Starting Chemo suggestions?

[Daddysdaughter]

My father will begin his Chemo next week at the City of Hope under the care of Dr. Dorff. I was looking for possible suggestions for the cooling caps and mittens as well as icing feet. I’m not sure what they offer but I am assuming I should have these ready. Also i wanted to do something creative, maybe like a care pack with photos or videos to help. My mom and i will go with him for the infusions but wanted to do something that will ease the nerves. for those of you out there that are trying to fight this evil beast and has been through cisplatin and docetaxel if you have encouraging words or ideas please pass it on! Thank you, wishing you all the strength to fight and win this battle.

[Hidden]

Did not need any of the items you mentioned above but of course chemo effects different people in difffernt ways. Fatigue, constipation and nasal congestion were my biggest nightmares. In Trying to be honest and prepare your dad for what is to come, it was the worse experience I have ever had in my life. Indeed, I could not even complete the full course due to the severity of the side effects. However, in saying this I met a number of people at the clinic who had very few or very mild side effects . Let’s hope your dad is in the latter category. Best of luck .

[Daddysdaughter in reply to Hidden]

Thank you, i also hope he has mild to no side effects..

[pakb]

My husband has had five docetaxel treatments so far. He’s had minimal side effects- everyone is so different! His skin is dry and he has watery eyes. Seems counterintuitive but drops help his eyes and he lotions up frequently. His lips are also very dry. Just this week his fingernails felt achy... we haven’t done the icing but I wish we had on the fingers. He’s a full vegan which I think has helped him not have constipation and he drinks tons of water. He has his iPad at treatments and we sometimes watch shows together or he plays card games. Good luck!

[pakb in reply to pakb]

I have a headphone splitter so we can both use headphones to watch shows 🙂

[Daddysdaughter in reply to pakb]

Good ideas, thank you. Wishing your hubby well!

[Stegosaurus37 in reply to pakb]

Careful on the hydration. You can easily over-hydrate and flush out needed electrolytes from your blood stream. That's why Gatorade became popular - electrolyte replacement. Since I am also an ice water fiend these days I've found a zero calorie electrolyte replacement drink. You don't need a lot and, depending on your water intake, you may not need any, but if your blood electrolytes get out of whack the fatigue can really hit you.

[pakb in reply to Stegosaurus37]

We def use an electrolyte drink. Found a low sugar one without artificial sweeteners. Great point!

[JamesAtlanta]

I was very nervous about it. In my case it turned out not to be at all as bad as I imagined. Sort of like getting mentally prepared to get a mild case of the flu 6-times. The side effects didn’t hit the day of treatment. Mine started a couple of days later and lasted about a week. Then fine for a couple of weeks. Then do it all over again. I was working full time, had my treatment on Wednesday, took the rest of the week off, and then back to work on Monday.

A few tips:

Put finger tips in ice during the infusion to reduce risk of neuropathy. And get gel pads for toes and balls of the feet

His skin will be very dry - use a moisturizer

Exercise to help with fatigue

If you have a shot of Neulasta the day after chemo, take Zyrtec - helps reduce bone aches

You will get a ‘swish and swallow’ prescription to treat thrush - a fungus you might get in the mouth due to chemo (no big deal to treat)

Brush teeth gently

If you are concerned about hair loss, you can use Polar Caps - they can be acquired on the internet. I used them and they work very well. Never lost a hair on my head (but lost everywhere else).

Best of luck - and please keep us posted. We are praying for you all!

James

[Daddysdaughter in reply to JamesAtlanta]

James thank you so much for all the helpful tips. I am so afraid for him.. but i can’t let fear get in the way at this point. Stay strong! Thank you!

[pakb in reply to JamesAtlanta]

Great tips! I did forget to say that- my husband definitely felt fatigued a few days after infusion for a couple of days. He feels better when he gets at least a few workouts in a week. I'm going to have him try ice on his fingertips next time!

[BigM62]

Talk with doc about B12 shots. I started finger tingles and eye twitches on round 5. Told my MO and now they give me weekly B12 shot - all gone. I never ice.

[pakb in reply to BigM62]

Interesting! Thanks post paying this!

[Daddysdaughter in reply to BigM62]

I was under the impression that b12 is bad for cancer and to avoid it.

[BigRich in reply to Daddysdaughter]

Unless I had anemia, I would not take a B 12 injection.

Rich

[Hidden]

1. audio books to listen to. What is he interested in...

2. I think the cool packs are a good idea, for hands and feet and head, even though some institutions discourage them.

3. Some chemo treatments use an anathestic. I would lean towards less, because of the "brain insult".

[Dan59]

I did basically the same as James, I used gel ice packs, the flexible kind used for back pain, On bottoms of feet, I put fingers in water ice solution. Elastogel mits for chemo and the polar caps are available online. For lack of anything else 2 dollar bags of frozen peas work too and can be reused. I do wish that I had used eye drops to rinse eyeballs, as by not doing that it still causes my eyes to be watery, not bad but little annoying.

