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Starting docetaxel chemotherapy

User
Posted 04 Mar 2024 at 15:01

Hi, 

I'm just about to start docetaxel (6 cycles). Does anyone have any experience with different vein options? Cannula vs port vs PICC line. Do the veins tolerate the chemo ok? 
I wasnt offered white blood cell injections (e.g. filgrastim) to boost my immunity. More a case of "if you need it, we will provide it". What are others experiences of this when taking docetaxel? 
Any advice on side effects is welcome too. 

Thanks in advance,
Mike

User
Posted 15 Mar 2024 at 10:39

Good luck Darren, 

It seems I'm approx. 10 days ahead of you in terms of chemo cycle. Here's a summary of my first 10 days, I hope it helps.

I was quite apprehensive before the actual day of first infusion, but the staff were excellent and talked me though everything before starting. 

On the day, the infusion (by cannula) passed with little incident, no pain. The only two things I noticed was

a. a little numbness in my arm extending +/- 3 inches from the cannula site. This started about 20 minutes after the docetaxel started. Nurse told me to flex my hand and fingers - this I did but the numbness remained until after the cannula was removed. Numbness disappeared completely 30 mins later. 
b. some numbness in the base of my left heel. Again this disappeared as soon as I was up and moving around again. 
Both could have been chemo or the way my arm was held and the way I was sitting ( i have lower back disc issues).

There's no bruising at the site of injection which seems to have healed ok. But because of the numbness, there was some talk of giving me a PICC line for the subsequent infusions. 

Post chemo infusion, I went for pub lunch, lasagne followed by chocolate brownie and ice cream. I got home and did a 2 mile walk in the afternoon (keep doing exercise they say). In hindsight that lunch may have been a bit rich. 
It's fair to say I was a bit hyper on the day of chemo and somewhat relieved it went so well.

Next day (chemo +1) I crashed with fatigue for 4 days. No energy, but able to get up and watch t.v; able to eat, but not much more. Days chemo +5 to +8 returned to work 1/2 day ( i work from home); daily walk of 1-1.5 miles for exercise. Day chemo +9, first time I have woken up feeling I have energy and clear head. 

Drug regime: HT and chemo:
3 months before chemo - nothing
2 months before chemo - lansoprazole & naproxen daily (for back pain - cancer in my spine)
3 weeks before chemo - Bicalutamide (for 28 days) - no obvious side effects
1 week before chemo - Decapeptyl injection  - no obvious side effects prior to chemo
Before chemo - 12, 3, 1 hrs: Dexamethasone - loads of energy and bounce on day of chemo
Chemo - docetaxel
Day of chemo - Darolutamide started (daily)
Day after chemo - Prednisalone started (daily)
Optional - Metoclopramide as required anti sickness medicine ( i was told to take this for  5 days x 3 a day but I decided there were so many new drugs in my system I would just take it if I felt sick; I took 4 over 5 days). 
Optional - co codamol pain relief as required instead of/as well as naproxen

7 days after chemo, I stopped needing/taking the painkillers.

Going from no drugs to the mix of above was something I struggled to get my head round. I'm a bit more accepting now. 
It's hard to separate the potential effects of HT (decapeptyl and darolutamide) from the chemo because they all started around the same time. 

Side effects:
Other than fatigue above, I had diarrhea (2x) on the day of chemo in the evening. However that afternoon I had taken a Vitamin B supplement as well.  I stopped taking the vit B supplement and the diarrhea has gone; was it the supplement or the mix of drugs, who knows. Other than that brief episode, I've had no constipation or diarrhea. [I was expecting to go one way or the other]. 

Chemo mouth: No ulcers or infections, but everything tastes different. Water tastes foul - I need to add a flavour. I don't take caffeine, but all my herbal teas taste off. I have no desire for coffee (decaff). I have to be deliberate about my fluid intake to make sure I get enough water. I like spicy food, but even a mild chilli tasted hot to me and made me a little nauseated. At plus 9 days I still have chemo mouth.

Appetite: reduced at first, but back to normal now. I've lost a kilo in weight. 

Sickness: The first week I would randomly feel slightly sick in my mouth or stomach, so took the anti sickness medicine when this happened. I never even got close to feeling sick to need to throw up. 

I've several friends who've recently gone through chemo for various cancers, prostate, bowel, breast, lymphoma. The overriding message I get is that every person responds differently. The biggest issue for me is the extent and length of post chemo fatigue. 

I hope this helps,
Mike

 

User
Posted 12 Apr 2024 at 08:26

Hi 

Completed my 5th cycle just over a week ago,like you my sweats are through the roof especially at night I'd say every 3hrs i sit on the side of the bed with a towel drying myself it's that bad,also the last 2 cycles I've picked up a cold which also knocks you back but you gotta keep going.

What about OJ Simpson?he passed with cancer,and you know which one it was???

Yes you guessed it right 

Stay strong everyone Phil 

User
Posted 17 Apr 2024 at 09:47

Good to hear how everyone’s getting on with their cycles.

I finished my 2nd cycle 10 days ago and had a bit of chemo mouth and general fatigue. I think the Dexamethasone is the thing that’s affected me the most- wired for three days whilst on that.

