Mitigating chemo side effects - Advanced Prostate...

Advanced Prostate Cancer

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Mitigating chemo side effects

Rexwaterbury profile image
39 Replies

I start chemo with docetaxil and carboplatin on Tuesday. Would appreciate any advice as to how to lessen any side effects such as hair loss and peripheral neuropathy and nausea/vomiting.

Thanks in advance.

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Rexwaterbury profile image
Rexwaterbury
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39 Replies
FCoffey profile image
FCoffey

Many clinics already do this: make sure you get an ice hat, ice gloves, and ice boots during the infusion. Chilling those extremities reduces circulation and lowers the amount of hair loss and peripheral neuropathy. As a side effect, it puts more of the chemo where it can do some good.

There are many books discussing supplements that can reduce the side effects of chemo, but time is short.

Rexwaterbury profile image
Rexwaterbury in reply to FCoffey

Where does one obtain the ice hat, Ice gloves, and ice boots.?

FCoffey profile image
FCoffey in reply to Rexwaterbury

The clinic should have them. If they don't, refuse the treatment and find a clinic that has joined the 21st century.

These two are FDA approved

dignicap.com/

paxmanscalpcooling.com/the-...

TNCanuck profile image
TNCanuck in reply to FCoffey

Most clinics are not equipped for cooling. There are entire states that have no such facilities, including some of the top-ranked cancer centers.

FCoffey profile image
FCoffey in reply to TNCanuck

So most clinics don't care if patients lose their hair, get permanent nerve damage, and spend the rest of their life puking into a garbage can. Big name or not, perhaps better to find a clinic that does care about QOL and not just revenues. The small community clinic near me has the latest machines, and had been using cold therapy during chemo for years.

Rexwaterbury profile image
Rexwaterbury in reply to FCoffey

FYI. Columbia hospital in New York where I am receiving my chemotherapy has cold caps for their patients. Many places do not. And it is not inexpensive. $450 per session.

Rex

TNCanuck profile image
TNCanuck in reply to FCoffey

Vanderbilt's cancer center doesn't offer cold therapy anymore because it became too much for the nursing staff to handle caps AND infusion treatments, taking away from the staff's primary purpose. We happily accepted the top-notch care from the nurses and provided our own cooling therapy.

Rexwaterbury profile image
Rexwaterbury in reply to TNCanuck

At Columbia, a representative from MyDignicaps is present to administer the cold cap Therapy, not the infusion nurses

CantChoose profile image
CantChoose in reply to Rexwaterbury

We were told at Northwestern that they will support it if we bring it, but they don't believe it makes a difference.

FCoffey profile image
FCoffey in reply to CantChoose

It doesn't matter what they believe. What matters is what you believe.

TNCanuck profile image
TNCanuck in reply to Rexwaterbury

That's fantastic!

FCoffey profile image
FCoffey in reply to TNCanuck

Poor babies. God forbid that helping patients live with the consequences of their treatment get in the way of revenue.

HOPEFULSPOUSE profile image
HOPEFULSPOUSE

My husband’s MO has him on a complete vitamin e and b6 to prevent neuropathy - so far he has had none - 6 months in.

He hasn’t had hair loss but has had a lot of nausea.

His nausea can be prevented as long as he takes the zofran regularly - ie BEFORE he has any nausea - so for him it seems to be a preventive to take it every 6 hours. Prior to the chemo his DR gives him some kind of long acting nausea med in the IV - the chemo is on Fridays and the med lasts until Monday evening. He also has a perchlorperazine 12-hour suppository that he can use which is a bit stronger. Comes in handy if the nausea does set in and he can’t keep anything down.

Rexwaterbury profile image
Rexwaterbury in reply to HOPEFULSPOUSE

What is the dose of vitamin E and vitamin B6 that he takes?

HOPEFULSPOUSE profile image
HOPEFULSPOUSE in reply to Rexwaterbury

He takes 400 twice a day of vitamin e - full spectrum mixed tocopherols & tocotrienols. The prices for the full spectrum are more or less the same for all brands but at the moment he is using Life Extension's Gamma E product.

For B6 - in the beginning his MO had him taking 50 mg twice a day but after testing his levels after the first month reduced it to once a day. He uses the P5P form which is more bioavailable.

