My Chemo journey

[Hazard]

I have just finished my chemo (docetaxal) treatment, I got through 9 infusions (out of ten scheduled infusions). Although I was tolerating it well enough my MO called time early because PSA was starting to rise again and saw no benefits in adding more toxins to my body if there was no PCa benefit. Overall I have got a good result. PSA dropped from 47 (pre-chemo) to 1.8 after 6 infusions. Unfortunately it has crept back up to 4.6 after 9th infusion. But even at 4.6, this is the lowest PSA reading since March 2017, so I am relatively happy.

There have been a few posts about chemo in recent times, and although I acknowledge that we all react differently I wanted to record my experience over the chemo journey - hopefully it may help someone on this forum.

How I Managed Chemo:

Diet. Good diet is essential. There has been a lot of debate about diet, antioxidants and ROS recently and I don't want to open that can of worms. But from my own experience I can say that a vegan diet

1. Made no difference to PSA double time

2. Made a huge improvement in cholesterol and tri-glceride levels and blood pressure. I believe that good metabolic health has been critical for me in dealing with chemo side effects (but it won't cure cancer)

Exercise. I have been going to the gym regularly and walking 8km on non-gym days. The central Melbourne train station is 3km from Peter Mac hospital so I would walk 3km to hospital before chemo, and 3 km back to station after chemo. After I got home I would take the the dog for a walk, another few kms. My best effort on chemo day was 12km and I didn't feel any adverse side effects.

Fasting. My sister-in-law (an oncologist) told me about this. There are mouse studies that show that fasting before chemo helps, if you are a mouse. The theory is that fasting puts normal cells into hibernation, but cancer cells can't hibernate, so when you veins are filled with docetaxal the hungry cancer cells will absorb more than their share - so, more cancer cells die and there is less toxicity on normal cells. Here is more info

news.usc.edu/103972/fasting...

Its good news, if you are a mouse. I fasted (water only) for 2 before chemo, day of chemo and day after chemo. So by breakfast on Day 5, that was 108 hours with no food. I found it surprisingly easy to deal with this. When you have sufficient motivation you CAN fast for 4 days. I did tell my MO about this and he said "you can try it if you want". Of course every time I went in for chemo the nurses asked "did you have a big breakfast" and I would just nod.

Side effects:

Fatigue, nausea. I never experienced either of these. They gave me some pills to take if I felt nauseous, I never needed them. I continued to play competition tennis and walk every day during my chemo journey with no noticeable impact. If you think that you will suffer fatigue - then you will. If you think that you can avoid fatigue by staying active - then you will avoid fatigue.

Bowel problems. Possibly because I was fasting and my bowels were empty, I didn't experience any issues.

Hair loss. I have lost my facial hair, what little head hair I had, and my body hair (although ADT was already diminishing that). But - so what? Do women look at me less? Who cares!!!! Strangely enough, the guys in my tennis team, who don't know that I am on chemo, don't seem to have noticed anything.

Fingers and toes. I have low grade peripheral neuropothy (numbness) in my toes, and very slightly in my fingertips. It is not causing me any problems so I ignore it. Vandy69 has posted that his MO told him to take Vit B6 to combat neuropothy. I am taking 200mg per day, and it has certainly helped, although not completely eliminated, neuropothy. I asked my MO about Vit B6, he just said "well it won't hurt...". Other people talk about icing fingers and toes during chemo infusion to combat neuropathy. I asked nursing staff at Peter Mac about about this and they just said "we don't do that here".

More of an issue are my nails. All my nails are getting loose. Big toe nails are ready to fall off, I think that tight fitting tennis shoes are making matters worse, and the nails on my ring fingers (both hands) are close to detaching. I need to tape these up every day to stop them catching on things. But this is an annoyance not a big issue. I am very happy for the PSA reduction and won't be sad if a few nails are lost along the way.

Weight gain. Since I never experienced nausea I never experienced lack of appetite or weight loss. On the contrary, prednisilone (10mg per day) made me really hungry. Despite fasting for 4 days in every 21 day cycle, I have managed to put on 8kg over 9 infusions (6months) of docetaxal. I am now weaning off prednisilone, and I need to get focussed and get rid of this weight.