I developed a temp 37.8 last night and had been brewing a cold for about 10 days. Anyway now in the acute assessment unit having IV antibiotics! Wasn’t expecting this. There’s a suspicion of neutropenic sepsis so managing me for that. Hopefully will be home today then rest of the week off work to relax.

The nurses have said that at 10 days post chemo we’re particularly susceptible to infection. Think my kids gave me a cold. Hoping the chest X-ray is clear and the antibiotics do the trick. Fingers crossed! 

 

User
Posted 04 Mar 2024 at 15:01

Hi, 

I'm just about to start docetaxel (6 cycles). Does anyone have any experience with different vein options? Cannula vs port vs PICC line. Do the veins tolerate the chemo ok? 
I wasnt offered white blood cell injections (e.g. filgrastim) to boost my immunity. More a case of "if you need it, we will provide it". What are others experiences of this when taking docetaxel? 
Any advice on side effects is welcome too. 

Thanks in advance,
Mike

User
Posted 05 Mar 2024 at 08:46

Hi

I'm going to my 4th cycle of docetaxel next week by cannula and I've had no issues.am given course of steroids which is increased a day before the infusion which a suffer a bit of insomnia from the buzz but that peters off after the infusion I'm sent home with anti sickness tablets for about 3 days and self injections for 5 days for white blood cells,I suffer from constipation for a few days and taste buds go wild for about a week.

Hope this helps regards Phil 

User
Posted 05 Mar 2024 at 09:25

Hi Mike,

I can't help with your specific question. I've just reviewed your bio, and would like to say like to say, I'm so sorry that your disease has progressed so quickly. Very best of luck with your future treatment.

Edited by member 05 Mar 2024 at 11:38  | Reason: Additional text.

User
Posted 05 Mar 2024 at 10:33

Hi,

I have just had my 3rd IV of Docetaxel via cannula and other than lack of taste, appetite and fatigue in the first 6 days after treatment I have been coping ok and still working from home.  The sites of infusion have left dark bruising in the back of my hand and my forearm but the bruising from the first treatment has just started to fade in the last few days.  Each infusion is 3 weeks apart and I am due for my 4th one in 2 weeks time.   You have to stay on top of your fluid intake which is tough as even water tastes terrible!   Keep a bottle of lactulose close by and take some if you have not been to the toilet by the third day otherwise you will end up with severe constipation.   Tip for taste buds which seems to reduce the longevity of lack of taste is, ice pops, ice cream (if you can tolerate it) and sucking on frozen grapes including during the administration of the Docetaxel.

Hope this helps

Jay 

 

 

User
Posted 09 Mar 2024 at 00:09

Hi Mike,

I did the PICC line, was very easy and meant that they didn’t have to keep finding a vein each time. Also no need for them to keep jabbing for the bloods. I believe that the PICC is less risky for docetaxel overspill. Anyway, I did it.

It is an experience, the chemo, especially if you do the cold cap (it is doable - if you can get to 15 mins then you can do it). Above all, take a book and an iPod (well your choice of music/radio/entrrtaiment.)

Read my profile - I think I put a few updates about dosey chemo 😬).

All the very best

Spongebob

User
Posted 15 Mar 2024 at 08:17

Good luck Darren, you can do it, you’ll be fine. It’s mainly a battle against fatigue
All the best

Spongebob

User
Posted 15 Mar 2024 at 11:14

Hi Darren, 
I did the frozen pineapple trick during the chemo infusion, but it didnt really help me with chemo mouth. I've tried it since at home and it brings some temporary relief. But everyone is different. 
In total I took 4 or 5 anti sickness tablets during the first 7 days. That is compared to the prescribed amount which is 3 x a day for 5 days. So feeling nauseated was a minimal thing for me.

The chemo suite I as in, there were clearly some experienced patients in there who brought their own packed lunch, laptop to watch a movie, stuff to read etc, just to feel at home. 
Once I got over the nerves and realised it was going ok, I asked to stand up and move around by my seat as I cant sit still for too long. 

Good luck today,

M

User
Posted 16 Mar 2024 at 00:53

Darren, Darren,

Well done! But I’ve been there, the first night you think it’s a breeze. When it was me at this point I was pinging my mate telling him how easy it was and planning our next MTB in a couple days time. Little did I know!!!! You’ll get knocked out for 6 in the next 24hours. So, Just relax, go with the flow, and don’t be too ambitious (well I would get that Saturday night curry ordered, after all you are going through the mill, so why not?)

Wishing you all the best

Sponge

User
Posted 16 Mar 2024 at 09:29

Originally Posted by: Online Community Member

Darren, Darren,

Well done! But I’ve been there, the first night you think it’s a breeze. When it was me at this point I was pinging my mate telling him how easy it was and planning our next MTB in a couple days time. Little did I know!!!! You’ll get knocked out for 6 in the next 24hours. So, Just relax, go with the flow, and don’t be too ambitious (well I would get that Saturday night curry ordered, after all you are going through the mill, so why not?)

Wishing you all the best

Sponge

Saturday night curry sounds like a dream to be fair!! Yes I take your point definitely. The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression. About to take the kids to swimming lessons and aware being at the very start I hopefully am not to suppresses but still. Face mask? Hate them but maybe needs must. 

Also Center Parcs in a couple of weeks. Will see what can be done and just be careful I guess. Fam and friend and work colleagues who have colds knows to stay away, warn me, wear a mask etc.