Magnus1964 profile image
Magnus1964

Here is a list of drugs and supplements I take for neuropathy.

1. Mirapex 1 tablet 0.25mg - prescription

2. Gabapentin 2 capsules (300mg) - prescription

3. Acetyl L-Carnitine 1 capsule 500mg - over the counter

4. Leg Cramps (by Hylands) 2 tablets over the counter

5. Aleve PM 2 220mg - over the counter. Because Aleve can cause liver damage with long term use I have substituted Zyflamend 1 capsule.

tom67inMA profile image
tom67inMA

Get outside and run/walk/crawl, whatever your body will allow on a given day. Or lift weights if that's your thing. Getting your body fluids flowing is thought to help more of the chemo get deeper inside difficult to reach tumors. It will improve your mood and help fight fatigue.

To put it another way, if you weren't having chemo and you plopped yourself on the couch for 18 weeks, your body would deteriorate and you'd become weak and have no stamina. Exercising during chemo won't be a picnic, but it does help.

TNCanuck profile image
TNCanuck in reply to tom67inMA

Agreed. My husband walked a minimum of 10k steps every day and believes it helped tremendously.

Schwah profile image
Schwah

Great advise here. I used a company called Cold Caps. It’s dry ice change every thirty minutes in a cap on your head. It actually worked. I lost very little hair. It’s supposedly about 85% affective. Kinda a pain cause you need to do it during the infusion and a few hours after. You really need someone to help you. Not really painful but a little cold. I did not want the cancer looks from people. Phone # below.

Schwah.

‭(310) 570-2177‬ Soloman cold caps

vandy69 profile image
vandy69

I have had 12 infusions with Docetaxel/Carboplatin combo.

Hints:

1. Began each infusion with infusion of Aloxi to prevent nausea.

2. Kept hands and feet in ice water to mitigate neuropathy.

3. Took 100mg of B6 to reduce chance of neuropathy.

4. Left each infusion with an On Body Injector of Neulasta to boost white blood cells.

5. Used Biotene products for mouth care.

6. Took Wisconsin American ginseng to moderate fatigue (google Mayo Clinic for their trial).

Best wishes. Never Give In.

Mark, Atlanta

DrWrite profile image
DrWrite

As you probably know already, there are a wide-ranging number of side-effects and not a lot of predictability as what ones you will experience. My first round produced a huge amount of sweating to where I now bring dry clothes with me for each round. But that was the only time I needed them.

Each round brought its own side-effects for which I was often unprepared. Also, I couldn't predict when they would pop up--the next day, two days later, a week later?? I consider myself fortunate, though, as I was usually able to cope with whatever came up.

Yesterday I completed Round Five of Six, so I'm looking forward to concluding the chemo and awaiting results (in four to six weeks).

Feel free to write directly to me [drwrite@drwrite.com] with specific questions or concerns. We're in this together and as I like to refer to my Oncologist...you good man; you my Chemo Savvy. :-)

monte1111 profile image
monte1111 in reply to DrWrite

Chemo savvy....that is just great. Inspired my worthless soul to google Tonto jokes. Quite a bit out there. Thanks for another entry into my Dicktionary.

j-o-h-n profile image
j-o-h-n in reply to monte1111

You LoanArranger? Me 4closure

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/30/2019 11:35 PM DST

larry_dammit profile image
larry_dammit

Go ahead and get the hair cut short, eat what you can, get the anti nausea pills and take them even if you don’t feel sick at the time and lots of naps. 😀😀😀

Alvin735 profile image
Alvin735

I just ordered this from Amazon. Probably a bit late as well, as I've done one infusion and won't get it before I have my second. Are you still taking it? How much do you take, or will it say on the bottle? Thanks

Alvin735 profile image
Alvin735

Thanks!

TNCanuck profile image
TNCanuck

Rex, if you'll search "side effects Taxotere" you should find a post from me that provides extensive guidance on avoiding side effects. Best wishes as you begin your treatment.

TNCanuck profile image
TNCanuck

Where are you located, Rex? I'd be happy to help you find a facility that offers cooling caps or a distributor of them.

Rexwaterbury profile image
Rexwaterbury in reply to TNCanuck

Thanks so much for all the useful information. I live in Virginia Beach, Virginia.