Dan

[Roland632017 in reply to Dan59]

Hi Dan59

How are you?

I just woke up and do a urine test with Combur 10 (cobas). Urine still indicate haematuria but blood is clearly not visible and this is good.

I am still pain free and fatigue free.

My latest CT on 2 January 17 shows stable ( no further progression apart from undiagnosed haematuria ) PSA 26.43 (haematuria will have elevated result ) so I don't take it seriously. Other body functions OK and no infection.

After 5 days of intense medication I have stopped on 31 December 17 as I encountered haematuria.

Yesterday with blood not been clearly visible I have resumed my medication at a reduced rate. (haematuria is still present in my urine test)

Hope all goes well for me.

I still eat/feed liberally and even had sex on 4 January 18 do this is quality living and I don't know whether any one out there wants to trade places.

Roland

[Daddysdaughter in reply to Dan59]

Thank you Dan for all your help. I will look into the eye drops as well!

[taylor123]

Please look into fasting to use in conjunction with the chemo

[BillNIttles]

I had my 9 cycles in 2016. It was harsh, but deal withable. Two things that really helped me: pain killers/muscle relaxants for sleeping during treatment week- for me days 4,5 and 6, and salt. Chemo even made coffee taste bad, and for me, eating a little salt first made it and everything taste tolerable.

He should be ok.

Bilk

[Sisira]

Unlike in the past most of the patients today tolerate chemotherapy treatments without much difficulty. The tips given by JamesAtlanta are excellent for preparation. You may also add to it "sucking on small ice cubes during infusion" to avoid mouth sores.

My best wishes for successful results with the treatment!

Sisira

[blindsided]

I completed 6 rounds of Docetaxel in December 2016 with very few side effects (except now, a year later, my hair has grown back and I have a huge black afro - LOL - really!!).

I was taking Claritin for my allergies daily, high THC medical cannabis, drinking lots of water, and fasting 18 hours daily while on a ketogenic diet. Not sure if any of these made any difference, but I will certainly try them again if/when I need to have chemo again!

My thoughts are for a great response with chemo for your father, with few/no side effects!

- Greg

[Daddysdaughter in reply to blindsided]

Ketogenic diet can you elaborate on what you did?

[blindsided in reply to Daddysdaughter]

ketogenic diet for me was basically no sugar, starches i.e. carbohydrates which I limited to 40 grams a day, I ate mostly fats (good fats!) and just a little bit of protein (60-80 grams/day). I lost 35 pounds in a few months, had tons of energy, and my brain fired up (I got into microcoding electronics for fun!). I checked my ketones using a blood test and was always in ketosis with a reading of 2-4mmol. I also did not eat after 4pm or before 10am...it is a tough diet to follow, but I found that once adapted the food was delicious. The only issue that concerned me was the potential of increasing cholesterol and its possible effect on my mcrPCa...

[Daddysdaughter in reply to blindsided]

Was there any difference in chemo response for you?

[blindsided in reply to Daddysdaughter]

I experienced a little fatigue for a couple days after the chemo, I may have had neuropathy but couldn't tell since I was paralyzed originally from a tumor on my spine. I also lost all my hair - I had always wanted to see what I looked like bald - LOL. The hair has grown back thicker and extremely curly, so my wife helped me dye it black and now I have a black afro - I put on some dark glasses and nobody recognizes me! Now I can visit my competitors establishments incognito!

[vandy69]

Good Morning Daddysdaughter,

Will have chemo #6 ( Docetaxel/Carboplatin on 1/9 and have iced hands and feet each time. Please see my bio for treatment history.

Here is our regimen:

1. Cover hands and feet to prevent direct contact with ice. I bought some mittens with gel inserts and also foot booties with gel inserts on Amazon. After first use, learned that the small gel inserts warm up too fast. Now use the mittens and booties without inserts.

2. Use 4 plastic boxes that my wife used to keep shoes in as containers for hands and feet.

3. Bring a cooler full of ice and 4 freezer blocks that you use to keep drinks cold.

4. Set up is ice in containers, freezer block in each container, add water, insert hands and feet, and get very cold!

5. I have an Amazon Fire with 10inch screen, so I set up with a movie, put on headset, prop on lap with a pillow, and let the infusion fun begin.

Other assorted info: Med Onc suggested daily oral 100mg B6 to mitigate neuropathy. Also get injection of Aloxi before each infusion to mitigate nausea. Leave with On Body Injector of Neulasta to boost white blood cells. Med Onc recommended Claritin for 6 days beginning day before infusion to moderate bone pain from Neulasta. Always have oral Dexamethasone day before, day of, and day after infusion. Use Biotene products for any mouth soreness.