Just want to crack on like none of this is happening, unless I can’t and have to crash for a while! 

It’s a strange journey!! 

User
Posted 16 Mar 2024 at 09:36

Originally Posted by: Online Community Member

Hi all

Been reading the thread and relate to all that's been said,had 4th chemo weds felt fine Thursday but crashed yesterday 12hrs in bed woke this morning with a little spring in me step it's gotta be the steroid crash that does me,I've made a note in the diary for next time round,had heated discussion with the wife yesterday,I just lost it,but I explained to her that I had poison pumped into me,topped up with steroids,I also had my prostap 3 injection Thursday and self injection Friday it does get on top of ya but come middle of next week I'll be virtually back to normal until round 5......ding ding.

Take care all....Phil 

Thanks Phil,

Listening to all of you a bit ahead of me in the chemo journey there does seem to be a bit of a them with the cumulative effects of the chemo in the later cycles. Makes sense I guess. I read about a 7-10 day Nadir point at which the chemical is most potent? 

I can relate to the relationship tensions. I suppose it’s hard on the other half having to be strong all the time. There will be wobbles and from threads I’ve read on here about relationships it seems so crucial for the family unit to try to balance and support  everyone’s emotions on this crackers journey. I talk about ‘reading the room’ and knowing when actually you or the wife might just need some time to themselves to decompress everything or equally a focussed convo or ‘state of the union’ as to where we’re both at with this all- a meeting of minds of you will. 

No doubt more updates to follow! Off to watch the kids at the pool!! Suns out as well! 

User
Posted 16 Mar 2024 at 16:41

Originally Posted by: Online Community Member
The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression.

If not already done so, invest in a decent thermometer - essential for anyone on chemo. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2024 at 18:17
A couple of things that stood out for me during my six cycles last year.

I was forever cold, even in August/September I was wrapped up in jumpers and a woolly hat.

The first week after every cycle wiped me out. Occasionally I would spend all day in bed.

Hair fell out after a fortnight, grew back pure white, then went curly, now back to shades of grey and straight.

Cycle four was when I started getting the runs, which lasted a while after the cycles finished (luckily I have a stoma bag which made it easy to manage).

Do the thermometer measurements regularly - I was really nerdy and kept a spreadsheet of them, and graphs of what was happening. The difference between my readings during cycle one and cycle six was astonishing! (see chapter 29 of my blog for the graphs!)

My blog covers my experience of it:

https://stewart124.wordpress.com/the-prostate-thing-28-let-the-chemo-begin/

https://stewart124.wordpress.com/the-prostate-thing-29-let-the-chemo-end/

User
Posted 31 Mar 2024 at 17:31

Hi Mike,

Yes, I was quite worried at first, not wanting to get it wet or even worse catching it on something. By the end I was much more nonchalant about it. Most of the time I was happy with using a bandage (ask them to give you some spares). I did buy a sleeve on Amazon (hope this link works >>>)https://www.amazon.co.uk/LimbO-PICC-Line-Sleeve-breathable/dp/B0999JXKNG?pd_rd_w=a2tFg&content-id=amzn1.sym.06ad6319-cbcd-4475-a88a-7dc2cf7747aa&pf_rd_p=06ad6319-cbcd-4475-a88a-7dc2cf7747aa&pf_rd_r=GFJVS9ZTZTYFGX9XGN10&pd_rd_wg=2dgfR&pd_rd_r=cb9c6831-3038-4fee-8116-4fedeac1fd57&psc=1&ref_=pd_bap_m_grid_rp_0_0_sa). 

And this worked quite well.

The other thing I found out at the end when I saw them remove it was just how secure the PICC attachment is. The purple gadget is really neatly securely attached to your skin, believe me it isn’t going anywhere even if it gets caught.

Keep getting out on that bike, all the best,

Spongebob.

User
Posted 17 Apr 2024 at 09:24

Hi parkie

Glad to hear your coping well with the chemo,I've got my 6th cycle next week followed the day after with an appointment with the chemist and a PSA reading result where I'll ask the question if docetaxel can be used again when the time comes,fingers crossed for us both.

Regards Phil 

User
Posted 23 Apr 2024 at 19:32

Great news Darren, glad it all ended well 😊

Show Most Thanked Posts
User
Posted 05 Mar 2024 at 08:46

Hi

I'm going to my 4th cycle of docetaxel next week by cannula and I've had no issues.am given course of steroids which is increased a day before the infusion which a suffer a bit of insomnia from the buzz but that peters off after the infusion I'm sent home with anti sickness tablets for about 3 days and self injections for 5 days for white blood cells,I suffer from constipation for a few days and taste buds go wild for about a week.

Hope this helps regards Phil 

User
Posted 05 Mar 2024 at 09:25

Hi Mike,

I can't help with your specific question. I've just reviewed your bio, and would like to say like to say, I'm so sorry that your disease has progressed so quickly. Very best of luck with your future treatment.

Edited by member 05 Mar 2024 at 11:38  | Reason: Additional text.