TNCanuck profile image
TNCanuck in reply to Rexwaterbury

Here are the centers in VA that have on-site cooling equipment and freezers:

Virginia

Virginia Cancer Specialists Alexandria – Alexandria, VA PAXMAN

Virginia Cancer Specialists Arlington – Arlington, VA PAXMAN

Inova Fairfax Hospital Woodburn Infusion Center – Annandale, VA FREEZER

UVA Medical Center - Emily Couric Clinical Cancer Center – Charlottesville, VA DIGNICAP

UVA Medical Center - Cancer Center Pantops – Charlottesville, VA DIGNICAP (Fall 2018)

Inova Fairfax Hospital Prosperity Infusion Center – Fairfax, VA FREEZER

Inova Fairfax Hospital West Infusion Center – Fairfax, VA DIGNICAP (Fall 2018) AND 2 FREEZERS

Virginia Cancer Specialists – Fairfax, VA PAXMAN and FREEZER

Inova Schar Cancer Institute – Falls Church, VA 2 FREEZERS (March 2019)

Virginia Cancer Specialists Gainesville – Gainesville, VA PAXMAN

Virginia Cancer Specialists Leesburg/Loudoun – Leesburg, VA PAXMAN

Centra, Allen B. Pearson Regional Cancer Center – Lynchburg, VA DIGNICAP

Virginia Cancer Specialists Reston – Reston, VA PAXMAN

Virginia Cancer Specialists Woodbridge – Woodbridge, VA PAXMAN

Rexwaterbury profile image
Rexwaterbury in reply to TNCanuck

None of the above is located near Norfolk-Virginia beach. Are there any other centers that provide services in my area? If not, should I make arrangements with Penguin or Polar Arctic caps?

Thanks so much

Rex

TNCanuck profile image
TNCanuck in reply to Rexwaterbury

I was afraid of that. The centers offering it aren't that numerous. We used Arctic Cold Caps and I would recommend them, since my husband had virtually no hair loss. Here's their website: arcticcoldcaps.com/faq/

The oncologist here gave us the name of a local lady who rents out the caps and related equipment. You might call some cancer centers and try to find a local distributor. If not, you can order the complete kit. You WILL need someone there to change out the caps and keep things cold. The lady here provides that service too, but she assured me I could do it myself after she walked me through the cooling and cap change process a couple of times.

TNCanuck profile image
TNCanuck in reply to Rexwaterbury

Some additional tips on using the caps:

1. Use only cool water in shower

2. Wash hair gently

3. Use a gentle shampoo with pH similar to that of the hair in the 4.5 to 5.5 range. Use clear shampoos, not "milky" or "creamy" ones. Shampoos should have no sulfates. Googling shampoos with 4.5 - 5.5 pH will help you find products that are appropriate.*

4. Do NOT use products that say volumizing, or that are opaque (rather than clear). Such products may coat the hair and keep oxygen from reaching the hair follicles

5. Use a detangling spray such as Kenra® Classic Daily Provision** (spray-on conditioner) rather than a regular conditioner. Again this helps keep the hair follicles from being coated

6. Make the transition to these new hair care products as soon as possible before chemo starts, as it may take 2 weeks or more to fully clean old product residue off the hair

7. Coloring hair is not recommended until 3 months after chemo is finished, because the follicles still need time to recover from the trauma of chemo

8. Keep hair straight down during chemo; do not bunch or pile on top of your head

9. Don’t pull on the roots

10. Hold hair when combing so not to strain the roots. Paxman recommends Tangle Teezer, the original detangling hairbrush, easily found online

11. Sleep on a satin pillow case

12. Do not use curling irons, electric rollers, or hot air hair dryers

13. DRINK AS MUCH WATER AS POSSIBLE DURING CHEMO DAY

14. Use adhesive-backed moleskin***, cut to the shape of the forehead, to protect skin when cold caps are on. If your hair doesn't cover your ears, use foam headphone covers to protect your ears

15. Have warm blankets, an electric blanket, or heating pads on hand to use, especially during and right after each cap change

16. Sit in a chair without a high back – otherwise working at the back of the head during cap changes is difficult

17. Use a travel-type neck pillow to support your head/neck during chemo

18. Find out if you can have lab work done the day before chemo, because this shortens chemo day waiting time considerably

19. Find out if you can call in and request to have your chemo order sent up from the pharmacy before you leave home the morning of chemo – saving you up to an hour

20. Be sure to change the hair part line with each session of chemo. It helps to protect the scalp

21. Lucinda Ellery is a company that has a unique program for those with thinning hair (and even no hair). Read more at lucindaellery-hairloss.com/...

