First, I’d like to say that I’ve been reading posts for several months and have learned so much from you all. I take my dad to all of his doctor’s appointments and treatments. I work in the medical center across the street from both MD Anderson and Methodist Hospital. So, not going isn’t an option.
I’m on this site in hopes of getting a better understanding of advanced prostate cancer as well as making it easier on my dad. He’s always been such a healthy, super energetic, positive man, but I see the sparkle in his eyes dimming.
My dad is 64 and was diagnosed with stage IV Metastatic prostate cancer 1/17. The only reason he went in to get tested was because 2 of his 4 brothers have prostate cancer. He had additional testing and it was negative for mutations in the BRCA1 and BRCA2. I’ll have to pull up the results to see if it showed anything for HOXB13. His Gleason was 10, starting PSA of 121, spread to upper left femur and parts of ischium. We began with Lupron (every 3 months) and XGEVA monthly. His PSA dropped down to 13 and we were so happy and thankful. Unfortunately, his PSA levels began climbing. I had read about how great Zytiga was and I wanted my dad to try it. I went on to the Zytiga Johnson & Johnson assistance program website (amazing people just a lot of daily following up) and were approved for assistance meaning ZERO dollars needed for medicine. (Aetna cancelled my dad’s insurance 12/31/16 (he had a biopsy and received Gleason scores before Christmas) him and my mother had that insurance plan for over 7 years and bam cancelled 12/31/16. Basically, we paid out of pocket for all treatments for the entire year of 2017 bc we had missed the timeline of signing up for an insurance carrier who was able to be seen in Methodist or Md Anderson. We chose Methodist bc it was 10K to start treatment vs MD Anderson which was 2 maybe 3 times more. Anyway, he began zytiga 11/17 and after 3 months have had to stop zytiga as it’s not doing what we hoped it would. My dad’s PSA never dropped while on Zytiga. His PSA is currently 136 the highest it’s ever been. He will begin taxotere 3/2 (every 3 weeks, 6 cycles). Treatment will continue at Methodist Hospital in Houston. I'm writing in hopes of receiving advice/tips for my dad while he’s doing this, what to expect and lookout for. My dad doesn’t complain at all. I just know he’s losing hope which breaks my heart. Yesterday, my dad told the doctor that he knows/understands that we all will one day die, but he isn’t ready to do so.
Thank you for reading.
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Gabbi108
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Glad you joined our group for advice and support. I know you will get a lot of good advise regarding treatment options.
With respect to chemo, sounds like your dad is in overall good health other than the PCa. If so, the chemo is likely to be very well tolerated. I had to get mentally prepared for it. And found that it was a bit like planning to get a mild case of the flu every 3-weeks. You actually feel fine when you leave the infusion center. My wife and I would leave and have a late lunch at a restaurant. Start feeling poorly a couple of days later. Body aches, fatigue. But that’s about it. And maybe a week later you start feeling better. By the end of week 2, pretty much back to normal. I kept working full time through it. Just worked from home the week of treatment. Then back to the office or traveling.
A few tips:
1) ice your finger nails and toes during the infusion to avoid having any issues like nails falling off.
2) use a skin moisturizer daily - his skin will dry out.
3) exercise will help combat the fatigue. Even if it’s just walking 2-3 miles per day.
4) Nulasta will likely be injected the day after the infusion. It can cause bone pain and body aches. Take Claritin daily for it. Not sure why it works, but the doctors and nurses recommend it and it does help a lot.
5) Remember that when each treatment is over your dad is close to finishing this treatment regiment.
Best of luck to you and your dad on this journey. We are all praying for you!
Thank you, James! I really appreciate your advice/tips. My dad really is in overall good heath. My dad is also working full time. I mention that he should really plan to take a few days off. The flu is the perfect way to describe it.
My dad’s nurse said the exact same thing about claritin. I’m going to buy some later today. I’ve ordered a few things for him on Amazon and am trying to get him mentally prepared for it.
