I have searched here and on the internet. My MO assures me that I would tolerate my first round of docetaxel better than I did with Lupron SEs. I have exhausted my time off from work due to other medical issues. MO says most people are capable to continue working while getting infused. ( I have a desk job) Otherwise I'll be in trouble. I am 61. I have to continue working. I've looked in Market Place and turns out health coverage for me is not affordable. I am lucky to have a great insurance through my job. Anyway, my question is:Docetaxel is classified as one of the most toxic chemotherapy treatments available. I also know there's no telling how each individual will react.
Could you guys share your experience with this medication?. Thanks in advance.
Galo.
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Some people seem to tolerate docetaxel better than others. I was on Lupron and Abiraterone & Prednisolone and managed docetaxel ok util the fourth (out of six) infusion after which I had to go on sick leave. I too had a desk job. I was just 50 y/o so maybe they gave me the strongest dose possible (not sure if docetaxel is always given in the same dose).
I’ve read about others here who could stay working through all infusions just fine.
You don't have a short and long term disability policy thru work? You may go out on short term disability while doing the infusions and then return to work between infusions. Discuss with HR on how your short term disability works. This would be outside any paid leave you have usually.
My sweetie had six sessions of docetaxel. Other than some hair loss, his main side effect was fatigue on the second day after infusions (others have shared that same timing with me). Understanding that you work full-time and don't have the ability to be off from work, if you have the ability to schedule your sessions, for example, on Thursday/Friday and have the weekend to rest, it may be helpful.
Usually you will have to take a day off after the infusion. There are weekly or biweekly treatment plans for the chemo which cause fewer side effects because you get a lower dose each time.
MO is prescribing docetaxel 6 infusions ( he hasn't said anything about the dosage yet). One every three weeks. I will be needing 18 weeks to go through this treatment.
Every three weeks with 75 mg/m2 is the standard. If you ask him for the biweekly schedule with 50 mg/m2 he will know that. onclive.com/view/docetaxel-...
Some chemotherapy drugs used to treat advanced prostate cancer can have significant side effects, but it's important to remember that the severity of side effects varies from person to person. Here are some of the commonly used chemotherapy drugs for advanced prostate cancer that are often associated with more pronounced side effects:
1 Docetaxel (Taxotere): This is a common first-line chemotherapy drug for advanced prostate cancer. Potential side effects include:
Neutropenia (low white blood cell count), which can increase the risk of infection
Peripheral neuropathy (nerve damage), which can cause tingling, numbness, or weakness in the hands and feet
Alopecia (hair loss)
Fatigue
Nausea and vomiting
2 Cabazitaxel (Jevtana): This drug is typically used after docetaxel has failed. Potential side effects include:
Diarrhea.
3 Mitoxantrone: This drug is sometimes used in combination with prednisone. Potential side effects include:
Cardiotoxicity (heart damage)
Myelosuppression (bone marrow suppression), which can lead to low blood cell counts
Nausea and vomiting
Alopecia
It's important to note that this is not an exhaustive list, and other chemotherapy drugs may also be used to treat advanced prostate cancer. The choice of chemotherapy drug will depend on various factors, including the stage and severity of the cancer, the patient's overall health, and their individual risk factors.
If you have any concerns about the potential side effects of chemotherapy, please discuss them with your doctor. They can provide you with more specific information about the risks and benefits of different treatment options.
I can't say who said that, but I can tell you that Docetaxel is a chemotherapy drug that can have serious side effects. Some of the most common side effects of Docetaxel include:
* Low white blood cell count (neutropenia)
* Low red blood cell count (anemia)
* Low platelet count (thrombocytopenia)
* Hair loss
* Fatigue
* Nausea and vomiting
* Diarrhea
* Mouth sores
* Nerve damage
* Fluid retention
Docetaxel can also cause more serious side effects, such as:
* Heart problems
* Lung problems
* Liver problems
* Kidney problems
* Secondary cancers
If you are considering Docetaxel treatment, it is important to talk to your doctor about the risks and benefits of this medication
T.A. If you have information that can help, share it. Otherwise, Please don't make me feel like I am back in school and you are that teacher with a ruler in your hands ready to slap mine because I am not giving you the answer you want to hear.
