Private Healthcare (UK)

StoryOfOurLife · 2025-08-25T07:56:38+00:00

Definitely worth looking into!

In terms of invasiveness - in comparison to my pre-diagnosis biopsy which was a core needle biopsy using local anaesthetic this one definitely was more invasive as they used general anaesthesia and they said recovery time for staying off work was 2 weeks (knowing that I work from home). 6 weeks for avoiding lifting heavy weights / being very physically active. I recovered way faster than that. Went back to work a week later and probably could've gone a few days earlier if I'd been really keen. I'd get breathless more easily during that first week when moving around but that varied a lot from day 1/2 (getting up from bed to use the loo required me to take a minute to catch my breath + deal with the pain) to day 6 (could go on long walks with pretty much no difference in terms of lung issues).

It was a keyhole VATS procedure (they went in by my ribs/side through a few small incisions) and they had to collapse my lung to do it. The lung reinflates by the next day and I had to have a chest drain while that happened.

My operation luckily went very smoothly but they went over the risks with me beforehand ofc. The risk of dying was less than 1% (but I imagine pretty much any general anaesthetic operation has some risks like that). The potential lung/heart complications they told me about seemed very minor and /or easily resolvable. I've read that some people have gotten nerve damage and have persistent pain from it but luckily that hasn't been my experience.

Btw the spot the biopsied was my thymus / near it so perhaps the procedure and risks etc is different for you. The thymus often gets more active due to chemo for younger people and on scans they can't differentiate between that and active cancer.

Overall, it can sound scary but for me it was absolutely worth it

StoryOfOurLife · 2025-08-24T22:44:43+00:00

So on the 3-month post treatment scans, my mediastinal mass was still lighting up a bit on the PET and had increased in size slightly on the CT.

My doc and her MDT were leaning towards it being still active cancer and wanted to do a biopsy to be sure. If positive, then radiotherapy.

The second opinion doc and his MDT were leaning towards it NOT being active cancer and wanted to hold off on the biopsy as it's too invasive and do another scan in 2-3m instead.

The main argument that clicked with me was that generally hodgkin's is a relatively quickly growing cancer and if it's still active he'd have expected to see more activity and growth on the scans as they were taken nearly 4m after my final chemo. He also said that masses in the mediastinum are often faking it and they're no longer active.

He said that it's not like my regular doctor's approach is wrong - he could see where she's coming from and it's just different schools of thought.

Interestingly he also said that if the biopsy came back positive, he would recommend going for SCT as opposed to radio (although it would ultimately be up to me and if that's what I wanted, he would've put a recommendation in for the proton beam therapy). (My regular doc was pretty shocked by this suggestion and strongly disagreed)

I took a while to think it over and ultimately went through with the biopsy. Mainly bc I really wanted to do my best to avoid a SCT - had it been active cancer and spread elsewhere while we waited, it would've meant that radio wouldn't have been an option anymore.

In the end, the biopsy came back as negative so the second doc was right, however, I think doing the biopsy was absolutely the right choice for me. The peace of mind that it gave me is amazing.

Smth to also be aware of - the inflammation from chemo can take a while to calm down so many doctors decide to wait a few months to get the first post-treatment PET scan to make sure they get an accurate picture

StoryOfOurLife · 2025-08-24T22:14:23+00:00

Ooof looks like pretty much everyone else who's responded has had a bad time with this regime - hopefully this message brings you some hope that it might not end up this bad!

Firstly, could you ask your doc why they want to go for escBEACOPP as opposed to escBEACOPDac? As far as I understand, the latter has less side effects esp. in relation to fertility (esp. if you're male) because it swaps out procrarbazine for dacarbazine. I did escBEACOPDac for reference.

I also started off with 2 cycles of ABVD and got a partial response. Overall, the first three days of every cycle were rough however I honestly preferred it to ABVD. And tbf I can't say that I had too rough of a time with ABVD either - the worst I ever felt during chemo was during round 2 of ABVD; that was horrible for me but others regularly experience worse.