Hello, I noticed that you read/liked my post about fasting and chemo. In my case, I was spared the bulk of the side effects and still do it daily from 7pm to 1pm the next day. Do a search for fasting and chemo and Dr. Longos research will pop up. Please feel free to message me for more details, tho I believe I've posted all the info previously. Best to you and Dad
Gabbi, James had some helpful advice, I would like to add, that the chemo can affect the tear ducts of the eyes , and that it is rinse during and after chemo with artificial tears, I did not do this the first cycle and my eyes tear every day. Also it is good to have a mild laxative if needed as well as immodium if that is needed.It is good to eat small meals when hungry, and I also sucked on ice cubes I brought with me to prevent taste change. ( I do not trust ice from the hospital) Chemo was something I feared for a long time and when I did it , it was pretty much no problem, and I wondered why I feared it so much. I am now on second line chemo javenta. I wish you the best , Dan
Thank you for taking the time to read and respond to my post. The advice/tips have been noted. I will make sure we have some in our bag! Also, not sure we’re you’re from, but I had already thought of bringing Sonic ice with us. Definitely not the hospital lol I’m with you on that! I’m so happy to hear that you no longer fear it. I really hope your body is reacting well to your new treatment!! I have a feeling that you really are. Sending positive energy your way
Thank You Gabbi, I walk in to the chemo room with a rolling cooler ful of ice and ice packs, I am not sure what sonic ice is, I will google it. We are all here for you and your Dad whenever you have any concerns.
I’m currently on docetaxel and I agree with everything said in the previous posts. Much to my surprise it isn’t that bad. Main side effect in fatigue. I think that good nutrition and good health are key to having a event free adventure with this stuff. I’m probably going to be taking this stuff indefinitely so it was good news that it’s not that bad.
Chemo suggestions- one of the best suggestions I got from this site was to keep a daily record. Document from day of infusion, during, and post infusion.
So,my father is going through his 3rd round of Jevtana and carboplatin on Friday. Fasting is a great idea, my father couldn’t because he is on metformin and diabetic (otherwise his MO and i would have encouraged him to do it!) Take Zyrtec 1-2 days before. Helps a lot with the bone and joint pain. Make sure they give the premedication SLOWLY- my father got restless leg syndrome. I’ve iced toes and hands, plus had him sip on a very cold ice tea ( kept his fingers frozen as he held it). So far side effects from worst to least severity-constipation, fatigue and diarrhea. He takes a colace and Zyrtec the night before to battle constipation and bone pain. Fatigue was present but not as bad as what Xtandi caused. The 2nd chemo was a breeze (knowing what to expect) he had minimal fatigue which he took a nap daily and walked. Other then that he looks and feels great. We are waiting to see what the results are on Friday and hopefully his PSA and Chromogranin A has decreased. ( fingers crossed chemo is working). Good luck, keep positive, I go with my dad to every infusion and appointments. This site is a wealth of information and has helped me as well as my family deal with what to expect!
The nice thing about MDAnderson is that they have more clinical trials going than just about anyone. And there are many clinical trials looking for patients like your father (mCRPC). One often doesn't have to be a patient there to get on their clinical trial.
The FDA-approved medicines, other than Zytiga, that have proven survival benefit for men with mCRPC are Xtandi, Taxotere, Xofigo, and Provenge. Xtandi usually doesn't work very long after Zytiga fails, but in a few cases the resistance has been reversed by Taxotere. I am hopeful that Taxotere will work well for him. Taxotere has the highest leverage in terms of survival and quality of life. I think Taxotere and Provenge make a great combo because the Provenge corrects Taxotere's immunosuppressive effects, and Taxotere presents a lot of dead cancer cells to the immune system, possibly augmenting Provenge's abscopal effect. Xofigo does not combine well with Zytiga, and may also be immunosuppressive so he wouldn't want that until sometime after Taxotere.
Radiation can be used for several purposes. If he is having bone pain, SBRT (just 1 or 2 zaps) can afford a lot of relief and prevent fractures or spinal compression. MD Anderson is currently running a clinical trial where metastatic patients are randomized to receive prostate-directed treatment or standard of care. The prostate-directed treatment may be either surgery or radiation, at the patient's choice. (Unless he has severe urinary problems from blockage, radiation would probably have fewer side effects.
I wish I could say I had mild side affects to taxotere but unfortunately for me it was not the case. For me if there was a side affect I got it. The good news is my PSA Is down to 0.4. I did finish ten treatments. My nails are falling off and my hands and feet are pens and needles still after 10 weeks off of taxotere. The worst part is I have a real hard time walking.
I might be the worst case senecio but it worked so far. I am getting better slowly. I started walking again and get about 100' before I must rest. So I'm happy and grateful that I'm still here. I'm 63 and I have been battling this for almost 13 years now with the last 6 in stage 4 so your dad will have a long battle ahead. With treatments hopefully it will be until the cure is found. Best advice I can give is be positive and never give up or quit. I'm off for a walk all 100' at a time.