User
Posted 05 Mar 2024 at 10:33

Hi,

I have just had my 3rd IV of Docetaxel via cannula and other than lack of taste, appetite and fatigue in the first 6 days after treatment I have been coping ok and still working from home.  The sites of infusion have left dark bruising in the back of my hand and my forearm but the bruising from the first treatment has just started to fade in the last few days.  Each infusion is 3 weeks apart and I am due for my 4th one in 2 weeks time.   You have to stay on top of your fluid intake which is tough as even water tastes terrible!   Keep a bottle of lactulose close by and take some if you have not been to the toilet by the third day otherwise you will end up with severe constipation.   Tip for taste buds which seems to reduce the longevity of lack of taste is, ice pops, ice cream (if you can tolerate it) and sucking on frozen grapes including during the administration of the Docetaxel.

Hope this helps

Jay 

 

 

User
Posted 05 Mar 2024 at 11:32

A couple of tips I found useful during my 6 rounds of Docetaxel back in 2019 were:

-- suck ice cubes or frozen fruit cubes during the infusion, it really helps to stop the 'metal mouth' taste and helps to keep things tasting relatively normal

-- take a good vitamin B supplement that has all the B variants in it.  Docetaxel can cause peripheral neuropathy (tingling and loss of sensation in hands, fingers and feet) and the damage can be permanent.  A B supplement helps mitigate this, I certainly had no issues during my chemo.

It's interesting that the choice of filgrastil is up to you, I was just given it.  Apart from the unpleasantness of having to self-inject for a few days every cycle, and bone pain (which was sorted with loratadine, the over-the-counter antihistamine), I can't say what effect it had.  I didn't get really ill from the docetaxel, but equally I still felt like I'd had flu for a week after each cycle.

 

Edited by member 05 Mar 2024 at 11:36  | Reason: Not specified

User
Posted 05 Mar 2024 at 16:05

Thank you guys, I really appreciate your replies.

M

User
Posted 09 Mar 2024 at 00:09

Hi Mike,

I did the PICC line, was very easy and meant that they didn’t have to keep finding a vein each time. Also no need for them to keep jabbing for the bloods. I believe that the PICC is less risky for docetaxel overspill. Anyway, I did it.

It is an experience, the chemo, especially if you do the cold cap (it is doable - if you can get to 15 mins then you can do it). Above all, take a book and an iPod (well your choice of music/radio/entrrtaiment.)

Read my profile - I think I put a few updates about dosey chemo 😬).

All the very best

Spongebob

User
Posted 15 Mar 2024 at 00:02

Mike I’m so grateful to you for starting this thread. I start chemo tomorrow afternoon and have found the advice on here really helpful. From the sounds of it similar cycles to the rest of you 6x3 weekly cycles. 

The bit that’s keeping me awake tonight is the thought of putting those chemicals in my body when I feel so well in myself! Difficult to square but I guess being G9 with local spread I need to blast this thing with everything I can.

Anyway I wish all of you starting or mid chemo all the best with it. I’m not looking forward to it!!

User
Posted 15 Mar 2024 at 08:17

Good luck Darren, you can do it, you’ll be fine. It’s mainly a battle against fatigue
All the best

Spongebob

User
Posted 15 Mar 2024 at 10:39

Good luck Darren, 

It seems I'm approx. 10 days ahead of you in terms of chemo cycle. Here's a summary of my first 10 days, I hope it helps.

I was quite apprehensive before the actual day of first infusion, but the staff were excellent and talked me though everything before starting. 

On the day, the infusion (by cannula) passed with little incident, no pain. The only two things I noticed was

a. a little numbness in my arm extending +/- 3 inches from the cannula site. This started about 20 minutes after the docetaxel started. Nurse told me to flex my hand and fingers - this I did but the numbness remained until after the cannula was removed. Numbness disappeared completely 30 mins later. 
b. some numbness in the base of my left heel. Again this disappeared as soon as I was up and moving around again. 
Both could have been chemo or the way my arm was held and the way I was sitting ( i have lower back disc issues).

There's no bruising at the site of injection which seems to have healed ok. But because of the numbness, there was some talk of giving me a PICC line for the subsequent infusions. 

Post chemo infusion, I went for pub lunch, lasagne followed by chocolate brownie and ice cream. I got home and did a 2 mile walk in the afternoon (keep doing exercise they say). In hindsight that lunch may have been a bit rich. 
It's fair to say I was a bit hyper on the day of chemo and somewhat relieved it went so well.

Next day (chemo +1) I crashed with fatigue for 4 days. No energy, but able to get up and watch t.v; able to eat, but not much more. Days chemo +5 to +8 returned to work 1/2 day ( i work from home); daily walk of 1-1.5 miles for exercise. Day chemo +9, first time I have woken up feeling I have energy and clear head. 

Drug regime: HT and chemo:
3 months before chemo - nothing
2 months before chemo - lansoprazole & naproxen daily (for back pain - cancer in my spine)
3 weeks before chemo - Bicalutamide (for 28 days) - no obvious side effects
1 week before chemo - Decapeptyl injection  - no obvious side effects prior to chemo
Before chemo - 12, 3, 1 hrs: Dexamethasone - loads of energy and bounce on day of chemo
Chemo - docetaxel
Day of chemo - Darolutamide started (daily)
Day after chemo - Prednisalone started (daily)
Optional - Metoclopramide as required anti sickness medicine ( i was told to take this for  5 days x 3 a day but I decided there were so many new drugs in my system I would just take it if I felt sick; I took 4 over 5 days). 
Optional - co codamol pain relief as required instead of/as well as naproxen

7 days after chemo, I stopped needing/taking the painkillers.