All in all, it is manageable. Major side effect is severe fatigue days 3-5 after infusion. Med Onc said biggest risk of infection from crowds is days 7-10.

Best wishes. Never Give In.

Mark, Atlanta

[Daddysdaughter]

Wow thank you for the details! So he literally inserted his hands and feet in ice water!

[Stegosaurus37]

Everybody's reactions are different and you won't know until you go through it. Sure hope you don't need all that ice - I didn't.

One thing - keep a daily log on how you are reacting with the side effects. I'm finding I've got different effects on different days on my second chemo than on my first. I'm very fortunate that I've not had any side effects beyond the fatigue and tastebuds.

I'm not a fan of additional supplements and I keep a close track of my prescribed pills (what's this for and is it something I still need) as I've found over the decades that my body is sometimes smarter than the docs are. Remember it's your body and your life - not the docs.

And attitude, attitude is everything. We're all here for you - keep smiling!

[Daddysdaughter in reply to Stegosaurus37]

Stegosaurus37 thank you!

[softwaremom00]

Here is what I would make sure to have on hand.. hopefully you won't need any of it.

Main List:

Anti-Nausea Medication - ask for this from Doctor. There is even one that dissolves in your mouth if too sick to swallow.

Anti-Diarhea Medication(Over the Counter )

Good Probiotic supplement. I am sure there are many but the only one that I know for sure is good is from sanjevani.net - sanjevanistore.com/collecti...

Hydrating Fluids on Hand.. Gatorade, coconut water.. etc

BRAT Diet ingredients.. Bananas, Rice, Applesauce, Toast.(I would add in Saltine Crackers..they keep a long time) Hopefully you won't need them but just it case. This is supposed to be good for bad nausea and diarrhea.

Claritin - if he is getting the Neulasta. The Claritin helps with the pain.

Notebook - Keep track of symptoms and problems.. Your oncologist can give you all kinds of good medications to help with chemo problems.. so Document them.

RealBuild - Only if they are NOT giving Neulasta or any drug for white blood cells. It does not work as well as Neulasta for White Blood Cells but it helps.

Funny Movies/TV Shows - we watched a lot of TV during this time and I think it helped that it made my husband laugh and smile!

Extras to try:

Really good Aloe Vera gel to drink and help bring back gut health.. aloe1.com is excellent.

Kombucha - good probiotic to add. You can make your own or buy it. Sprouts has tons of yummy kombucha.

Ginseng - it is supposed to help with the fatigue.

Kefir - if you eat dairy please consider making milk kefir. It is by far the best probiotic supplement. It is super easy to make. You only need to buy the grains once and they last for a long time. Great place for grains, great return policy... not dead cultures! - kombuchakamp.com( I bought a lot of dead cultures before I found Kombucha Kamp)

beta glucan - We used 2 types of beta glucan.. Transfer Point and Oriveda Turkey Tail.. I believe this helped keep my husband from getting sick during 2 chemo treatments.(6 cycles in one and 5 cycles in the other) Most folks probably only use 1 type but I really love the Transfer Point product and the Oriveda is a mushroom supplement so it is more of a whole food supplement.

I know it is a long list. You've got this. I think eating healthy during chemo really helps. Lots of homemade soups are terrific. They are healthy and comforting as well.

TONS of hugs and prayers!

Softwaremom00

P.S. Our new oncologist was a ND- Naturapathic Doctor before becoming an MD.. and he is very supportive of the Probiotic, ALOE and Beta Glucan. He went over all of my supplements with me.

[Daddysdaughter in reply to softwaremom00]

Sofwaremom, this is amazing information THANK YOU!! I will get all these items for my dad!! This site has so many people that take the time to help others going through similar situations. ❤️

[Ian2017]

I had my first infusion of docetaxel on Friday. Infusion took about 2.5 hours and I slept through it all. No ice caps, no sucking on ice. So far, no serious side effects, no nausea, even fatigue not an issue. Mouth feels a bit 'metallic' at times. Very good appetite and I continue my high fruits and vegetables and cereals and low sugar and low salt diet (though nothing extreme). Drinking water whenever I can. I also swear by a daily glass of unfiltered, no preservative, pure pomegranate juice. And weak, black Rooibos tea, both for their exceptionally high anti oxidant qualities. I work out in the pool almost every day. It was hard getting to sleep on the first night despite feeling very tired. I'm told this is not uncommon. I'm also told that my hair will start dropping out around day 10. Most vulnerable period in terms of weakened immune-system is apparently during the second half of the gap between infusions (days 10 to 21). I'm due 5 more infusions, once every 3 weeks. Wish you luck and looking forward to sharing experiences here.