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Surviving Docetaxel Chemo

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User
Posted 01 Nov 2016 at 20:22

I've been doing my research into lots of the common side effects of Docetaxel. There are many that little if anything can be done to prevent them happening, e.g peripheral neuropathy. There are others where little if anything can be done to prevent them happening but they can be treated by medication, e.g feeling sick, muscle/joint pain. I'm not interested in them. They will be dealt with (or not) as they occur.

What I am interested in is how I can help myself to prevent some side effects. The table below shows my findings. I would be grateful for any suggested amendments or additions that you can offer. Many thanks in advance.

David

Side effect: Sense of taste impaired.

Mitigation: Frozen fresh pineapple cubes (12 to 16 largish chunks) to be sucked during Docetaxel infusions and for 20 minutes after. If this doesn’t work and taste is still impaired try sucking boiled sweets.

Side effect: Immune system impaired.

Mitigation: Good quality oral thermometer to keep an eye on temperature. Which days in the 21 day cycle is infection most likely? PCUK specialist nurse says days 7 to 12. Can one lead a fairly normal life outside of these times? Is it OK to continue to take 25 microgram Vitamin D supplements daily?

Side effect: Hair loss.

Mitigation: No cold cap for me. Number 4 haircut followed by donning my ColU FC beanie!

Side effect: Damage to nails.

Mitigation: Norwegian formula hand and nail cream or Aveeno body cream every morning and night. Are Aveeno soap and Aveeno body wash worth using? I’m going to seek further advise from my Podiatrist and will update here with anything useful.

Side effect: Sore mouth.

Mitigation: All the documentation I’ve seen says use a soft-bristled or child’s toothbrush. My dentist says use my normal medium brush because it is more effective at removing plaque and only switch to a softer brush if I encounter problems. PCUK specialist nurse says not to use medium since the risk of damage to the mouth outweighs the risk from plaque build up. She also advised using Corsodyl from the outset as a preventative measure. If mouth becomes sore maybe gargle DIFFLAM (benzydamine) twice a day. PCUK say brush the teeth gently twice a day; Macmillan say brush the teeth gently five times a day! Dentist says to continue to use Dental Floss and Tepees gently and to soften them by immersing in warm water if necessary. Should I rinse with salt water after brushing or does this wash the fluoride away?

Side effect: Dry lips.

Mitigation: Use lip balm.

Edited by member 09 Nov 2016 at 16:37  | Reason: Not specified

User
Posted 01 Nov 2016 at 22:35

To me the worst effect was the nails, toe nails coming off, and after over ten years my toes are still tender.


Chris.

Ps. Good list though.

User
Posted 03 Nov 2016 at 07:46

Hi David RE: sore mouth ,my OH was prescribed a mouth wash DIFFERLAM (benzydamine) that he gargled twice a day and it seemed to work .gary was very lucky and escaped nearly all side effects .minimal hair loss mainly on body ,thickly throat rather than sore .He worked right through in a manual job taking only 1 day off after round 6 (which I wasn't happy about ) but he said he had to focus on other things ,I'd have preferred a holiday !! ,
Tiredness came near the end session more .also some numbness in 1 toe and a few fingers that has now resolved 4 months on .lastly stay positive
Good luck
Debby

User
Posted 03 Nov 2016 at 21:55
Hi for nails and the skin around them I used Norwegian formula hand and nail cream, one tube lasted the whole 6 sessions. I put on every morning and night which kept nails under control, when I forgot for a day they started to crack and chip.

For sore mouth, I used corsidil twice a day, again made mouth ok but the days I forgot gums got sore.

One last thing, my tongue went black on days 2 to 6 of the first chemo session, I could not find anything g about this being a symptom but when I asked my onco he said it does sometimes happen. After day 6 never happened again but scared me when i first saw it.

Hope that helps

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 08 Nov 2016 at 17:46
Hi David,

I'm about to have my 6th and last cycle of Docetaxel. Along with the Docetaxel I've had steroids, too. I've found the side effects to be a lottery, and an ever changing one at that. I know we're all different and are likely to be affected differently, but thought each cycle would be very similar and, to an extent, they have been, but they're not the same.