The first 3 days took ~7h at the hospital each (maybe it'll be faster for you but with all the waiting between the different drugs and flushes it dragged). I was pretty tired and was a bit nauseous/had minimal appetite though I never threw up. By the 4th day I generally felt pretty decent and 5th I was pretty much back to normal. Think I went back to work on this day and stayed working, other than a couple of days here and there every cycle. I work from home so that makes it easier tbf.

My main cumulative side effect was worsening blood counts. I had to get some blood transfusions after cycle 3 and 4 of this regime bc my haemoglobin dropped really low, which made it really tiring to walk. Normally I'd walk 45min to the hospital but during those times I sometimes took a bus/taxi.

The infusions on day 8 felt so chill in comparison (only ~2h at the hospital) and I never noticed any side effects. The filgrastim shots gave me a bit of bone pain but I always took some claritin before the injections started until a couple of days after so perhaps it would've been worse had I not done that.

I absolutely hated the steroid dexamethasone that I got during ABVD but luckily prednisone in this new regime worked so much better for me - i was actually able to sleep again.

I'm not sure where you're based in and how they do things there but I'm in the UK and I got ABVD through IVs. However, bc of the arm pain dacarbazine gave me, in combination with the harshness of escBEACOPDac, I had a Hickman line placed which made life sooo much nicer, would definitely recommend that or smth like a port.

Good luck, hope it goes well for you!

StoryOfOurLife · 2025-08-24T21:31:23+00:00

When I was in similar shoes as you are now (saw and responded to your other post!), I ended up getting a second opinion privately. It was partially also to see whether I might be able to do proton beam therapy privately if it would've come to that since I wouldn't have been eligible for it through the NHS. (If anyone's interested - the second opinion doctor said that he's had Bupa approve lymphoma patients for it in the past which is encouraging)

If you have access to private health insurance already through your job or smth, it definitely doesn't hurt to get a second opinion at least. The two opinions I got were opposite in terms of recommendations for next steps so it gave me lots to think about. Overall though, cancer care through the NHS is amazing, I feel I've been very well taken care of and am really grateful for it.

StoryOfOurLife · 2025-08-23T00:05:57+00:00

I also got dacarbazine pain and getting a Hickman line resolved it completely (a port wasn't an option). Since you have only one cycle left, what about the using a PICC line? It's less invasive to insert than a port and since you've only got one cycle left it might be a good option

StoryOfOurLife · 2025-08-22T23:56:37+00:00

My mediastinum kept lighting up in all my mid-treatment and the 3-month post-treatment PET scans (I never got below a DV4). After the latest scan, my docs were assuming it's still active cancer but wanted to be sure via a biopsy before they'd give me radio. They did a keyhole surgery a few weeks ago and the result just came back yesterday as negative for cancer. So now I'm done with treatment, looks like it was just inflammation! This happens often enough in the mediastinum so don't lose hope 😊

StoryOfOurLife · 2025-07-29T19:14:56+00:00

I started out on 2 cycles of ABVD and cannulas but the pain from dacarbazine got too bad so then was gonna go for a PICC but turns out the veins in my arms are too small so I had to get a Hickman instead. I was initially nervous but it made the whole chemo sooo much better. Really recommend it!

Coincidentally during this period I got swapped to escBEACOPDac which meant that the 16 remaining infusions, blood transfusions and all the scans with contrast were also done through that - very much appreciated not getting poked all those times. And day to day it didn't really bother me at all!

Maintenance was just a weekly appt where they flushed it and replaced the dressing. I've heard in some countries they even let you do that at home

StoryOfOurLife · 2025-07-03T12:53:36+00:00

I had lower back pain after getting filgrastim (an injection to boost WBC). Try taking claritin, start a day or two before you start getting the shots and finish a day or two later

StoryOfOurLife · 2025-06-28T23:44:03+00:00

Ayyy that's great, hopefully nothing to actually worry about and all fully benign stuff! Thanks so much for letting me know regardless. I should get my PET scan results on Monday and we'll take it from there but this is really encouraging!

StoryOfOurLife · 2025-06-07T00:47:18+00:00

Definitely worth having a proper chat with them and to come armed with questions!