Going from no drugs to the mix of above was something I struggled to get my head round. I'm a bit more accepting now. 
It's hard to separate the potential effects of HT (decapeptyl and darolutamide) from the chemo because they all started around the same time. 

Side effects:
Other than fatigue above, I had diarrhea (2x) on the day of chemo in the evening. However that afternoon I had taken a Vitamin B supplement as well.  I stopped taking the vit B supplement and the diarrhea has gone; was it the supplement or the mix of drugs, who knows. Other than that brief episode, I've had no constipation or diarrhea. [I was expecting to go one way or the other]. 

Chemo mouth: No ulcers or infections, but everything tastes different. Water tastes foul - I need to add a flavour. I don't take caffeine, but all my herbal teas taste off. I have no desire for coffee (decaff). I have to be deliberate about my fluid intake to make sure I get enough water. I like spicy food, but even a mild chilli tasted hot to me and made me a little nauseated. At plus 9 days I still have chemo mouth.

Appetite: reduced at first, but back to normal now. I've lost a kilo in weight. 

Sickness: The first week I would randomly feel slightly sick in my mouth or stomach, so took the anti sickness medicine when this happened. I never even got close to feeling sick to need to throw up. 

I've several friends who've recently gone through chemo for various cancers, prostate, bowel, breast, lymphoma. The overriding message I get is that every person responds differently. The biggest issue for me is the extent and length of post chemo fatigue. 

I hope this helps,
Mike

 

User
Posted 15 Mar 2024 at 10:56

Thanks Mike this is great advice. I start the first chemo in about 4 hours and good to know about your journey. I took Dexamethasone yesterday and I was up last night until 1 completely wired posting on here!! Took the second lot of tablets at 1pm so though I’d get to sleep ok.

Ive been for a run with the wife in case I can’t for the next few days. 

I’ve heard people on here mention sucking sweets or pineapples to help with the impending taste issues. Did you do eat anything during the infusion? Is it advised? Who knows! May bring some cucumber and humous, they’ll think I’m crazy!! 

I can see you’re on a lot of meds there. Have you had to take many of the anti sickness tablets? Have they helped? 

Thanks again 

User
Posted 15 Mar 2024 at 11:14

Hi Darren, 
I did the frozen pineapple trick during the chemo infusion, but it didnt really help me with chemo mouth. I've tried it since at home and it brings some temporary relief. But everyone is different. 
In total I took 4 or 5 anti sickness tablets during the first 7 days. That is compared to the prescribed amount which is 3 x a day for 5 days. So feeling nauseated was a minimal thing for me.

The chemo suite I as in, there were clearly some experienced patients in there who brought their own packed lunch, laptop to watch a movie, stuff to read etc, just to feel at home. 
Once I got over the nerves and realised it was going ok, I asked to stand up and move around by my seat as I cant sit still for too long. 

Good luck today,

M

User
Posted 15 Mar 2024 at 11:33

Great thanks for this. I’ll see how I get on with the sickness. As you say everyone responds so differently. 

Turns out one of the mums on the school run is one of the two chemo nurses and she’s sorted out my paperwork. May be on shift today so that will be good if she’s there.

Thanks again 

 

 

User
Posted 15 Mar 2024 at 20:41

Quick update. Finished the chemo at 6 tonight. Overall great experience. Lovely staff. Very slick and efficient. Few attempts at getting a vein in the back of the hand for the cannula but no problem really.


The room in the hospital looked like an airport lounge with about 20 chair recliners in it all facing a massive window overlooking country fields. Surreal!

Lots of much older patients there and some looking very poorly. Others quite chipper. Some patients had travelled 50 miles to get there which made me feel bad only coming a mile away. 

Came home had tea and spent an hour in my gym on the weights and now relaxing on the couch with a cup of tea.

Tomorrow may be a completely different story I know symptoms wise. I’ve been given a cocktail of meds- think I’ll need a pill box for all of them!

Thanks again for the advice on here. Really helpful having a heads up before going. Bring in session two in three weeks (and after Center Parcs with kids!)

User
Posted 16 Mar 2024 at 00:53

Darren, Darren,

Well done! But I’ve been there, the first night you think it’s a breeze. When it was me at this point I was pinging my mate telling him how easy it was and planning our next MTB in a couple days time. Little did I know!!!! You’ll get knocked out for 6 in the next 24hours. So, Just relax, go with the flow, and don’t be too ambitious (well I would get that Saturday night curry ordered, after all you are going through the mill, so why not?)

Wishing you all the best

Sponge

User
Posted 16 Mar 2024 at 08:23

Hi all

Been reading the thread and relate to all that's been said,had 4th chemo weds felt fine Thursday but crashed yesterday 12hrs in bed woke this morning with a little spring in me step it's gotta be the steroid crash that does me,I've made a note in the diary for next time round,had heated discussion with the wife yesterday,I just lost it,but I explained to her that I had poison pumped into me,topped up with steroids,I also had my prostap 3 injection Thursday and self injection Friday it does get on top of ya but come middle of next week I'll be virtually back to normal until round 5......ding ding.

