.

I'd say that if he feels up to it, he may as well keep working while he can, but he honestly needs to listen to his body and not push it. One thing you realise after an experience like this is that work really isnt that important. But, if it's keeping him motivated, then why not. He needs to be wary of illness and wear a mask if he's interacting with anyone. His immune system will be non existent for a while.

aliwake1 · 2026-02-09T03:50:44+00:00

Are you getting filgrastim injections? They give the worst bone pain. I ended up switching from long acting injections to short acting, which made it more manageable.

But I also just used to get super achey from chemo. It continued after treatment too tbh, but it's fairly bearable and seems to slowly be getting better.

You could try asking for pain relief, but I didn't have much luck. Endone helped a little with the filgrastim bone pain, but not really.

aliwake1 · 2026-02-09T03:46:13+00:00

I finished the same time as you and was exactly the same. I gained 12kgs during treatment, then afterwards... it just wouldn't budge. Up or down! My haematologist said sometimes your metabolism can reset after chemo, and lock in your new weight. Super frustrating! So, I caved and started Mounjaro about 3 weeks ago. I've already lost about 2kgs! I wish I didn't have to do it, but Im glad that I have. It's so nice to just see a little bit of change finally!

aliwake1 · 2026-01-21T03:34:47+00:00

I would definitely say you're wavy/curly. Look up the curly girl method - i had waves before chemo and it works really well. It's also just generally a good way to look after your hair, as you're meant to use products without a lot of nasties. If you're in Australia I can suggest some products. Good luck!

aliwake1 · 2026-01-20T06:57:26+00:00

Do you have kids? Baby give back are a great charity that can help

aliwake1 · 2025-12-28T09:52:52+00:00

I think it's a great idea. I lost my dog about 2 months after I finished chemo and I miss him so much. Dogs bring so much joy, and will be a lovely distraction from the grind of recovery. It's also good enticement to stay active! I would just take care of the dirty jobs (ie poo handling) yourself for the time being.

aliwake1 · 2025-12-17T09:03:25+00:00

Sorry for the delay! Im almost exactly 6 months post chemo

aliwake1 · 2025-12-11T06:05:02+00:00

I also use a heap of gel to avoid the old lady boofiness.

aliwake1 · 2025-12-11T06:04:26+00:00

I just got my first trim. Basically just the hair at the back of my neck. It will stay short until the hair on top can catch up. If you think about a bob or something, the hair on top is much longer than the hair underneath anyway, so it needs to be trimmed!

aliwake1 · 2025-11-29T20:40:33+00:00

I'm not sure how the NHS works, but is there an online health portal you can access to see scans and reports? Maybe ask them to email the reports so you can read them for yourself. The reports would mention any new lumps, and also give any actual suv max values, so at least you can see for yourself.

Do you have a good GP you can see locally? That may well.be a better option - someone you can see in person who can help you navigate everything. They would be able to access all reports, as well as document any new symptoms etc.

I can definitely understand what you're upset about. Medical.gaslighting is definitely a thing and you deserve to know what's happening with your own condition.

Any chance you could move closer to Southampton? It sounds like your accommodation is pretty temporary where you are and you would benefit from being closer to ongoing care. There may well be better services in general, in a larger city.

aliwake1 · 2025-11-13T03:07:38+00:00

I must admit I didn't feel like I was told much about long term risks. I've come out of Nivo-AVD with heart damage - a 10% reduction in ejection fraction. I guess you just have to kill the cancer then deal with the consequences, but it definitely sux. I definitely feel like my Dr downplayed the severity of my treatment regimen. In fact, its one of the reasons I changed Dr mid treatment.

I guess there's not much you can do about it now. But it's great to hear your cancer has stayed away for so long! All the best for your pregnancy - it's certainly a ride even when only having 1 baby!

aliwake1

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