I know perhaps a dozen men personally who have had only mild symptoms. I'm not saying it's a walk in the park, but I am saying that you are "catastophizing." You are going on the internet and finding lists of possible side effects and imagining you will get them. In contrast to your imagination, docetaxel is among the mildest of chemotherapies.
Nausea is seldom a problem. Even your hair can be preserved with a cold cap. Icing hands and feet can prevent neuropathy. Exercise combats fatigue, and hydration is important. Several men I know continued to work throughout therapy.
"Catastrophizing involves believing that you're in a worse situation than you really are or exaggerating your difficulties"
"Yes, advanced prostate cancer, particularly when it has spread to other parts of the body (metastatic), is considered a catastrophic disease"
Oxymoron?
"No two fingers are exactly alike, even if they are part of the same hand."
Your profile says you act as a patient advocate, yet, you were only a PC patient for a little while. This explains your lack of empathy, You only know what you read. My posting is about asking people who have actually experienced the SEs caused by the treatment I am about to get. How can you advocate when you have no idea of my life circumstances?
I said you were catastrophizing the possible side effects of chemo.
When I was first diagnosed, the best thing I did was to seek psychotherapy. I learned that I was bringing my parents' horrible experience with cancer to my own. I also learned Mindfulness, which I continue to practice. I am a big believer in psychotherapy, and from your post, it seems that it can help you too.
Sorry- my friend. I am with TA. If you don’t want to call catastrophizing/ how about we just say you provided incorrect info about it being the worst form of chemo and that listing all of the side effects to support your claim was not on target. I wish you an excellent response to your chemo treatment and hope you have mild SEs, if any at all. Good luck!
Tumor lysis syndrome (TLS). TLS is caused by the fast breakdown of cancer cells. TLS can cause kidney failure, the need for dialysis treatment, or heart problems, and may lead to death. Your healthcare provider will do blood tests to check for TLS when you first start treatment and during treatment with Docetaxel Injection. Tell your healthcare provider right away if you have any symptoms of TLS during treatment with Docetaxel Injection, including:
o
nausea
o
vomiting
o
confusion
o
shortness of breath
o
irregular heartbeat
o
dark or cloudy urine
o
reduced amount of urine
o
unusual tiredness
o
muscle cramps
•
You may experience side effects of Docetaxel Injection that may impair your ability to drive, use tools, or operate machines. If this happens, do not drive or use any tools or machines before discussing with your healthcare provider.
The most common side effects of Docetaxel Injection include:
•
infections
•
low white blood cells (help fight infections), low red blood cells (anemia), and low platelets (help blood to clot)
•
allergic reactions (See "What is the most important information I should know about Docetaxel Injection?")
•
changes in your sense of taste
•
shortness of breath
•
constipation
•
decreased appetite
•
changes in your fingernails or toenails
•
swelling of your hands, face, or feet
•
feeling weak or tired
•
joint and muscle pain
•
nausea and vomiting
•
diarrhea
•
mouth or lip sores
•
hair loss: in some people, permanent hair loss has been reported
•
redness of the eye, excess tearing
•
skin reactions at the site of Docetaxel Injection administration such as increased skin pigmentation, redness, tenderness, swelling, warmth or dryness of the skin
•
tissue damage if Docetaxel Injection leaks out of the vein into the tissues
Tell your healthcare provider if you have a fast or irregular heartbeat, severe shortness of breath, dizziness or fainting during your infusion. If any of these events occurs after your infusion, get medical help right away.
Docetaxel Injection may affect fertility in males. Talk to your healthcare provider if this is a concern for you.
These are not all of the possible side effects of Docetaxel Injection. For more information, ask your healthcare provider or pharmacist.
Call your healthcare provider for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
General information about the safe and effective use of Docetaxel Injection.
Medicines are sometimes prescribed for purposes other than those listed in this Patient Information. You can ask your pharmacist or healthcare provider for information about Docetaxel Injection that is written for health professionals.