22. If you are looking for help camouflaging thinning hair, once all chemo treatments are finished, consider Nanogen Keratin Hair Fibers, which can be viewed here.

*Sojourn’s line of hair care products has a pH of 4.5 - 5.5. They recommend their Color Preserve or Moisture Shampoo.

**Click here to find a location in your area that carries Kenra Professional hair care products.

***Moleskin Plus is a Dr. Scholl’s product that can be found in any drug store. Purchase the padding roll so you can cut it to the size needed for your forehead

TNCanuck profile image
TNCanuck in reply to Rexwaterbury

There is a wealth of information on this site as well:

rapunzelproject.org/ColdCap...

If you need any other info, I'll be glad to help! Being able to keep his hair made a huge difference in my husband's outlook. He's always been known for his black, thick, spiky hair and he didn't want to lose his "trademark". :)

Rexwaterbury profile image
Rexwaterbury in reply to TNCanuck

Once again, thank you so much.

TNCanuck profile image
TNCanuck

Here's the information I referenced previously regarding avoiding side effects. It's long but worth the read, IMO!

This following post was originally made by a gentleman on another, similar site. I have not vetted the facts of the post, but can tell you that following the advice regarding minimizing side effects worked very well for my husband. Regarding hair loss, my husband chose to use cooling caps and did not experience any hair loss. As for working while on Taxotere my husband worked full-time, taking off half a day or less for the infusion appointment. He also walked a minimum of 10k steps EVERY DAY throughout the treatment. PRAYERS for great results for all who are treated with Taxotere!

_____________________________________________________________

TAXOTERE was first approved for the F.D.A. for use in the treatment of prostate cancer in the year 2004. Researchers spent YEARS finding chemotherapy compounds that could attack prostate cancer cells. At that time, TAXOTERE was typically used for advanced prostate cancer, after all other treatments had failed. It was once considered a "Hail Mary" pass in the last quarter of the football game, so to speak --- but certainly a tremendous STEP FORWARD in treatment options !

Things have CHANGED since then, my friends --- new breakthrough medications, used in combination with TAXOTERE, have created an entirely new landscape in the treatment of advanced prostate cancer and TAXOTERE has shifted to an upfront treatment option, rather than a "last shot" treatment option. It has now moved its way to the "front of the line" --- which means that now some fellows get started on a chemotherapy regimen almost immediately upon diagnosis --- often in combination with other medications or treatments.

In more recent times, based on the results of clinical studies such as the STAMPEDE trial and the CHAARTED trial, the use of TAXOTERE has been used MUCH more frequently as an upfront treatment for specific cases of advanced prostate cancer. It's important to note that TAXOTERE is also used as a chemotherapy treatment option for other types of cancer besides prostate cancer, as well.

As a weapon of attack, TAXOTERE has cytotoxic properties that attack rapidly growing cancer cells. Some of the cytotoxic, cancer-killing compounds used in TAXOTERE are derived from California yew trees. Who would have thought that yew trees would become a source for a potent form of defense against various forms of cancer.

Meanwhile --- it's important to know each person's experience with chemotherapy, typically TAXOTERE, can vary widely. Some oncologists are now adding additional components to their chemotherapy blends, such as CARBOPLATIN and other compounds, to address the individual needs of the patient. These are commonly nicknamed CHEMOTHERAPY COCKTAILS, as the science of blending patient-specific chemotherapy mixtures continues to evolve in recent years.

During my chemotherapy treatments with TAXOTERE, I felt fortunate, in that I went to work each day and kept up a full schedule during my treatments, for the most part.

Several of us have banded together on this thread, with a common goal of sharing some of our experiences with chemotherapy in a "one brother to another brother" style ... honest and straightforward. We felt that learning about chemotherapy from other comrades who have been "soldiers from down in the trenches of battle" would provide a factual and honest account of our collective experiences, from a wide range of BATTLE BROTHERS, trusted and true ... from right here on our forum.