To answer your list -

Side effect: Sense of taste impaired - nothing helped with my taste buds. I tried pineapple and sucking sweets but to no avail. I found Earl Grey tea and a few different herbal teas were bearable, as opposed to enjoyable, and helped cleanse my mouth of unpleasant tastes but regular tea tasted disgusting.

Side effect: Immune system impaired. Keep a good thermometer handy. I've stopped taking my usual Vitamin D and Pomi-T supplements since starting chemo as I didn't want to mess anything up.

Side effect: Hair loss. Mine started to fall out 10 days after having the first chemo. Bits have fallen out all the way through and there's been no growth for about two months. My facial hair fell out, too, but not my eyebrows and eyelashes, which are fine. I tried a number 3 haircut but finally went to a number 1.

Side effect: Damage to nails. I've been using Aveeno body cream wherever my skin has got dry or sore, including on my hands. While it's helped my skin my nails are discoloured and ridged, but they haven't yet dropped off. My toenails have started to hurt in the last week, so maybe they're now on their way, too. Aveeno was what my oncologist said to try. I found it so good I also bought Aveeno soap and Aveeno body wash.

Side effect: Sore mouth. I've used a soft hand held brush instead of my usual electric hard bristle since starting chemo. I rinse with salt water after brushing (I keep a bottle of salt water in the bathroom). I usually brush twice a day and think any more would make my mouth sore. In addition to the salt water I was told I could use any regular mouthwash that was alcohol free so I got some listerine. I've found I still need to dilute that half and half with water as it stings my mouth otherwise.

Side effect: Dry lips. I've not had dry lips. Maybe the Aveeno helped prevent that, I don't know.

You might get away with few or even no side effects, but if you don't make sure you get help. Don't underestimate the fatigue, if you get it. I thought fatigue from radiotherapy was bad but chemo fatigue is in a league of its own. The one side effect I hadn't bargained for is what chemo did to my head - I found it really brought me down mentally. If that happens to you, tell your medical team.

Good luck with the chemo!

Jim

User
Posted 01 Nov 2016 at 20:22

I've been doing my research into lots of the common side effects of Docetaxel. There are many that little if anything can be done to prevent them happening, e.g peripheral neuropathy. There are others where little if anything can be done to prevent them happening but they can be treated by medication, e.g feeling sick, muscle/joint pain. I'm not interested in them. They will be dealt with (or not) as they occur.

What I am interested in is how I can help myself to prevent some side effects. The table below shows my findings. I would be grateful for any suggested amendments or additions that you can offer. Many thanks in advance.

David

Side effect: Sense of taste impaired.

Mitigation: Frozen fresh pineapple cubes (12 to 16 largish chunks) to be sucked during Docetaxel infusions and for 20 minutes after. If this doesn’t work and taste is still impaired try sucking boiled sweets.

Side effect: Immune system impaired.

Mitigation: Good quality oral thermometer to keep an eye on temperature. Which days in the 21 day cycle is infection most likely? PCUK specialist nurse says days 7 to 12. Can one lead a fairly normal life outside of these times? Is it OK to continue to take 25 microgram Vitamin D supplements daily?

Side effect: Hair loss.

Mitigation: No cold cap for me. Number 4 haircut followed by donning my ColU FC beanie!

Side effect: Damage to nails.

Mitigation: Norwegian formula hand and nail cream or Aveeno body cream every morning and night. Are Aveeno soap and Aveeno body wash worth using? I’m going to seek further advise from my Podiatrist and will update here with anything useful.

Side effect: Sore mouth.

Mitigation: All the documentation I’ve seen says use a soft-bristled or child’s toothbrush. My dentist says use my normal medium brush because it is more effective at removing plaque and only switch to a softer brush if I encounter problems. PCUK specialist nurse says not to use medium since the risk of damage to the mouth outweighs the risk from plaque build up. She also advised using Corsodyl from the outset as a preventative measure. If mouth becomes sore maybe gargle DIFFLAM (benzydamine) twice a day. PCUK say brush the teeth gently twice a day; Macmillan say brush the teeth gently five times a day! Dentist says to continue to use Dental Floss and Tepees gently and to soften them by immersing in warm water if necessary. Should I rinse with salt water after brushing or does this wash the fluoride away?