No, I did not know about the ice. I had been away for a few months. I did use moisturizer on my hands and feet. I did two months of zytiga then we went to toxotere. My first two infusions were there weeks apart then we pushed them to 28 days. I was one of the one who did not tolerate it well. Man I got sick. Like the worst flu ever. Then my blood sugar was all over the place and my blood pressure did the same. The my hands and feet got numb ad I could not walk. I was a tough road but I made it thru six treatments. My PSA is at 0.4 and herald there for 12 weeks. I fell pretty good now my finger tips are pens and needles almond with my feet but I'm up and walking again about 100' at a time. I'm getting better and not looking back. Been doing this a long time so I'm still in for the long haul. I will not quit or give up. Hey the cure is right around the corner and I plan to be here for that.
Hi Gabbi, I am completed 3 rounds of chemo, with 6 to go. So far so good, only side effect I have noticed is that my beard had almost disappeared. In the big scheme of things, a small loss.
I can only echo what others have already said.
1. Get fit, get healthy. Last year, when I discovered that I had advanced PCa I quit work to focus on the battle ahead. I adopted a vegan diet, and exercised every day. I lost 20 kg in 6 weeks and I feel better that I have in 20 years. Unfortunately this did nothing to slow down PSA increase, but I believe that it has helped me tolerate ADT and chemo with minimal issues.
2. Fasting. I picked up this tip from Randy Kam who has already chimed in here. I eat nothing but water for 2 days before chemo, and day of chemo. Its like giving up smoking, the first day is hard but after that you forget you are hungry. I have realised that most of my eating is based on habit not need. But do drink plenty of water. 3 litres per day is recommended when you are on a water fast.
3. Stay positive. AS you can see from a few folk here, chemo is not necessarily a bad trip. Don't sit around waiting for it to make you sick. Get on with life. I exercise immediately after finishing chemo and have never felt sick or fatigued (so far so good). I play competition tennis 2 nights a week. I walk the dog every day, have a weekly session with my exercise physiologist and i have a weights/ resistance program to complete at home every night.
Greetings Gabbi and to your Dad. I had 6 rounds of chemo last year. These find gentlemen have provided very valuable information. Fatigue was my main side effect. To counter it, I took walks and did light stretches. My Onc prescribed me compazine in the anticipation of nausea. I suffered a mild symptom of it 48 hours after each chemo. I just drank ginger tea instead and it worked fine. I was treated at MD Anderson in New Jersey and they treated me like a king. They didn't take their eyes off me. Your Dad will be given benadryl during each treatment and to me that was the best part of it since it made me fall asleep. Since your Dad is in good health, I believe he will be fine. I didn't miss a lot of work time.Keep us posted of his progress
You have already gotten great info from the guys here, but here are a few more (I just completed 6 cycles of Docetaxel/Carboplatin chemo):
1. My Med Onc suggested daily oral 100mg B6 to mitigate peripheral neuropathy. As suggested, ice hands and feet for duration of Docetaxel infusion.
2. Google Mayo Clinic and Wisconsin American ginseng for their trial moderating chemo induced fatigue. Fatigue can become a major issue.
3. Buy Biotene products for mouth care. They make toothpaste, mouth wash, etc. His mouth may suffer as it contains fast growing cells.
4. Expect or demand a steroid to be taken the day before, the day of, and the day after chemo, as it reduces immediate side effects. My Med Onc used Dexamethasone.
5. I had a small infusion of Aloxi before any chemos. It prevents nausea and I had none.
After 8 cycles my hair started to grow back, I did lose 25 lbs, but it was extra weight from adt , This time I am going to try putting vit e oil into hair before chemo, and using an ice pack to prevent hair loss, as My hair came back thicker with less grey and a wave after chemo last time, I want to keep it.
I knew about them, they can be ordered by googling elastogel gloves for chemo , or elastogel helmut for chemo, A nurse told me they did not work, though someone on this site used it and claimed it did,.
Thanks again Dan. I have a female friend who underwent a long cycle of chemo for cervical cancer. The hospital supplied the helmet and she never lost her hair. Don't believe everything they tell you, sometimes there are hidden agendas going on in the medical world to our detriment. I wish you all the luck in the world.
Excellent Mark, I think the dex day before , fay of and day after helped me a lot, as well as the aloxi, I never felt nausea. I am now on Javenta, best of luck with your current treatment.