With that intent in mind, here are some things that I have learned, from my own first-hand experiences while undergoing a series of chemotherapy infusions, that might give you some insight if you are considering TAXOTERE chemotherapy treatments, now or in the future:

1. HAIR LOSS: Truth be told, fellows ... we'll get right down to it ... it's usually every fellow's first question aboutchemo treatments ... yes, I did lose all of my hair from the top of my head --- perhaps two weeks after my first chemo treatment, which is a common occurrence. However, some of my friends kept some of their hair, while ironically, other friends of mine kept ALL of their hair. So, as you can see ... hair loss can vary widely. Hair loss is quite typical for the MAJORITY of chemotherapy patients, so just be prepared in advance, my friends !

(NOTE FROM HEALTHUNLOCKED POSTER --- SEE SECOND PARAGRAPH OF THIS POST --- HAIR LOSS DOESN'T HAVE TO BE A GIVEN)

2. BUZZ CUT STRATEGY: When my hair started falling out, it was very SUDDEN. Almost every person who loses their hair reports this sudden phenomenon. My hair suddenly began falling out in clumps one morning in the shower, without any warning ! CLUMPS of hair in the shower drain ! As I continued to shampoo and then dry my hair with a towel ... even more fell out ! I went to work, not quite sure what would unfold next for me ... it soon became clear that even more hair was falling out throughout the work day, even at the slightest touch. MESSY ! What's a fellow to do, right ? Here's a simple strategy that works ... that evening after work, I quickly drove to a nearby barber shop and got a "buzz cut" to help ME make the transition. In the days thereafter, even the "buzz cut" started falling out completely. So ... about a week later, I finally got out my electric razor and used the electric clipper and completely buzzed off the rest ... and I was bald. To be honest, this was a bit hard to deal with at first, as you can lose some social confidence when you lose your hair so suddenly. At the first sign of hair loss, though, getting the buzz cut FIRST helped ME make the transition to total hair loss. If it begins to happen, go for a buzz cut that day. That strategy helped me immensely !

3. SOCIAL CONFIDENCE RESTORED: To help me deal with my hair loss, I just went and bought some casual hats and also a few dress hats --- I used the casual hats for everyday events and I used the dress hats for formal occasions. Having a VARIETY of hats helped me regain that little edge of confidence for social situations at various times. I also bought some winter hats to help me get through the cold winter season. Here in the Midwest region, the winter season is long and cold, so I was suddenly sporting some new stocking hats when winter rolled around. Hair loss --- if it happens, you deal with it, you throw vanity out the window, and you MOVE ON with your life. People DO understand --- they realize you are going through treatments --- they have compassion. When you put it in perspective --- I had always admired the bravery of others who experienced hair loss when THEY were going through medical treatments --- so, I suddenly realized that any traces of personal vanity needed to be put on the back burner --- and I just forged ahead with my treatments. This is a topic that needs to be addressed ... because fellows DO ask, "Does this mean I'm really going to lose my hair?" The truth ... maybe ... yeah, probably ... and you get over it ... with that being said, it's time to move on, fellows !

4. APPETITE: Before each chemotherapy treatment session begins, they give you anti-nausea infusions and steroids right before the TAXOTERE chemotherapy infusions. These components help you OVERCOME some of the side effects that once gave chemotherapy treatments a nasty reputation decades ago. Quite honestly, I did NOT have any digestive problems or nausea, whatsoever. I was very thankful for that ! Chemotherapy has improved in that regard in the past few years. Many of us have learned from personal experiences that it's best to eat properly while going through chemo treatments --- just do your best to stay away from greasy foods, fast foods, and junk foods, overall ... but don't deprive yourself of your favorite comfort foods along the way ! Personal confession ... after every chemotherapy infusion, I always went out to dinner that night at my favorite barbecue restaurant, just as a way to relax after "treatment day" was over ...

5. HEALTHY HYDRATION: An important lesson that I learned from my experiences and other CHEMO COMRADES here have concurred with this helpful tip over time --- drink plenty of water before each TAXOTERE infusion, but also keep drinking a healthy amount of water FOLLOWING each treatment after you get home. Your body needs WATER to deal with the toxins that are infused with each TAXOTERE treatment. Lesson learned - stay hydrated before AND after each chemo treatment. Water seems to be the best "elixir" for so many types of prostate cancer treatments and medications. Another helpful tip, from one fellow to another --- if you need to use the restroom DURING a chemo infusion, they can easily unplug the infusion machine and then you just plug it back in after you return from the restroom. No problem, no worries!

