End of Immunotherapy trial - what next? - Advanced Prostate...

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End of Immunotherapy trial - what next?

easeytiger profile image
19 Replies

Today I had bone scans and MRI following five cycles of an immunotherapy trial. Although there has been no visible progression on my scans since October, we have not seen a regression, this along with a rising PSA was enough to see the end of my treatment on this trial. Now I am looking at starting chemo in a few weeks. I am 44, still working almost full time, I have young children and very worried about how the side effects of the docetaxel are going to hit me physically and whether holding a job down while on this treatment is even possible. Other questions such as how long you can expect treatment to be effective, combating the side effects would be useful.

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sedgley profile image
sedgley

Hi Easey. Was this your trial at the R Marsden? Can’t comment on the chemo as I haven’t done it yet but I am in line for a trial there once whole body MRI and biopsy results are in.

How do you find them so far?

easeytiger profile image
easeytiger in reply tosedgley

Yes. I most likely with go back to the RM for trials if suitable. The staff are amazing and level of care and treatment are outstanding. I just didn't have a positive response.

Tall_Allen profile image
Tall_Allen

Younger, healthier people usually have milder side effects, although it can vary. I've known several men who continued working throughout.

Hey, We have talked briefly before, my late partner, same age as you, handled docetaxel well. He became more and more fatigued as it went on and needed to rest in the afternoons, he wasn't working at the time either but not sure he would have managed it. He felt a little tired / "different" on about 3/4 days after chemo so would take it very easy around these days. His cancer was aggressive and prolonged his life for a few months. But everyone is different and for others I am sure it can be much more effective. Please feel free to reply or DM if you have any further questions

greatjohn profile image
greatjohn

Hey,

sorry to hear of the short term trial....always like to hear when they work well. I was NOT working during Chemo with Taxotere/Docetaxel that I had last year ( I had my last chemo session on Jan 28th 2018). I could not imagine working on the 3 or 4 days after the chemo. I had it on Friday was wiped out until Tuesday/Wednesday. I had to use the Neulasta Onpro to keep up my white blood cells and that might have been a big part of my issue. I think you could work between sessions...you'd just want to schedule Chemo on Friday to have a couple of days of weekend and then maybe two days off of work. However, it's different for everyone...and like most people say...the first is the easiest and they get gradually harder. However, if you do have to do the Neulasta...MAKE SURE....you take the Claritin BEFORE the thing goes off and keep taking it. The bone pain I experienced from Neulasta has been my worst pain since starting this "journey". The nurses forgot to tell me about Claritin and only told me the following Monday when I told them when they called to check on me that I was in severe pain...then they said "oops ...I guess we forgot to tell you". Claritin was a MIRACLE for me...within 1/2 an hour I was feeling much better.

Good Luck,

John

hansjd profile image
hansjd

Hi Easey. At age 75 last Apr - Jul, I did 6 cycles of docetaxel and it was fine. As someone else said, about day 3-4 after the infusions, I felt flat both physically and mentally, but not for long and beyond that the side effects were quite tolerable. You being much younger should not have a problem.

I had an injection of Neulasta the day after the infusion (from number 3 - 6) because my WBC decreased somewhat and this ensured they stayed at a satisfactory level. Haemoglobin decreased a little too and at number 5 I had a transfusion before the docetaxel. Again no problem.

I would recommend putting ice packs on the hands and feet starting 10 min before the infusion, then 20 min on and 10 min off, repeated until 10 min after the infusion. I believe it helps to prevent peripheral neuropathy. I did that and didn't get any. Also sucking on ice cubes the whole time helps prevent mouth sores. Again I didn't get any.

My hair, both on the head and the beard thinned out quite a lot, but grew back the same or thicker within three months. All the best with it.

Kat95 profile image
Kat95

Hi, you’re lucky to be at royal marsden where dr Johann de Bono is. What immunotherapy drugs were they using in your trial? My partner had docetaxel and it wasn’t too bad for him. No nausea. Some fatigue but nothing major. Good luck.

Schwah profile image
Schwah

So sorry to hear you joined this club at such a young age. We try not to let guys in before 60 but we will make an exception. I’m 62 and did chemo last year. They give you a bunch of drugs with the chemo to help and it did. Days 4 and 5 were the worst. Kinda flu like symptoms but not horrible. If you really need to work I’d do the chemo Tuesday or Wednesday and the weekend will be your worst days. Good advise on the ice. I also paid for “Cold Caps” that you change every 30 minutes or so (to keep them cold) during chemo and for 3 or 4 hours after. Kinda a pain but I kept my hair. It wasn’t vanity. I just didn’t want to look the cancer part at work. Also force yourself to get out of bed. Even on your worst days. Walks and exercise and fresh air really help. Lots and lots of water before and after to flush it out. Finally I was advised to fast for 1 or 2 days before chemo day. I heard it minimizes the side affects and supposedly makes it more affective. Not sure if that’s true because I never got past missing one meal. Maybe some of the smarter guys here will comment on that. Have some good laxatives on hand. I got pretty stuffed up. The nausea meds they give supposedly do that. My wife did chemo for breast cancer and my dr said that chemo is way worse than ours. And she did fine too.