I will be going in for my 4th round of Docetaxel here in a couple of weeks. For me, I take 2 tablets of dexametadone 2X per day on the day before, the day of and the day after. That is really good stuff 😊 because I feel great for those 3 days. After that, I take prednisone 2X per day and I usually start feeling tired and a bit under the weather for up to a week afterward, but it’s manageable with OTC pain relief and rest. I just turned 74 and work shifts that are 2 weeks of 12 days/7 days per week on and then 2 weeks off. Like you, I need the insurance. Docetaxel is definitely not a gentle med, but it’s hard to say if it’s easier or harder than Xtandi because it made me swell and my joints were really painful and I “snapped and popped” a lot. It hurt like hell to get up and down from bed. I have none of that with Docetaxel….the side effects are there, just different. Abiraterone was by far my “gentlest” med if there is such a thing with this beast. It still had SEs but they weren’t too bad. I’d suggest that you work with your HR group and get pre-approved for some type of rest period on those days that you may need to renew your stamina a bit. I work for a major oil company and they have been fantastic in accommodating my needs. I’m pre approved to rest for a half hour or so if I have to, but haven’t exercised that option as of yet. You will be surprised as to how those around you at work want to be there for you. Just don’t try to hide stuff….you will be undergoing some aggressive treatments and it’s best to let folks know. I was so worried about my hair falling out…and “people knowing” that at first, I wore this stupid cooling helmet during treatments and my hair eventually “ended up in a pile” on the floor at my barbers anyway. 😱. Those around me at work didn’t give two sh—ts about how I looked,. To the contrary, they offered compliments and support. On another note, I will say that you should definitely get the Suzie ice mitts and booties because they are amazing at knocking down neuropathy. You can get them on Amazon or EBay. Hoping that I didn’t ramble on too much and wishing you the best of luck with your treatments.
Thank you so much for your very comprehensive reply to my inquiry. I am trying to be proactive and searching for as much information as I can. Unfortunately my job situation is complex because I am on a LOA after exhausting the FMLA benefit. This means I have not had any income for the last five months. As much as I understand I do qualify for another unpaid LOA extension provided I present all the paper work as my current LOA is for another medical issue. I am paying my portion of the Insurance premium so that I can still get covered. Actually I know I am lucky to have the private insurance coverage. I have looked into the market place, and there's no way I can afford it. Like you said, very clearly, no one knows how our bodies will react before actually starting treatment. I am currently experiencing a lot of pain coming from my entire rib cage, We -MO and I- are trying to keep it manageable with opioids but getting to the point where I am going to need stronger pain medication. I am getting a PET scan in a few days into the new year to determine the extension of mets and docetaxel dosage. I have been experiencing a very low platelets count for a few months know and that is something the MO will have to take into consideration too.
Again, thanks a lot for your reply and may you and yours enjoy a very Merry Christmas.
If it was me, I’d wait and see how my body reacts to the Docetaxel and go from there. You may be one of those guys who flies right through it with minimal SEs. It’s very common for individuals to continuing working throughout their treatment.
I didn't find docetaxel as difficult as I expected although it isn't fun. I was fortunate to have accumulated enough sick days over the years that I didn't need to work. I had lots of energy on infusion day and the day after. Days 3 to 5 were when the worst of the fatigue hit and I was in bed or on the couch for most of the day. If I were you, I would schedule your infusions for a Thursday and try to take Monday off work. Days 6 to 10 after infusion were increasingly better and by day 10 I was back to normal.
i had minimal side effects of importance. Hair did fall out including eyebrows and lashes. Some fatique that at times was probably difficult to work through tubt it was just a few days. everyone is different my fatique showed up later than most.
i was able to work myway throught t. Keep exercising.
you should be able to handle it and continue to work throughout based on my experience. You will feel physically weaker. No one knew I was doing Docetaxel during the process. Didn’t lose hair because of cold cap.
Everyone is different. I started from a high base health wise.
My experience...like healthunlocked.com/user/Pat... says, I scheduled my infusions for Thursdays. The anti-nausea drug they put in so you don't throw up the taxotere would carry me through Friday, giving me the weekend for the worst of the side effects. By Monday, the worst was "over" and I went about life, working, going to the gym ...Did I take those naps, definitely!
For me, the side effects were cumulative, the 4th hit hard in terms of fatigue. Still, I went to work, the gym...
I am not sure about variations in dosage, for me, the same dosage was planned for each of the six infusions. They did weigh me before each infusion, may be that had I experienced significant weight loss, they would have adjusted the dosage. I have also read on this and other forums where the dosage has been adjusted based on the individual's toleration, or lack of...