So that's it for chemo. Hopefully this helps someone. I am now starting Xtandi, I have another check up in 4 weeks. MO said that if Xtandi is failing after 3 months then I can go on Lutetium 177 trial, so I have a nervous wait.

Keep fighting,

Hazard

[Schwah]

Thanks for taking the time to post all your tips. I agree with them all except I didn’t try the fasting but I did hear it helps. And the icing of fingers and toes during infusion kept me from having and issues there so I’d say try it.

Schwah

[Hazard in reply to Schwah]

Thanks Schwah. Can you describe the process you used for icing your fingers and toes?

[Schwah in reply to Hazard]

Actually as I write this I stand corrected. I did not ice my toes. Only my fingers. My MO’s office provided iced up gloves to put the tips of my fingers in during infusions. I suppose that’s because the nails are most often impacted. And they gave me ice chips to suck on during the chemo. I pulled my fingers in and out during the infusion so as not to get frozen. And sucked the ice on and off. Mostly off. They say mouth sores can develop and that helps. I’m a little vein with a full head of hair and didn’t want to look like a “cancer patient” so I also wore a frozen cap in my head that was changed every half hour or so and that continued for four hours after my infusions and I lost very little hair. There are conpanies online that sell them and if you pay extra a nurse comes and does all the work for you. But They say you could do it yourself or with a family member helping you for a lot less.

Schwah

[BartonKen]

I read your commentary with the sound of some familiarity to my own situation. Diagnosed February 2018 whilst on holiday in New Zealand PSA 500 Gleason 4 &9 The Hospital Surgeons suggested I consult with an Oncologist and a Urologist immediately, which I did. We reviewed getting an early flight to British Columbia, Canada and the BC length of time to get a GP and subsequent Specialist appointments, against how fast NZ health care would act on the diagnosis and the cost versus whether travel insurance would cover. We opted for immediate action in NZ and within 10 days I had Radiation on four lower vertebrae followed by ZOLADEX injection in the right lower stomach to keep the cancer cells from migrating out of the Prostate. The PSA dropped from 500 to 80 by the time we got an early flight home on March 27. It took 8 days to get to see my GP and another month to get ANZ Oncologists appointment and another 10 days after that to Getz CatScans and ultimately a Radiation treatment to the Pelivic for pain control. I’ve since had a Nucleid CatScan the findings being PSA down to 27 with cancer cells speckled from cranium to feet. Whilst not a vegan, my diet has been much as is suggested for Prostate cancer Mets patients for over 12 years. With radiation I was taking one before, day of and one day after, Dexamethasone which gave me a tingly throat and tongue, real hot flashes and some neuropathy in the soles and toes. Rolling my feet on an old rolling pin helped the neuropathy. I never had nausea or vomiting, even after chemo. I walk about 3 km a day, but get quite fatigued trying anything over that. The Oncologist suggests I do stretches daily and will have a CatScan next week to see if the vertebrae have grown back bone, one piece had the spinal cord exposed so I have to be careful what exercise I do. Four ribs were fractured in NZ and I need to see if and how much they healed. Hair loss; quite a bit from what was a full head of it, but not enough to make a profile difference.

Taking chemo and using ice. I read prior to me first chemo that ice on the hands and toes would alleviate nail loss. I asked for it and was given it on the hands, as they said as a matter of course. The nurse said trials of ice on feet have not shown to be of a conclusive help to date.

Weight and fasting. My weight has been steady between 79 kg and 84 kg, so no worries to date. Fastingive not tried. I’ll bask my Oncologist at the next consult.

Travel insurance? Five months after advising BCAA travel insurer TUGO I’m still waiting to hear if they are going to cover my Cdn $48,000 cost out of pocket!

[j-o-h-n]

TO Hazard. Thank you for your detailed report on your chemo journey. It's men like you who make a difference on this site. God Bless you and keep on fighting.

Good Luck and Good Health.

j-o-h-n Wednesday 07/11/2018 2:29 PM EDT