Schwah

MarkBC profile image
MarkBC

I am 55 and finished six docetaxel treatments a few weeks ago. I am fortunate to have good work benefits so I had the entire time off work. As others have said, I don't think I could have worked during days 3, 4, and 5 after treatment. I was in bed most of those days with very little energy. I wasn't back to my normal self until around day 7 or 8 after treatment. The last two treatments took longer to recover from and gave me additional side effects (food tasting bad, neuropathy in toes). Overall the experience wasn't as bad as I imagined it would be. Good luck to you.

huhnes profile image
huhnes

I had 6 rounds of dositaxil. Didn't miss a day of work. I have an understanding boss...he too has cancer. Anyway, brain fog set in after 4th or 5th round. I had chemo on Wednesday mornings. Went to work after, worked Thursday and Friday, then slept entire weekend. Went to get my white and red blood cells checked Monday morning. Then back to work.

Work became mentally hard after 5 doses...hard time concentrating.

I had no neuropathy...it wasn't too bad really.

EdBar profile image
EdBar

I had 6 rounds of taxotere when I was 56. I continued to work during treatment however my job allowed me to work from my home office the week following treatment. Side effects were pretty rough especially after the first couple of treatments. Felt like a bad case of the flu, fatigue, chemo brain fog, mouth sores, lost my hair and fingernails became lose and discolored. I still suffer from neuropathy and an impaired immune system.

It was really important to stay out of situations that exposed me to colds, flu, etc. since my immune system took a hit. I even used to arrange to sit in my car until they were ready to see me at the doctors office so I didn’t expose myself to the germs in the waiting room.

That said, 3 years later, PSA is undetectable, and given the choice I’d do it again to be where I am now. I’m also on triple ADT including Xtandi and I also take Metformin.

You may want to look into the Family Medical Leave Act or ask for reasonable accommodations while undergoing treatment. Good luck.

Ed

TNCanuck profile image
TNCanuck

Gosh, you are so young. I'm sorry you have to be here. But know that it is completely possible to manage and continue your life while you are receiving chemo infusions. I posted something a few months ago, but it's time to share it again. My husband followed these guidelines and at 58 never missed a day of work through chemo. Here's the original post I shared:

This 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 !

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.

Dayatatime profile image
Dayatatime

Easey - I did 6 rounds of docetaxel when diagnosed at 46 years old. I never missed a day of work however I do think that might depend on how physically demanding your job is. As others mentioned I would also recommend having it done on a Wednesday so the weekend can give you some recoup time. Thursday I was always still jacked up on steroids and by Friday afternoon the toxicity would start creeping in. My first treatment my head felt really cloudy and as my body adjusted that didn't seem as intense. By treatment 4 my legs felt heavy and by treatment 6 legs felt like lead. Neulasta shot effects not fun but the worst was on weekends so tolerable. Something I did that kept me with energy through the infusions was to do mild exercise. I actually took a step stool and did light stepping. My idea was that it would slightly increase heart rate and possibly spread chemo throughout my body more effectively. I liked the idea of staying moving and feeling like I had energy. The atmosphere of an infusion room can be quite depressing and I didn't want to be like everyone else around me. I liked being focused and not sleeping looking defeated. I had a great response to chemo and it cleaned up a lot of disease. I believe in getting it early, while your strong and cancer is weak. It's a tough treatment but well worth it.

Ron

Beermaker profile image
Beermaker

Excellent, comprehensive posting. I read every word, and will bookmark it for use when my turn comes. Thanks, Tiger!

Grandude profile image
Grandude

Dr. Luke @ gucancer.com showed me many cases of his where bone scans were stable (no progression) for years while psa was on the rise. Being very young it is even more important to get as much time as possible out of each treatment as eventually your toolbox will become empty.

As for the doctaxel/taxotere I recieved that as 1/3 dose (50mg) for a year with a 2 month break in the middle and had very mild fatique and nausea usually on day 3. You can time that to fall on weekends.

I am 59

j-o-h-n profile image
j-o-h-n

Just take it easy tiger...

Good Luck , Good Health and Good Humor.

j-o-h-n Thursday 01/24/2019 6:37 PM EDT

Tell your doctor you don't want to go on chemo. Have him/her put you ADT. Less side affects. I worked through a lot of ADT drug and keep on working.

Hotrod65 profile image
Hotrod65

Went that route, 16 weeks... infusions were on Tuesdays..,Friday it hit me with fatigue and overall spaced out feeling lasted till Monday and i was Good again, if you can get this kind of schedule it may help your work situation where the worst part of it is over a weekend...Best of luck.

Mascouche profile image
Mascouche

According to Dr Valter Lungo and others in that field, you can noticeably improve the effect of chemo and already reduce its side-effect by fasting 3 days before the chemo and continuing to fast until 24 hours after the chemo.

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