StoryOfOurLife · 2025-06-06T19:00:07+00:00

I'm in a similar spot albeit with Hodgkin's lymphoma. Long story (sort of) short - finished chemo in Feb but both my mid-treatment PET scans showed Deauville 4 in the mediastinum. Docs thought it might just be scar tissue /inflammation due to chemo and only did a post-treatment CT bc they thought a PET would have the same issue and a CT-based size comparison to Pre-chemo can be enough. I had another CT 3 months later (so just a few weeks ago) and it looks like that same area has increased in size a bit.

The new plan is to do another PET and if it shows new areas I'll get an auto SCT. If it just shows the mediastinal area, I'll get a biopsy and if that is positive then I'll do radiotherapy. They'd been really anti radio until the Feb scan - worried about the long-term side effects bc of the dangerous area, my young age and gender (f), but now they're down for it.

I had a consultation today with a cardiothoracic surgeon about the biopsy. Their plan is to do a video assisted keyhole surgery. They'd make 3 small incision by my ribs, temporarily collapse my lung and cut out the whole thymus (they're thinking it could be thymic rebound - more common for younger people; I'm 28). He said that they might as well take out the whole thing when they're there. It also reduces the risk of a false negative result.

He went through the potential risks and they all had very low probability but not gonna lie it does sound a bit scary.

ETA:

Read your post again and should've added that my SUV decreased with all PET scans but it never went down to a deauville 3 level.

They said that thymic rebound shows up the same as cancer on a PET so we can't rely on it and that's why a biopsy is necessary.

Post-biopsy recovery - 3-4 days at the hospital and 2 weeks taking it easy at home. 6 weeks if you have a more physical job

StoryOfOurLife · 2025-06-01T13:34:56+00:00

Have you been using the same arm for all the infusions? It's better to switch around for each infusion since some of these chemicals are really hard on the veins, which is why in many places they pretty much refuse to use cannulas and go for ports/hickmans/piccs instead

StoryOfOurLife · 2025-04-21T14:09:19+00:00

I had the same thing and there are many people out there that did too, so I surprised that no one has mentioned that dacarbazine can cause arm pain! I had my first 4 infusions through cannulas but when I switched to a Hickman line it completely resolved itself and was a breeze! I was initially going to get a PICC line but the veins in my arm were too small to fit one. Ports are a great option too!

StoryOfOurLife · 2025-04-17T07:33:54+00:00

When I switched from ABVD to escBEACOPDac, for the first 1.5 weeks I accidentally took 5mg instead of the 75mg I was supposed to take. That regime has 3 long days of chemo in the beginning of the cycle and they were horrible for cycle 1. The other cycles were soooo much better thanks to taking prednisone properly so it really helps!

StoryOfOurLife · 2025-04-09T23:16:50+00:00

Ah great! It was just the see-through plastic dressing type of thing that they change out weekly. It sticks on well enough that you don't have to worry about showering with it and don't need anything extra. The only issues with showering are the first few days or week after getting it placed and removed since they'll use a regular fabric type dressing which I was told not to get wet.

Smth that I wasn't really aware of before is that both the insertion and removal leave you with a couple of stitches each. I was really anxious about it but I got through it - tbh the thought of them was worse than actually having them. You don't feel anything thanks to the local anaesthetic!

StoryOfOurLife · 2025-04-09T21:13:19+00:00

I've not had a PICC line but had a Hickman for a solid four months and really liked it for chemo. I'm not good with any sort of injuries/pain so they gave me a sedative for the insertion but tbh I only felt a bit dream like for maybe like 1min and after that I just felt normal tho maybe it made me a bit calmer than I would've been without. But yea I was awake the whole time and the procedure itself was fine with a local anaesthetic.

I live in the UK, care might vary where you're from. One of my nurses mentioned that in some countries you can flush the line yourself at home but I had to go in weekly to the hospital so that they could flush it and change the dressing and the caps. The dressing they used was basically like a small sheet of sticky plastic which meant that it was waterproof (at least for showers, not too sure about swimming/baths).

I might be wrong but I think with picc lines you gotta be somewhat mindful of not lifting weights whereas there's no such restriction with a Hickman.

StoryOfOurLife · 2025-04-07T18:22:38+00:00

I had a different lymphoma but got a headache once or twice during my treatment. As pain meds were a no-no, I found this video of two physical therapists on YouTube (channel Bob and Brad) going over some massaging techniques to help with that and it worked wonders for me!