To the extent possible, mitigating the side effects may be in part a function of to the extent possible, diet, exercise, managing stress and exercise. I went to the gym often in weeks two and three, focused on hydration, didn't worry about every little thing. Heck, I even travelled to Las Vegas with my wife for a week to watch my daughter to watch my daughter and her college basketball team play in their post season conference tournament.
One can drive themselves into worrisome states with all the literature on our treatments, worst case scenario...Thins statistics, Bell Curve, most will not experience everything the literature says is possible, some will, some won't (standard debbiatine left and right...!). What may be more important than reading through all the side effects is understanding how you and your medial team can mitigate them.
Your oncologist and their office should provide you information about contacting them during and after office hours should you have questions and need assistance, don't hesitate to call though when I called about a rash reaction I was experiencing the old battle axe of a nurse lectured me on thoroughly drying myself off in the groin area, I told her that wasn't the problem, I had long ago and far away learned that!
With those results after SBRT, are you considering a ADT vacation? I'm at SBRT treatment 4 of 5 today. My last PSA was 0.36. Recent PSMA scan identified a small met on my Ischial tuberosity that is being zapped. I am also on Orogovyx and Xtandi. I'll have a January and April appts with the MO. My thinking is if I'm undetectable for 3 or more months I'm going to take a vacation from all meds. Have you discussed similar plans with your MO? If not, can I ask why?
Short story long...when my clinical data met our decision criteria for deciding to go back on treatment, three or more consecutive PSA increases and PSA between .5-1.0 to increases our statistical chance of locating the recurrence, the next part of the decision was with what and for how long.
My thoughts were SBRT and six months Orgovyx. My radiologist supported that . My oncologist favored the SBRT but argued for 24 months of Orgovyx and add Xtandi.
Hmm... we settled on SBRT and 12 months of Orgovyx, only add the Xtandi if Orgovyx did not drop the PSA to undetectable within the first three months and at 12 months, decide whether to continue for the additional 12 months or come off treatment and actively monitor with labs and consults every three months.
We did not add the Xtandi as PSA dropped to undetectable within the first three months. When we met at 12 months I laid out my arguments to come off treatment (I had sent a note through the portal with my thoughts so he had time to think about it).
Radiologist had no issues. She said in the tumor boards the oncologists were all over the map with their recommendations on the length of ADT and supporting reasoning. She also knew I was not walking away but would be monitored every three months and if the clinical data supported it, go back on treatment.
My oncologist supported it also though I know in his heart and mind he wanted the additional 12 months.
Who was right, who was wrong. We'll never know! We can't clone me and run two separate trials...there's no doubt I "fit" the EMBARK trial which argued for the 24 months of ADT+ARI. I read other trials where SBRT + six months of ADT worked...
So, off treatment since late April,, eight months, labs in late January. I of course would like a durable remission, say 24-36 months or more but will take 12-24 months.
Life off ADT is as expected, not that I can do more but what I do I feel better doing it! The reason is obvious, T....I am one of the fortunate ones who for whatever reason has a fairly rapid recovery if T after coming off treatment. I know other aren't and that can be a factor in deciding on "vacations."
Thanks for the reply. I hope you get more than 24 months off treatment. I'm hoping for the same after this SBRT is completed.Coming off the meds is also less taxing on the liver and kidneys, so there is a benefit even if T doesn't return. Maybe why men who choose the chopping block report feeling better than when on the ADT meds.
When you had SRT, you had chemo as well. Did you have a scan(s) that picked up the metastasis? Based on your tumor profile and post surgery report, you would have thought you had a good shot at cure.
When I did triplet therapy in January 17 it was in part based off the C11 Choline scan Mayo did which showed four pelvic lymph nodes involved though no bone or organ.
The triplet therapy wax my third attempt at a cure, the surgery, SRT...
My medical team expressed surprise given my pathology report and surgical notes that I had recurrence. I wasn't, the MSKCC nonogram said I had a 30% chance and the Mx in the pathology report had me thinking hmm, they don't and can't say for sure whether or not there's micro-metastatic PCa..
Unfortunately I was right.
So, I have friends who had surgery by the same surgeon around the same time. They are "cure" and I am profoundly happy for them.
I am trying to manage this as a chronic disease, so far, so good!
Thanks for the explanation. I'm in a similar situation. Just trying to keep this disease chronic. I've had 2 PSMA scans a little over 2 years apart. First one after my Reoccurrence and second this past November. First one was negative for Mets. Second one just identified a small met in my Ischial Tuberosity.Having Zapped right now. Maybe last shot at a long term remission. Otherwise it'll scans, treatment, scans treatment.
