Chemo starts 12th April

User

Posted 11 Apr 2023 at 22:14

First of six, three week chemotherapy cycles starts tomorrow.

Once a course of treatment was decided on things moved pretty quickly.

Oncologist 1, Oncologist 2 and assessment nurse all have a different take on what side effects are likely, whether to take time off work when immune system is low or how tiredness may effect me etc. This is not helpful!!

Anyway I should know for myself soon🙃

Any personal experiences would be read with interest... I do know that each person's experience is individual, but there might be common aspects.

Take care all.

Mike

User

Posted 12 Apr 2023 at 09:34

We seem to be on a similar pathway. I had two positive pelvic lymph nodes following from RP. The regime I'm on is ADT (3 years), 6 cycles of chemo (just finished), and 8 weeks full pelvic RT starting this week. They will also add a second line hormone drug which I think is darolutamide but not confirmed yet.

Some thoughts on the chemo....

Try to do something nice the last week before your next cycle. Could be a short holiday, visit to a nice restaurant etc...stuff you like. I found it helps to keep a positive frame of mind.

I did the cold cap and didn't lose any hair so it was worth it for me. The first 10 mins are uncomfortable and after that it's totally fine. I used to put on headphones and play AC/DC for the first 10 mins to distract myself.

Taste gets affected for about 7 days afterwards. I found chewing ice cubes helped marginally. As someone who enjoys food (don't we all) I didn't enjoy this part.

Fatigue gets worse as you go through it, but I was still able to work from home taking the odd nap in the afternoon. The first 5 days afterwards are the worst, particularly when the dexamethasone wears off.

They gave me lots of stuff to mitigate side effects. Pampoprazole for reflux, Mycostatin mouth drops, mouth rinses, Neulasta injection for the day after. I took all those and had no bad side effects and as you say everyone is different but hopefully you will be fine.

Best wishes with it all 🤞

User

Posted 12 Apr 2023 at 21:07

Jellies

Thank you very much, interesting info.

I've been given steroids for before and in between treatments. I've not been given any other medication but this is only the first session so time may tell. No cold hat for me... But I am bold anyway so no need for the ACDC!!

So far just tired and a headache will see how the next few days go. Planning to see if going in for short days works.

Planning something nice for the third week sounds good... Especially the going out for a meal if I can taste it?

Many thanks again.

Let me know how the RT goes if that's OK with you.

Mike

User

Posted 02 May 2023 at 02:40

Hi Mike, thanks for your good wishes and hope round 3 goes well. I just had my 5th today with another 5 planned. glad you are feeling a little better with things now.

I have been a little unlucky but we are of course fighting the Same battle to contain this disease and there are always people at different stages or with different levels of batter, it is a horrible wee disease. I do hope chemo and prostap do the business for you. I am hoping mine kicks in soon and if not there are some other options available to me.

Good luck to you Mike and keep updating here. It will be nice to hear how you are doing with things.

Best wishes

Michael

User

Posted 02 May 2023 at 22:27

Best of luck from me too, for the Chemo.

User

Posted 03 May 2023 at 20:05

Hi Mike

Replied on the other thread. Forgot about this one.

It's not too bad so far. My hospital is a 20 min drive so I leave at 9 with my bottle of water and drink it in the car. Then sit bursting for 15 mins before they take me in and the process itself takes about 5 mins. Next comes the highlight of my day where I get to joyfully relieve myself. Not much sex going on with ED and all the hormone drugs so I guess it's the next best thing 🙃

I was getting stomach cramps but have simplified my diet with seems to work. There is a regime called FODMAP for folks with IBS and I am roughly following that which seems to work. I'm working full time but by the end of the day I'm pretty whacked and just taking it easy. They say that I may need time off towards the end or for a week or two after but I'll wait and see.

Have also started new hormone drugs called Erleada (Apalutamide) but haven't really noticed any symptoms from them as I'm already on ADT injections.

So getting though it all bit by bit. Looking forward to getting it all done and hopefully getting the energy levels back up.

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User

Posted 12 Apr 2023 at 09:34

Some thoughts on the chemo....

Try to do something nice the last week before your next cycle. Could be a short holiday, visit to a nice restaurant etc...stuff you like. I found it helps to keep a positive frame of mind.

Taste gets affected for about 7 days afterwards. I found chewing ice cubes helped marginally. As someone who enjoys food (don't we all) I didn't enjoy this part.

Best wishes with it all 🤞

User

Posted 12 Apr 2023 at 21:07

Jellies

Thank you very much, interesting info.

So far just tired and a headache will see how the next few days go. Planning to see if going in for short days works.

Planning something nice for the third week sounds good... Especially the going out for a meal if I can taste it?

Many thanks again.

Let me know how the RT goes if that's OK with you.