Side effect: Dry lips.

Mitigation: Use lip balm.

Edited by member 09 Nov 2016 at 16:37  | Reason: Not specified

User
Posted 02 Nov 2016 at 08:56

Hi David,

Sounds like you are well prepared. I think I was lucky as didn't lose taste buds (red wine didn't change taste), A couple of thermometers in the house at least. Cold cap worked a treat for me ( I took it as was still working and didnt really want anyone to know - although it was obvious when people noticed no thick black eyebrows). Nails became ridged but almost back to normal now. No sore mouth.
The one missing is the tiredness. I thought I was getting away with it but as sessions went on, its amazing how and when the tiredness can come up on you. I just had cap naps as and when I needed it. even when working I'd have to pull over the car and nap for 15mins. Don't let it build up or it knocks you for six. Also hot flushes became more frequent and heavier.

Good luck with the chemo.

Steven

User
Posted 10 Nov 2016 at 16:13
Thank you for all that info Jim - really useful.

I hope you find the counselling and alternative therapies useful. Good to hear that your Macmillan nurse was in the ball and picked up on things.

I've just been reading your blog - it's brilliantly written.

Edited by member 10 Nov 2016 at 16:23  | Reason: Not specified

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User
Posted 01 Nov 2016 at 22:35

To me the worst effect was the nails, toe nails coming off, and after over ten years my toes are still tender.


Chris.

Ps. Good list though.

User
Posted 02 Nov 2016 at 08:56

Hi David,

Sounds like you are well prepared. I think I was lucky as didn't lose taste buds (red wine didn't change taste), A couple of thermometers in the house at least. Cold cap worked a treat for me ( I took it as was still working and didnt really want anyone to know - although it was obvious when people noticed no thick black eyebrows). Nails became ridged but almost back to normal now. No sore mouth.
The one missing is the tiredness. I thought I was getting away with it but as sessions went on, its amazing how and when the tiredness can come up on you. I just had cap naps as and when I needed it. even when working I'd have to pull over the car and nap for 15mins. Don't let it build up or it knocks you for six. Also hot flushes became more frequent and heavier.

Good luck with the chemo.

Steven

User
Posted 03 Nov 2016 at 07:46

Hi David RE: sore mouth ,my OH was prescribed a mouth wash DIFFERLAM (benzydamine) that he gargled twice a day and it seemed to work .gary was very lucky and escaped nearly all side effects .minimal hair loss mainly on body ,thickly throat rather than sore .He worked right through in a manual job taking only 1 day off after round 6 (which I wasn't happy about ) but he said he had to focus on other things ,I'd have preferred a holiday !! ,
Tiredness came near the end session more .also some numbness in 1 toe and a few fingers that has now resolved 4 months on .lastly stay positive
Good luck
Debby

User
Posted 03 Nov 2016 at 14:26

There's something I should have put in my post above - anything that anyone suggests that I add to my list of potential mitigations of side effects will be talked over with the Chemo doctors/nurses on my pre-chemo assessment on Monday 14 November. If they say, no don't do that, then I won't do it.

What that means for you is that I will never, ever, say "you said if I do so and so then I'd be OK". I take 100% responsibility for my actions.

User
Posted 03 Nov 2016 at 21:55
Hi for nails and the skin around them I used Norwegian formula hand and nail cream, one tube lasted the whole 6 sessions. I put on every morning and night which kept nails under control, when I forgot for a day they started to crack and chip.

For sore mouth, I used corsidil twice a day, again made mouth ok but the days I forgot gums got sore.

One last thing, my tongue went black on days 2 to 6 of the first chemo session, I could not find anything g about this being a symptom but when I asked my onco he said it does sometimes happen. After day 6 never happened again but scared me when i first saw it.

Hope that helps

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 08 Nov 2016 at 17:46
Hi David,

I'm about to have my 6th and last cycle of Docetaxel. Along with the Docetaxel I've had steroids, too. I've found the side effects to be a lottery, and an ever changing one at that. I know we're all different and are likely to be affected differently, but thought each cycle would be very similar and, to an extent, they have been, but they're not the same.