Take care all....Phil 

User
Posted 16 Mar 2024 at 09:29

Originally Posted by: Online Community Member

Darren, Darren,

Well done! But I’ve been there, the first night you think it’s a breeze. When it was me at this point I was pinging my mate telling him how easy it was and planning our next MTB in a couple days time. Little did I know!!!! You’ll get knocked out for 6 in the next 24hours. So, Just relax, go with the flow, and don’t be too ambitious (well I would get that Saturday night curry ordered, after all you are going through the mill, so why not?)

Wishing you all the best

Sponge

Saturday night curry sounds like a dream to be fair!! Yes I take your point definitely. The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression. About to take the kids to swimming lessons and aware being at the very start I hopefully am not to suppresses but still. Face mask? Hate them but maybe needs must. 

Also Center Parcs in a couple of weeks. Will see what can be done and just be careful I guess. Fam and friend and work colleagues who have colds knows to stay away, warn me, wear a mask etc.

Just want to crack on like none of this is happening, unless I can’t and have to crash for a while! 

It’s a strange journey!! 

User
Posted 16 Mar 2024 at 09:36

Originally Posted by: Online Community Member

Hi all

Been reading the thread and relate to all that's been said,had 4th chemo weds felt fine Thursday but crashed yesterday 12hrs in bed woke this morning with a little spring in me step it's gotta be the steroid crash that does me,I've made a note in the diary for next time round,had heated discussion with the wife yesterday,I just lost it,but I explained to her that I had poison pumped into me,topped up with steroids,I also had my prostap 3 injection Thursday and self injection Friday it does get on top of ya but come middle of next week I'll be virtually back to normal until round 5......ding ding.

Take care all....Phil 

Thanks Phil,

Listening to all of you a bit ahead of me in the chemo journey there does seem to be a bit of a them with the cumulative effects of the chemo in the later cycles. Makes sense I guess. I read about a 7-10 day Nadir point at which the chemical is most potent? 

I can relate to the relationship tensions. I suppose it’s hard on the other half having to be strong all the time. There will be wobbles and from threads I’ve read on here about relationships it seems so crucial for the family unit to try to balance and support  everyone’s emotions on this crackers journey. I talk about ‘reading the room’ and knowing when actually you or the wife might just need some time to themselves to decompress everything or equally a focussed convo or ‘state of the union’ as to where we’re both at with this all- a meeting of minds of you will. 

No doubt more updates to follow! Off to watch the kids at the pool!! Suns out as well! 

User
Posted 16 Mar 2024 at 16:41

Originally Posted by: Online Community Member
The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression.

If not already done so, invest in a decent thermometer - essential for anyone on chemo. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Mar 2024 at 06:27

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression.

If not already done so, invest in a decent thermometer - essential for anyone on chemo. 

Thanks Lyn,

We’ve got a variety of thermometer including the infrared non contact forehead one, ear and digital one for under the arm or tongue all good makes.

Last night around 24hours after 1st chemo my temp dropped to 35.6. I was given the range of 36-37.5 by the nurses and told to ring the urgent assessment line if outside that. You get given non urgent and 24hr urgent direct numbers to the Oncology team after your chemo and a card to carry around warnibg if the risk of neutropenic sepsis and other nasties. I’d been outside for most of the afternoon trying (sometimes unsuccessfully) to assemble garden furniture and had had a load of steroids as well. It was sunny but I guess quite cold although I didn’t feel cold.

I think the steroids masked how low my temp got making me feel absolutely fine. Anyway, of all the thermometers the digital under the tongue one seemed the most accurate and we’ve just stored the rest of them away. 0.6 degree difference with the infra red one which when contemplating if you’re calling the urgent number makes a massive difference. We compared two Braun digi ones and they were only 1degree out of one another.

Whilst waiting for the nurse callback our curry arrived (after your tip SpongeBob we could resist)! Got an artificially inflated raise in temp after that spicy bad boy!! 

Nurses phoned my back within 30mins and asked if I had shortness of breath, shivers, agitation, hallucinations how my bowels and bladder were- all good. My temp came up to 59.9 after sitting with a blanket on with the log burner on watching Netflix (Netflix optional). They were happy with that.

Came up to 64 before bed and it’s now 64.2. Low given that 37 is the average but safe. 

Lesson to self I guess although I feel hugely resilient , I could become very unwell if I don’t help my body regulate its own temp even though I feel fine?! More layers and regular temp checking. 

The journey continues!! Roll on spring and summer. 

User
Posted 17 Mar 2024 at 06:38

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
The weirdest bit now is thinking about what the nurses really drove home about ‘protecting your environment’ with the immunosupression.

If not already done so, invest in a decent thermometer - essential for anyone on chemo. 

Thanks Lyn,

We’ve got a variety of thermometer including the infrared non contact forehead one, ear and digital one for under the arm or tongue all good makes.

Last night around 24hours after 1st chemo my temp dropped to 35.6. I was given the range of 36-37.5 by the nurses and told to ring the urgent assessment line if outside that. You get given non urgent and 24hr urgent direct numbers to the Oncology team after your chemo and a card to carry around warnibg if the risk of neutropenic sepsis and other nasties. I’d been outside for most of the afternoon trying (sometimes unsuccessfully) to assemble garden furniture and had had a load of steroids as well. It was sunny but I guess quite cold although I didn’t feel cold.