I got the bone met biopsied prior to SBRT and having it sent out for genetic testing.
Thank tou for sharing your experience. This going to be my first round of chemotherapy. All I am looking for is to educate myself and to have a plan B. The available literature in the internet on this topic is so broad and cold. I am lucky I found this group where for most part makes me feel welcome and free to reach out for some advice. My visits with my MO with whom I can communicate are so quick and the allowed 20 minutes not nearly enough time to discuss everything I need to discuss with him.
I completed 10 rounds of Docetaxel while working full time (desk job). I was allowed to work mostly from home and went to the office 1 to 2 days per week, which really helped with side effects. I had to start Neulasta for low white blood cell counts. I iced hands and feet to minimize neuropathy but lost my hair. Otherwise, I had minimal side effects. Wishing you the best.
My experience with Docetaxel was that it was the toughest treatment I’ve done so far, and I’ve done a lot, read my profile. Fortunately I had a very understanding employer and worked from home and it was still difficult. When I was in the field visiting accounts it was a grind, I was exhausted and felt like crap. Flulike, brain fog, loss of taste, severe fatigue etc. Then there’s the changes in appearance, hair loss, loss of eyebrows etc. It’s a bit traumatic at first but you get used to it. By the time I hit rounds 4-6 it really kicked my ass. I ended up retiring and going on disability. I was 55 at the time.
For me Lupron was/is much easier, yes it causes fatigue and brain fog and hot flashes but I’ve been able to mitigate with estradiol patches.
I see others who posted that they got through Docetaxel just fine, but that was not my experience and I’ve known some guys in our local PCa group who had similar experiences as mine, just telling it like it is. Yes, for me it was a toxic chemotherapy.
Yes, chemotherapy is always toxic and yes up to 4 cycles it is still tolerable.
I was just wondering if you also received 10 mg of prednisolone or Prednisone per day during your docetaxel chemotherapy?
I decided not to take prednisolone because I realised that in a Finnish study during the docetaxel chemotherapy they didn't receive prednisolone for the hormone sensitive prostate cancer.
I haven't started the chemotherapy yet. MO knows my tolerance to prednisone is zero to none. I am sure he will cine yo with something else to help me with chemotherapy SEs. Thank you.
Is it your early docetaxel chemotherapy? If it is you don't need prednisolone but I am not sure what are the side effects by not taking prednisolone???
My husband's experience was similar to yours, Ed. He did 10 rounds and would have one good week in three, less towards the end. Xofigo and Pluvicto have been much easier to endure. His office has given him a long leash, otherwise he would have had to take medical leave or retire.
My husband had docetaxel. He finished 10 sessions at 85%. This was every 3rd week. He started out at 100% and had a few side effects and after the 2nd session it was decreased to 85%, which he handled well. He had minimal side effects with 85%. His last treatment was December 2022. It kept him stable for only 6 months and then PSA rose again. Best wishes.
I'm an RN case manager. I worked through the chemo and only missed a couple days related to fatigue during the 6 treatments. It's doable, but it does kick your butt.
I thin the response to docetaxel is widely variable. I was really sick two out of 3 weeks of each cycle, while a really good friend never missed a day of work. I hope you fall into the latter category.
When I was 66, I had 6 infusions of Taxotere over 18 weeks plus Lupron for 9 months, followed shortly after with prophylactic radiation of abdominal lymph nodes. My body tolerated the chemo very well. Two days after each infusion, my energy level fell off a cliff to a 5 on a 1-10 scale. Each day it recovered a notch and within a week my energy level was back to normal. Same pattern after each infusion.
Your employment falls under protection from the Americans with Disabilities Act, so your employer is obligated to make "reasonable" accommodations. A reasonable accommodation for a desk job would be working from home at least part of the time. I was able to continue working full time by working from home part of the time.
I got 4.5 years of undetectable PSA from that triplet therapy.
I finished the standard 6 infusions plus prednisone 6 weeks ago. I'm also on xtandi and restarted ADT at infusion 4. Oddly my most energetic day was the day after, likely due to the dexametadone. The next 5 -6 days were the worst as far as fatigue. Almost normal by week 3. Overall, not too bad the first 3 infusions. But it started catching up to me on 4 thru 6.