6. CHEMO ENERGY CRASH: A couple of days after each infusion, then you will typically experience what I call "CHEMO CRASH" --- 2 or 3 days after the treatment, usually. Ahhhh, yes ... the "crash" ... as we all call it, is somewhat of a delayed reaction, occurring a few days after a treatment, because of the initial steroids that they give you when you receive each treatment. A few days after each chemotherapy infusion, a feeling of malaise or lethargy is typical. You're going to feel like a car battery that needs a set of jumper cables on a cold winter's morning to get jump-started. I just found that resting on the couch or in a recliner seemed to help me the most. In a day or two, your body will begin to re-bound and your energy will be restored. The "CHEMO CRASH" feeling will begin to drift away. You can expect to feel this sensation after each treatment, but then it fades away and your energy returns.

7. ENERGY RESTORED: For fellows who are still active in their careers --- my oncologist timed my treatments so that my "chemo crash" would hit over the weekends, so that I could keep up my full work schedule. So, in my case, I had my treatments late on Wednesday afternoons and then the "chemo crash" would often hit Saturday evening or Sunday. By Monday and Tuesday, I could feel my energy coming back. Other fellows starting chemo often ask me, "How bad is the 'CHEMO CRASH' after each treatment?" Here is the description that seems to resonate the best with most fellows ... I tell them that it feels like a MILD hangover ... the mild hangover you might have felt in college the morning after a fraternity party, back in the day. Most fellows then say, "Thanks for that description ... feels like a mild hangover, you say ... been there, done that ... thanks for the honest answer, my friend." With that being said, I felt fortunate that I was able to keep working, with just a couple of days of feeling somewhat drained. My work kept me focused --- gave me goals to meet --- kept me grounded. Living your life during chemo --- many of us have found out that it truly CAN be done !

8. NETWORK OF SUPPORT: Chemo can be a ROUGH ROAD sometimes ... I have described it to my other BATTLE BROTHERS as walking down a gravel road in your bare feet on those rougher days when you feel the "Chemo Crash" coming on in the days after a treatment. Yep, gravel road with a few ruts here and there along the way ... admittedly, there can be some rough days, from time-to-time. Overall, I was pleasantly surprised that I WAS able to go to work and keep up with my usual social events and activities. For any fellow beginning chemo treatments ... here's some brotherly advice ... you need some support along the way to stay motivated and encouraged. Best advice, you ask ? Here it is, quite simply ... stay in TOUCH with family, friends, neighbors, work colleagues, church members, and so forth. You NEED people's encouragement and support to get through the weeks and months of chemotherapy. I worked very hard to keep my head in the game, stay involved with friends and relatives, and to keep attending social events. Trying to keep up normal routines also helped me cope with everything going on around me. Chemo can be a ROCKY ROAD at times --- physically, emotionally, spiritually --- you have to keep forging ahead each day --- so do everything you can to keep busy mentally and physically. At the same time, realize that there are times when you are going to need to rest and relax and take it easy on yourself. I sometimes had to tell myself that I couldn't be "SUPERMAN" in a red cape all the time, and that I simply needed to become best friends with my living room couch on some evenings, stay home, and just relax. I've heard of some fellows whose bosses allow them to take a short "power nap" or rest break during the work day, realizing that they are going through chemo treatments. Kudos to those bosses, for their compassion and understanding !

9. FORGING AHEAD: I was fortunate, because I had a couple of CHEMO COMRADES who went through the experience at the same time that I did. We formed a powerful bond of brotherhood and kept each other going --- checking in with each other --- we felt like fellow soldiers, going onto the battlefield together, supporting each other through those weeks and months. Nothing better than a loyal comrade during chemo treatments, fellows ! We still feel a sense of loyalty to each other from that experience. My advice, fellows ... do whatever it takes to find a loyal friend or relative or neighbor or old classmate or work colleague whom you can talk with and confide with during chemotherapy. If nothing else, this forum can serve that function for you ! There's certainly a band of CHEMO COMRADES for you, right here on this forum, ready to support you, encourage you, and advise you. The loyalty and compassion found here on this website is beyond compare ! After I finished chemo treatments, I now have other friends who have been diagnosed and I have volunteered to be their CHEMO COACH, because I know how important it is for fellows in our situation to have a buddy that knows and understands what this is like. Do whatever it takes to reach out and find some connections ! Support --- we ALL need that !