Glad to hear your dad is getting such great care. He is fortunate t have you there to help him. Sorry to hear about the insurance problems! That is a whole other issue.
James Atlanta pretty much hit the nail on the head in terms of what most of us can expect. At least that has been my experience. I just had my 5th (of 6) docetaxel infusions. For me, the slide into the flu-like symptoms, mostly body aches and fatigue, has been fairly predictable, starting about 3 days after each infusion. During that period I just do whatever I can tolerate and try to avoid all the people with colds and flu. It lasts a week or so, then I start feeling better again, and I am able to resume golfing and other activities. I also had quite a bit of hair loss following the first two cycles, but it has been stable since. Dry skin is an issue, particularly my hands and feet. My angel wife has been giving me regular arms/fingers/feet/toes rubdowns with Jurgens Ultra Healing lotion, which helps a lot to alleviate that problem. As needed, I use Imodium for diarrhea, and Senekot S Dual Action for constipation. My only other issue has been some mild, transient neuropathy in my fingertips, not bad enough to alter my treatment scheduleor cause any issues with fine motor skills. My blood counts have remained fairly normal, so I haven’t needed Neulasta.
Best wishes to, and prayers for, your dad. Try to keep him positive. I went through the same gloom and doom when I was first diagnosed in 2015. There are a lot of us in here who are Stage 4, and I for one plan to live a long time with it. 😎
Not yet. I just had my 6th (and final) chemo on 3/13. They told me it would take a couple of months before hair growth would resume, and up to 6 months to be normal. John st have to be patient (and wear hats) 😎.
Some advice on hydration: if you drink more than 1 1/2 liters of water a day, you are flushing out the electrolites from your system that you need. Replacing these was the reason Gatorade was invented. There are lots of zero calorie electrolite replacement drinks on the market. Use one of them also if you are doing any heavy hydration. Sometimes we forget that anything can be overdone, even water drinking.
"Aetna cancelled my dad’s insurance 12/31/16 (he had a biopsy and received Gleason scores before Christmas" WHY? (Always Engage The Negative Attitude).
"Yesterday, my dad told the doctor that he knows/understands that we all will one day die, but he isn’t ready to do so." DUDE HAS A GOOD TUDE.
Keep up hope is number one 😀😀😀😀 I went thru 6 rounds of chemo and Lupron with Xgeva shots. , rough but could have been worse . Medicare picked up a lot of it . Unlike the prescription drugs that are not covered 18 months and the PSA is .005. Forgot after chemo they put me on Xtandi. They do have a assistance program . Hope this helps
Thank you all so much for all your kind words and support!! I can honestly say that I believe my dad’s first round of chemo went well. We took all of the advice (fasting, eating chips of ice, icing toenails, fingernails and a few more). My dad said he was extremely tired and didn’t know if he’d ever feel better again, but feeling/being tired didn’t stop him from checking in to work the following day.
With me, first round recovery started at day 5. By the end of #6 took 11 days to recover. By #9 (we pushed it) I thought I would die. 31 days since treatment and feeling better every day. Side effects were cumulative until last treatment where the didn't add but multiplied. #8 added back sloughing skin, more numbness. #9 all my skin wanted to fall off and knives in belly that are still there but getting less bothersome daily. First time I had absolutely no energy, eye site badly effected, off work till day 18 after treatment..
Just go till improvement no longer out way side effect . Then pull the plug. I now know why so many off us only get 6 or less cycle. Friend of mine made 2, then platelets dropped so low it was hospital and transfusion time.
Ice works wonders for a while to stave off nail loss and neuropathy . Good luck on your long trip through treatments.
Gabbi, we moved last week so I've been out of pocket. So glad to hear the first infusion went well. I'll post the tips for chemo here. Credit goes to the author, who posted it on another site. I will add that HAIR LOSS DOES NOT HAVE TO HAPPEN. It was important to my husband that he keep his hair so he didn't "look sick" to co-workers. We used the cooling caps, and THEY WORK - no hair loss!
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, including prostate cancer ?!! Thank you, research scientists !
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 !
SEE MY NOTE AT THE TOP OF THIS POST --- HAIR LOSS CAN BE PREVENTED!
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.
Hi Gabbi: my husband has had all the same treatments as your dad. He started Docetaxel 3 weeks ago and will have second treatment Monday. First treatment went well. A little diarrhea. No particular fatigue...no nausea. Unfortunately his hair is starting to fall out although it’s not noticeable...except to me!
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