I think the steroids masked how low my temp got making me feel absolutely fine. Anyway, of all the thermometers the digital under the tongue one seemed the most accurate and we’ve just stored the rest of them away. 0.6 degree difference with the infra red one which when contemplating if you’re calling the urgent number makes a massive difference. We compared two Braun digi ones and they were only 1degree out of one another.

Whilst waiting for the nurse callback our curry arrived (after your tip SpongeBob we could resist)! Got an artificially inflated raise in temp after that spicy bad boy!! 

Nurses phoned my back within 30mins and asked if I had shortness of breath, shivers, agitation, hallucinations how my bowels and bladder were- all good. My temp came up to 59.9 after sitting with a blanket on with the log burner on watching Netflix (Netflix optional). They were happy with that.

Came up to 64 before bed and it’s now 64.2. Low given that 37 is the average but safe. 

Lesson to self I guess although I feel hugely resilient , I could become very unwell if I don’t help my body regulate its own temp even though I feel fine?! More layers and regular temp checking. 

The journey continues!! Roll on spring and summer. 

…sorry some errors on the temps there my temp came up to 36 before bed and then sits at 36.2 this morning. after sitting with blanket on came up to 35.9.

User
Posted 17 Mar 2024 at 18:17
A couple of things that stood out for me during my six cycles last year.

I was forever cold, even in August/September I was wrapped up in jumpers and a woolly hat.

The first week after every cycle wiped me out. Occasionally I would spend all day in bed.

Hair fell out after a fortnight, grew back pure white, then went curly, now back to shades of grey and straight.

Cycle four was when I started getting the runs, which lasted a while after the cycles finished (luckily I have a stoma bag which made it easy to manage).

Do the thermometer measurements regularly - I was really nerdy and kept a spreadsheet of them, and graphs of what was happening. The difference between my readings during cycle one and cycle six was astonishing! (see chapter 29 of my blog for the graphs!)

My blog covers my experience of it:

https://stewart124.wordpress.com/the-prostate-thing-28-let-the-chemo-begin/

https://stewart124.wordpress.com/the-prostate-thing-29-let-the-chemo-end/

User
Posted 18 Mar 2024 at 06:51

Thanks Stew,

That’s an incredible blog detailing your cancer journey. Thanks for sharing it. My digital thermometer now goes everywhere with me!! 

Fortunately my temp seems to have levelled out at 36.6 and other than an increase in hot flushes yesterday I managed to get out for a steady 5k run with no other major side effects at this point. 

Thanks again for sharing.

Edited by moderator 25 Mar 2024 at 09:08  | Reason: Not specified

User
Posted 27 Mar 2024 at 20:33

Chemo second cycle today. 
PICC line was fitted yesterday and chemo in thru that was without event. 
First cycle fatigue was the biggest issue; less than 50% normal activity levels. Hoping for a better outcome second time around. Other than chemo mouth, no other side effects of note. 

User
Posted 28 Mar 2024 at 08:08

Hi 

I have my 5th cycle next week,after my 4th cycle I decided to make a few notes of what side effects I have on what days and when they piter off and what activity I can and cannot do,I'll see if it helps.

User
Posted 31 Mar 2024 at 16:44

Originally Posted by: Online Community Member

Hi Mike,

I did the PICC line, was very easy and meant that they didn’t have to keep finding a vein each time. Also no need for them to keep jabbing for the bloods. I believe that the PICC is less risky for docetaxel overspill. Anyway, I did it.

It is an experience, the chemo, especially if you do the cold cap (it is doable - if you can get to 15 mins then you can do it). Above all, take a book and an iPod (well your choice of music/radio/entrrtaiment.)

Read my profile - I think I put a few updates about dosey chemo 😬).

All the very best

Spongebob

 

Hi Spongebob, 
Thanks for replying. I've got the PICC line in now. I see from your profile that you ride a bike. Did you ever use a particular PICC line arm sleeve to keep the protruding bits in place while riding or any other activities? I want to get back out on my mountain bike and go dancing, so looking for a suitable sleeve which will lock the PICC line attachment to my arm as securely as possible. 

Thanks, Mike

User
Posted 31 Mar 2024 at 17:31

Hi Mike,

Yes, I was quite worried at first, not wanting to get it wet or even worse catching it on something. By the end I was much more nonchalant about it. Most of the time I was happy with using a bandage (ask them to give you some spares). I did buy a sleeve on Amazon (hope this link works >>>)https://www.amazon.co.uk/LimbO-PICC-Line-Sleeve-breathable/dp/B0999JXKNG?pd_rd_w=a2tFg&content-id=amzn1.sym.06ad6319-cbcd-4475-a88a-7dc2cf7747aa&pf_rd_p=06ad6319-cbcd-4475-a88a-7dc2cf7747aa&pf_rd_r=GFJVS9ZTZTYFGX9XGN10&pd_rd_wg=2dgfR&pd_rd_r=cb9c6831-3038-4fee-8116-4fedeac1fd57&psc=1&ref_=pd_bap_m_grid_rp_0_0_sa). 

And this worked quite well.

The other thing I found out at the end when I saw them remove it was just how secure the PICC attachment is. The purple gadget is really neatly securely attached to your skin, believe me it isn’t going anywhere even if it gets caught.