10. STAYING ACTIVE: Well, what about EXERCISE and physical activity ? I found that keeping physically active, as much as possible, also helped me. You don't have to become an Olympic athlete, fellows --- just a walk around the neighborhood for 20 minutes or so can do a LOT to keep you going during the chemo treatments. I also visited the gym now and then. During the winter months, when snow and ice made walking outdoors treacherous, I walked in an indoor location instead. Do whatever YOU like to do --- walk the dog through the park, mow the yard, shoot some hoops, go fishing, run on the treadmill, pedal the exercise bike, work in your garden, lift a few weights, walk for a bit on the nature trail, stop by the gym for a bit --- whatever appeals to you. Maintain a healthy lifestyle and choose good foods to eat and remember to stay hydrated. After one of my treatments, I slacked off on the water consumption and didn't bounce back as well from that treatment, so I learned my lesson on the importance of staying hydrated after each treatment. Eat a healthy balance of foods, stay as active as you can, rest when you need to, and stay hydrated in a healthy way !

11. CAUTIONARY NOTE: My doctor warned me that a fever of 100 degrees or more is VERY dangerous for chemotherapy patients. Your immune system becomes compromised during your treatments, including your white blood cells --- so there is an increased risk of fevers or infections, of course. So, if you experience any sort of fever of 100 degrees or more, get to an emergency room as soon as possible. There's your cautionary lesson for today --- we have some fellows here who HAVE experienced a spike in fever and they went to the clinic IMMEDIATELY, as they should. A few helpful tips to share ... keep your hands washed before eating --- stay away from cold and flu germs, as much as possible. I teach in an elementary school, with hundreds of young students --- so, I used antibacterial soap throughout the day and used antibacterial cloths to disinfect the student desk tops each evening after school. Keep your kitchen and bathroom disinfected at home, as well, just as a precaution --- in the interest of avoiding colds, flu, strep throat, and fever. A fellow "chemo comrade" of mine gave me a new thermometer as a "gift of caring" when I started my first chemotherapy treatment. Sometimes, the clinic will also give you a courtesy thermometer to keep with you at home and work. DO take action if you feel a spike of fever, fellows --- it is NOT something to ignore.

12. ICE CHIPS STRATEGY: To preserve my taste buds, my oncologist always insisted that I chew on ice chips DURING the actual chemo infusions and my sense of taste remained completely intact during all my months of chemo treatments. PLEASE ask for some ice chips before your infusion starts, fellows. It can't hurt, and it sure might HELP ! True story --- I had a friend who FORGOT TO ASK for ice chips and he regretfully lost his sense of taste --- spicy Mexican food suddenly tasted "bland" to him, so he knew he had lost some of his sense of taste and he wished later that he had remembered the strategy of chewing on ice chips during the chemo infusions. During your months of chemo, take GENTLE care of your mouth, as patients are prone to mouth sores. Brush and floss GENTLY, and avoid harsh brands of mouthwash, which can irritate your mouth because of the alcohol content. For the first couple of nights after an infusion, I took an extra shower, because you can almost feel the chemo "sweating out of your pores" at night for the first couple of nights. If I woke up in the night, I drank some more water. As the weeks of chemo treatments went on, I noticed that my face looked a little "puffy" due to the steroids that they give you before each chemo infusion to help your body tolerate the chemo. This is sometimes nicknamed "moon face" --- not a big deal, fellows, but something to mention. I will also say that my cheeks got a lot smoother --- I shaved every morning, because that's my habit, but your whiskers might really thin out, too, while you are doing chemo treatments. This is normal. Some of my friends who have recently gone through chemo were actually thankful that they could SKIP shaving, at times !