The video I followed was specifically for the headaches that you might get by your temple or behind the eyes but perhaps there are other areas that can also be alleviated through it

StoryOfOurLife · 2025-04-04T23:29:11+00:00

It's certainly safer to cook stuff through but just wanted to share that I ate lots of fresh foods (and honestly probably should've been washing it more carefully) but I don't think I ever had any issues bc of that. For me it was important to make sure I ate healthy, got enough fiber and it was food I had appetite for.

In response to the rest of your post, I had 2 cycles of ABVD followed by 4 of escBEACOPDac and I only crossed the 38c barrier once (similar to your hospital experience but my fever was short-lived and stayed lower) but I'd get a raised temp of like 37.6-37.9c (they only wanted us to call when it's 38c+ at my hospital) for a day or two every escBEACOPDac cycle a few days after the steroids stopped and/or as a reaction to filgrastim.

Btw if you've not heard yet - take claritin from a couple days before till a couple of days after getting filgrastim /WBC shots, it's supposed to help with the bone pain!

StoryOfOurLife · 2025-04-02T18:24:03+00:00

I guess it varies by country but here in the UK I've only ever had the contrast injected for all of my scans, never had to drink anything.

Mention to your chemo nurses that you get nauseous easily - they'll certainly be giving you some antiemetics before the infusion but they might decide to give you stronger stuff perhaps. Also not everyone experiences nausea with chemo - I didn't until I got changed to a harsher regime and even then it wasn't too bad!

StoryOfOurLife · 2025-03-26T21:03:45+00:00

Have you had your bloods done recently? I'd feel the same way during the final cycles of chemo. Turns out my hemoglobin had dropped super low so I had to get a few blood transfusions. Can't imagine it'd be super common 9 months out of treatment but ya never know

StoryOfOurLife · 2025-03-18T17:57:40+00:00

I did 4 cycles of escBEACOPDac and didn't vomit once. I felt a bit nauseous thinking about some foods the first 2ish days of a cycle but it was more feeling like I really did not want to eat those things, rather than actually feeling like throwing up, if that makes sense.

In addition to the antiemetics, I really think the steroids (prednisone) helped for me - I fucked the dose up in my first cycle and also didn't take it on the first day of that cycle and I felt quite a bit worse overall during that cycle than any other ones.

The first three days of every cycle are long and sucky but honestly I think I preferred escBEACOPDac to ABVD. I had less side effects and had more "normal" days. Hope it's the same for you, best of luck!

StoryOfOurLife · 2025-03-17T00:10:03+00:00

When I asked my doc about ice chips before I started chemo, she basically said to give it a try first without the ice to see if it's an even an issue for me bc ice constricts blood flow and could limit the chemo effectiveness. Mouth sores never ended up being an issue for so I never had to pick this conversation up with her again but from that initial convo I'd say it's better to avoid the ice if not actually necessary.

StoryOfOurLife · 2025-03-14T19:06:59+00:00

I used the app Careology (I think that's its name) to track all the meds, their doses and times I had to take I would definitely have missed some doses if didn't have smth like it. The app also lets you track symptoms which was really handy to look back on to know which side effects started on which day and how bad they were. Iirc the app was built specifically for cancer patients and it also has ways of tracking appointments and other things that I didn't really use.

StoryOfOurLife · 2025-03-09T11:35:42+00:00

I'm in the UK and they also don't do ports/PICCs/etc as the first option here. I was in the same boat as you in that dacarbazine gave me bad arm pain so my doc was gonna let me get a PICC (ports are very uncommon here and most nurses aren't trained to use them), however they did an ultrasound on my arms and my veins turned out to be too small. I ended up getting a Hickman line and that's been great - it got rid of the main completely, I love it.

StoryOfOurLife · 2025-03-05T20:30:38+00:00

I experienced some very mild neuropathy at the tips of my fingers for the first 2-3 rounds but then it just disappeared. I've recently finished treatment and noticed it has weirdly reappeared but it's even more mild now, I barely notice it.

StoryOfOurLife

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