Mike

User

Posted 12 Apr 2023 at 23:50

Sorry I can’t help with any information about the chemo. Just want to wish you the best of luck for starting treatment and hope it goes well with minimal side effects.
I do know a couple of people who have had chemo for prostate cancer, and although not lots of details they both said it wasn’t anything like they were expecting and didn’t have a lot of side effects. Best wishes

User

Posted 13 Apr 2023 at 04:42

Hi Mike, I Hope your first chemo went well. In terms of process I find it straight onward, I am on 4/10 at the moment. I have been up and down with side effects. What I would say is make sure that you accept that you are having chemo and and don’t try to do too much. Give yourself time to recover. The fatigue is, in my experience, cumulative. I hope you breeze through it, many do as far as I understand it. My progress so far is in my profile

The very best of luck and I really hope it does the trick for you on top of your other treatments.

Cheers

Michael

Edited by member 13 Apr 2023 at 04:43 | Reason: Grammar.

User

Posted 01 May 2023 at 21:45

Elaine

First of all apologies for not replying sooner.

First 2 weeks were not great - flu / hangover, bone pain, dry mouth and fatigue. 3rd week gradual improvement just in time for the next round on Wednesday 3rd May!! 🙃

But still... Not as bad as I had expected and able to work OK ish.

Many thanks for your kind words.

Take care

Mike

User

Posted 01 May 2023 at 22:09

Hi Michael

Sorry for late reply.

First 14 days after chemo not great... Third week better and next round of chemo is Wednesday 3rd May... 2 days time.

I read your profile. Puts things into perspective... I have little to moan about compared to your situation. I very much hope there can be some respite for you and your better half amongst all you are having to contend with.

My Gleason score is 8 but my PSA has never been that high. Mine has only travelled to pelvic lymph node... The hope is that prostap and docetaxel can contain it. That's the waiting game which we have become familiar with in all the tests and procedures.

Take care Michael.

All my best wishes.

Mike

User

Posted 02 May 2023 at 02:40

Hi Mike, thanks for your good wishes and hope round 3 goes well. I just had my 5th today with another 5 planned. glad you are feeling a little better with things now.

Good luck to you Mike and keep updating here. It will be nice to hear how you are doing with things.

Best wishes

Michael

User

Posted 02 May 2023 at 21:48

I will keep you posted Michael.

Best wishes

Mike

User

Posted 02 May 2023 at 21:51

Hi Jellies

Chemo 2 for me tomorrow.

How is your RT going?

Mike

User

Posted 02 May 2023 at 22:27

Best of luck from me too, for the Chemo.

User

Posted 03 May 2023 at 20:05

Hi Mike

Replied on the other thread. Forgot about this one.

Have also started new hormone drugs called Erleada (Apalutamide) but haven't really noticed any symptoms from them as I'm already on ADT injections.

So getting though it all bit by bit. Looking forward to getting it all done and hopefully getting the energy levels back up.

User

Posted 09 Jun 2023 at 23:42

Quick update... Round 4 on Wednesday

Jellies, Michael, Bob. Many thanks for best wishes and. Info.

Lyn, I did try the frozen pineapple. It was very nice, even if not certain it worked. Shared it with a couple of other people who also enjoyed.

My PSA is now 0.01 so that's as good as it gets. But my PSA has never been that high even though Gleason 8 and now locally advanced. My PSA was back within 6 months of my RP, so although an indicator it's not the only consideration.

I will have a scan and face to face with the consultant when chemo finished.

Does anyone know if moving onto the RT as originally planned is a given or might they say to wait. I would rather get it done ASAP.

Hoping that everyone is enjoying the sun.

Best wishes

Mike

User

Posted 11 Jun 2023 at 20:45

My PSA is just given as <0.03. Might be worth checking if yours is <01.

Yes, the standard treatment for pelvic lymph nodes is full pelvic radiation plus 3 years ADT. I’m assuming you’ve already started the ADT so that clock is already counting down. They started my RT 3 weeks after chemo ended and they told me that is the optimal time and it should not be delayed much more than that.

I finished my RT last Wednesday and already I am starting to get my energy back. The RT is a bit of a slog, but very doable and luckily I had no side effects apart from the usual loose bowels and fatigue. The machines I was on did not require any tattoos which is sometimes mentioned.

Good to hear you are getting through the chemo👍

Edited by member 11 Jun 2023 at 20:46 | Reason: Not specified

User

Posted 12 Jun 2023 at 22:23

Many thanks Jellies,

Yes, I started ADT 4 weeks before Chemotherapy.

So, RT 3 weeks after end of chemo... That's something to look forward to 🤣

Good to hear that your recovering your energy quickly. How many weeks / sessions of RT did you gave? Trying to think of late summer get away.

Take care, let me know how you are doing.

Mike

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