13. NEUROPATHY PREVENTION: Also --- my oncologist used this strategy and I have heard that more and more oncologists are now following this idea --- I was a bit incredulous at first, but now it is becoming more mainstream in its implementation among many doctors who oversee chemotherapy treatments. Other fellows here have now followed the same protocol. Here's how it worked in my case ... during infusions, they had me take off my shoes and I kept my socks ON --- then they put ice bags at my feet and told me to keep my feet on the ice bags during the infusions to prevent neuropathy --- they also placed ice bags on a pillow on my lap and told me to rest my fingers on ice bags to prevent neuropathy in my fingertips, which I did. I did this for EVERY chemo infusion session and had NO problems with neuropathy at all. My oncologist swore by this "ice bag method" method and so did my chemo nurses. So --- be PROACTIVE in advance and ASK for ice chips to chew on during the infusion process, to prevent loss of taste buds --- but also ASK your doctor about possibly using ice packs for your hands and feet to help PREVENT neuropathy damage in your fingertips and toes. Other fellows here have since affirmed that their doctors implemented this same method and reported positive results. PLEASE ask your doctor about this strategy, fellows ! Can't hurt and certainly MIGHT HELP !

14. HOT FLASHES & NIGHT SWEATS: Commonly, fellows who are starting chemo treatments are ALSO still taking ADT hormone shots to help control their P.S.A. levels. If you are taking ADT hormone shots and then begin chemo treatments, this COMBINATION of treatments is called "chemo-hormonal therapy" by doctors. Many men who are taking ADT hormone shots experience hot flashes throughout the day and/or nights sweats during the night. Some simple strategies for coping with these sudden and unexpected fluctuations in temperature that I have discovered over time include using room fans or ceiling fans to keep yourself cool and comfortable ... keeping glasses of ice water nearby throughout the day and on your nightstand by your bed ... wearing a lightweight cotton athletic shirt, with a button-down Oxford-style shirt over that, so that you can roll up the sleeves and adjust the buttons as necessary ... use cool cotton sheets and pillowcases for your bed, and you can double-sack your pillows to protect the pillows if you experience night sweats ... and some fellows use ice "gel packs" to apply to their forehead when a hot flash occurs. These are just some simple suggestions that I have gleaned over time if hot flashes or night sweats occur.

15. CHEMO BRAIN PHENOMENON: During the months of chemo treatments, I did feel that it was a bit harder to concentrate for longer periods of time. I functioned well at work throughout the day, but suddenly didn't feel that I could focus as well on a long chapter book or a long movie at night. Some chemotherapy patients describe it as "brain fog" or "chemo brain" and I think there is something to that. So, I contented myself with reading the newspaper, watching the news, and shorter television shows. Many fellows going through chemo feel that it's just harder to concentrate, to some extent. A common phenomenon experienced by many fellows who have undergone chemo treatments ! So --- if you find your attention span drifting a bit or find yourself forgetting a few things, now and then ... you can blame it all on what we have nicknamed CHEMO BRAIN ...

Again, while going through a series of chemotherapy treatments ... do EVERYTHING you can to stay interested in your family, friends, your usual activities, hobbies, and the world around you. Chemo is a CHAPTER in your life story --- don't let it become the TITLE of your BOOK OF LIFE. Keep living life as you go through the treatments, to the fullest extent possible !

I hope my list has given you some "real life" insight into my experiences with chemotherapy. These are the things that I learned from my experiences while going through TAXOTERE chemotherapy infusion treatments. These are some things that the standard chemo brochure from the doctor's office won't necessarily mention !

In all honesty, I felt I navigated through the entire series of chemotherapy treatments with side effects that were relatively MILD and very TOLERABLE ! I hope the things I have shared give you true-life insight and some things to consider. Each fellow has their own personal experience with chemo treatments. As I see all the responses being added to this thread, I feel that this thread is becoming very informative, with experiences gathered from a wide range of fellows who are now members of THE CHEMO CLUB.

teamkv profile image
teamkv

I have heard fasting before treatment and a bit after helps A LOT with side effects and makes chemo more effective. I suggest researching as there are many studies on it. Hope if helps you.

R410a profile image
R410a

Check out Penguin Cold Caps on Web. System uses dry ice and a system of caps for your head. It involves a number of steps but it does prevent hair loss. You need to do this by your first infusion, it takes time to arrange for caps, so you may need to delay your start if you want to use this treatment

rust profile image
rust

Starting today and thanks for the intell!

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