Keep getting out on that bike, all the best,

Spongebob.

User
Posted 11 Apr 2024 at 20:39

Thanks Spongebob - I bought that PICC line cover from Amazon and it works well. Off out dancing shortly to really put it to the test. 

User
Posted 11 Apr 2024 at 20:48

Two weeks into second cycle of docetaxol. 
Side effects similar to first cycle: mainly fatigue and chemo mouth. But both are more manageable than during the first cycle. 
However, hot flushes have become more frequent and more intense. I'm also on darolutamide and decapeptyl injection, so its hard to isolate the precise cause of the hot flushes. 

One strange side effect when taking Laxido powder solution for slight constipation. Just took one of these a day for 4 days. Started to get a sharp pain in my right thigh muscle intermittently when going up and down stairs - like an internal needle stabbing the muscle - 3 or 4 on a scale of 10. Stopped taking the Laxido and the pain went away immediately. Anyone else ever experienced this? 

User
Posted 11 Apr 2024 at 21:44

No not on that, but I get joint pains increasingly now, almost certainly due to HT (in my opinion). I’m on Prostap and the hot sweats are now a regular pattern, in fact I’m having one now - not really an issue except overnight, when I get them every 1-2 hours waking me up each time 😴😱. I am permanently knackered b cause of disturbed sleep.

Good game this isn’t it.

Thrilled to bits that my advice on the PICC line sleave has come in handy 😬😬.

Spingebob

User
Posted 12 Apr 2024 at 08:26

Hi 

Completed my 5th cycle just over a week ago,like you my sweats are through the roof especially at night I'd say every 3hrs i sit on the side of the bed with a towel drying myself it's that bad,also the last 2 cycles I've picked up a cold which also knocks you back but you gotta keep going.

What about OJ Simpson?he passed with cancer,and you know which one it was???

Yes you guessed it right 

Stay strong everyone Phil 

User
Posted 16 Apr 2024 at 22:41

Hi There 

I have had three cycles of chemotherapy (Docetaxel). I am due for my fourth cycle of ten this Friday.

I started taking a log from the beginning of the treatment. Which has been handy. Looking back I can see there is pattern.

I have the treatment on a Friday.

Friday evening, Saturday and Sunday are usually ok. I usually take it easy over the treatment weekend. Then the following week, I can feel a little nauseous, and my mouth feels a bit clammy.

I haven't had to fall back on the anti sickness tablets really, just a couple of times.

When I get to the following weekend, things are better. Although the odd tasting, clammy mouth continues for a few more days. 

I usually just have some fruit pastilles handy and they seem to help.

My hair started to fall out on week two of the treatment. This stopped after a week and the rest of my hair has been ok so far. I have thinned out a bit but not too extremely. The nurses advised this may start again. We'll see.

Last cycle my neutrophil levels were down 1.38 on the pre chemotherapy blood test. This time they are 0.9. So I have to go back again in a couple of days for another blood test the day before treatment to see if they have gone up. Last time they had gone up to 4.46.

Overall it hasn't been as bad as I thought it would be. The nurses are great in the ward and I actually find the treatment quite relaxing. The ward is quiet with no visitors and I just get the headphones on and my book out. Not a bad two and a half hours 😊

 

 

User
Posted 17 Apr 2024 at 09:24

Hi parkie

Glad to hear your coping well with the chemo,I've got my 6th cycle next week followed the day after with an appointment with the chemist and a PSA reading result where I'll ask the question if docetaxel can be used again when the time comes,fingers crossed for us both.

Regards Phil 

User
Posted 17 Apr 2024 at 09:47

Good to hear how everyone’s getting on with their cycles.

I finished my 2nd cycle 10 days ago and had a bit of chemo mouth and general fatigue. I think the Dexamethasone is the thing that’s affected me the most- wired for three days whilst on that.

I developed a temp 37.8 last night and had been brewing a cold for about 10 days. Anyway now in the acute assessment unit having IV antibiotics! Wasn’t expecting this. There’s a suspicion of neutropenic sepsis so managing me for that. Hopefully will be home today then rest of the week off work to relax.

The nurses have said that at 10 days post chemo we’re particularly susceptible to infection. Think my kids gave me a cold. Hoping the chest X-ray is clear and the antibiotics do the trick. Fingers crossed! 

 

User
Posted 18 Apr 2024 at 22:31

It will be interesting to hear the feed back Phil. 😊

User
Posted 18 Apr 2024 at 22:33

That's not great new Darren. I do hope you improve soon. 😕

User
Posted 19 Apr 2024 at 15:33

All good thanks Parkie. Neutrophils came back north of 1 so they seem happy with that. Had 3 days of IV antibiotics and discharged with oral antibiotics.

Will be having GCSF injections for 5 days after my next 4 chemo cycles given my neutropenic episode.

Never been so glad to be back home! Onwards and upwards with this phase of the treatment journey!

On a side note I’m going to get allergy tested for Penicillin at my GP to see if that large family of antibiotics is actually ok for me and I just had a common side effect of a rash as a baby and was mislabelled as allergic. Gives more options in case of future infections.

User
Posted 23 Apr 2024 at 19:32

Great news Darren, glad it all ended well 😊

 
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