To answer your list -

Side effect: Sense of taste impaired - nothing helped with my taste buds. I tried pineapple and sucking sweets but to no avail. I found Earl Grey tea and a few different herbal teas were bearable, as opposed to enjoyable, and helped cleanse my mouth of unpleasant tastes but regular tea tasted disgusting.

Side effect: Immune system impaired. Keep a good thermometer handy. I've stopped taking my usual Vitamin D and Pomi-T supplements since starting chemo as I didn't want to mess anything up.

Side effect: Hair loss. Mine started to fall out 10 days after having the first chemo. Bits have fallen out all the way through and there's been no growth for about two months. My facial hair fell out, too, but not my eyebrows and eyelashes, which are fine. I tried a number 3 haircut but finally went to a number 1.

Side effect: Damage to nails. I've been using Aveeno body cream wherever my skin has got dry or sore, including on my hands. While it's helped my skin my nails are discoloured and ridged, but they haven't yet dropped off. My toenails have started to hurt in the last week, so maybe they're now on their way, too. Aveeno was what my oncologist said to try. I found it so good I also bought Aveeno soap and Aveeno body wash.

Side effect: Sore mouth. I've used a soft hand held brush instead of my usual electric hard bristle since starting chemo. I rinse with salt water after brushing (I keep a bottle of salt water in the bathroom). I usually brush twice a day and think any more would make my mouth sore. In addition to the salt water I was told I could use any regular mouthwash that was alcohol free so I got some listerine. I've found I still need to dilute that half and half with water as it stings my mouth otherwise.

Side effect: Dry lips. I've not had dry lips. Maybe the Aveeno helped prevent that, I don't know.

You might get away with few or even no side effects, but if you don't make sure you get help. Don't underestimate the fatigue, if you get it. I thought fatigue from radiotherapy was bad but chemo fatigue is in a league of its own. The one side effect I hadn't bargained for is what chemo did to my head - I found it really brought me down mentally. If that happens to you, tell your medical team.

Good luck with the chemo!

Jim

User
Posted 08 Nov 2016 at 19:46
Jim interesting that you have decided to stop taking the Pomi-T while having the chemo. I think my husband is going to do the same.

Have you done that for the whole period of chemo or just the couple of days around the treatment ?

Hope you get good results from it.

What did you do to cope with the mental health side effects ?

Edited by member 08 Nov 2016 at 19:49  | Reason: Not specified

User
Posted 10 Nov 2016 at 15:58
Hello Sallyyy,

I've stopped taking all my regular extras, including Pomi -T, for the entire time. I'd read that it might be OK to take it apart from the days just before and just after the chemo, but I didn't want to take any chances on stopping the chemo from being as effective as possible. Chemo is not pleasant, to say the least, so I didn't want to go through all the bad effects and then find out I'd messed it up.

As regards the effect chemo has had on me mentally I've probably not done as much as I should have. That's partly down to the mental effect itself, the feeling of just not wanting to bother. Everything is an effort, and not just physically. What I did do was write about it in my blog and my Macmillan nurse happened to read that one very deep and heavy post. As a result she asked if I wanted some counselling and some other complementary therapies and I said yes. As it happens I had my first counselling session today and I've got some complementary therapy coming up in about 10 days. I think that might be something like reiki. I tried that once before about 18 months ago and to my surprise found it very helpful as I'd gone into it as a sceptic. I wish I'd had some counselling pre-arranged as I could have done with it before.

Jim

User
Posted 10 Nov 2016 at 16:13
Thank you for all that info Jim - really useful.

I hope you find the counselling and alternative therapies useful. Good to hear that your Macmillan nurse was in the ball and picked up on things.

I've just been reading your blog - it's brilliantly written.

Edited by member 10 Nov 2016 at 16:23  | Reason: Not specified

User
Posted 11 Nov 2016 at 19:37

An update on damage to nails following an appointment with my Podiatrist today. Her opinion:

Nothing will stop damage to the nails from Chemo but using any type of moisturiser such as Norwegian formula hand and nail cream or Aveeno body cream will help to mitigate any damage through the process of massaging the cream into the skin at the nail base. This stimulates the blood supply and is good for the nail base.

 
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