The most noticeable side effects were hair loss, some finger (will lose most of my fingernails) and foot neuropathy, loss of taste and watery eyes. Blood tests showed borderline anemia. I don't have a formal job (I'm 72) but I do have a bunch of home projects that require physical work and desk work. Was able to keep doing those but and still do crash about 3ish for a good 30-minute nap before an hour or so workout before dinner. I had to force some of the workouts. But once I got started, they were no problem. My workout routine was a Concept 2 rower that has a power meter. My power numbers steadily dropped over the 18 weeks but have started to return the last 3 weeks (6 weeks after last infusion). When not rowing I run and/or cycle, although during the chemo I only did the rowing. The loss of taste has been the most annoying side effect. My appetite never waned but the food all tasted like cardboard. Really had to force myself to eat. That has shown hints of improvement.
My motivation was maintained by the PSA reductions and blood markers (other than the hemoglobin and hemocrit) measured before each subsequent infusion.
With respect to your desk job: I had mostly a desk job before my retirement. You may have late afternoon fatigue, but I believe I could have continued with my job if I had to while undergoing the chemo based on my personal experience.
You have generated many responses. I had six cycles after RARP the year I was diagnosed (2007). It kicked my butt progressively more with each cycle. Took two years to recover back to feeling normal again. The same two years until my PSA began climbing again. So it seems it just kicked the can down the road for two years.
Keep in mind that docetaxel chemo is never curative. So you should weigh the burden of side effects and toxicity against the possible extra time. And you can stop when it is not tolerable. You are very likely to be able to work your desk job at least through most of it. I lost all of my hair with the first dose. Didn’t mind as it was kind of cool as a badge for cancer. That might earn you more accommodation at work. (The hair does come back).
If you develop any early peripheral neuropathy or other serious toxicity you should definitely discontinue any further infusions. The prednisone or prednisolone is optional and only given out of tradition not medical necessity. For me it caused intractable hiccups for a week after infusions. So I stopped it.
Best of luck. Try to make it to Medicare age with your good insurance from work. MB/Paul
Perhaps one can never be prepared to fight this battle but, your input means a lot to me. I am not going to go into my first chemotherapy completely blinded. You are on point when you say it is better to balance QOL vs. the misery to which these poisonous chemicals put you through. I am willing to try it once and if I don't see it beneficial for me to prolong my life when it becomes unbearable with no family or loved ones, why would I?
I had early docetaxel chemotherapy on the recommendation of my first radiation oncologist professor Izard and a board of urologists at my local hospital. My first medical oncologist professor Richard Epstein didn't say anything about the early docetaxel chemotherapy only said that some people live long on ADT alone. Professor Izard then talked to professor Richard Epstein and I received the early docetaxel chemotherapy and I didn't have any major health problems as a result of the early docetaxel chemotherapy. My problems started after cycle 3 or 4 maybe 5 when I asked the registra of professor Joshua (my second medical oncologist after the departure of professor Richard Epstein to China for 5 years). I developed a funny feeling in my feet like I am walking on cushions. I asked the registra what should I do now? She asked me if I could bottom up my shirt and I said yes and she gave me a diagnosis peripheral neuropathy grade 1.
I happily jumped into chemotherapy because I learnt that I may live instead of 2 years long 3 years according to the clinical trials from that time. I remember saying that to my primary care physician or in other words to my GP.
I didn't took prednisolone for only 11 days and I remember that all the burning in my prostate went away. I was researching the docetaxel chemotherapy on the internet and I found a Finnish clinical trial with early docetaxel chemotherapy where the Finnish didn't have prednisolone. Therefore I decided not to have it myself plus I was also running out of money and wanted to save on the cost of the prednisolone. My hostel manager offered me to pay to my prednisolone but I refused it. The chemotherapy section of my hospital was harrassing my because I stopped taking prednisolone after 11 days. Professor Richard Epstein approved that I don't take prednisolone for the current cycle but I continued not taking it without asking him.
Later I had a slightly swollen right ankle and my radiation oncologist professor Izard sent me to go to the emergency department of my hospital at the end of my docetaxel chemotherapy just during the nuclear medicine bone scan and I couldn't find someone to perform the ultrasound to see if I developed deep vein thrombosis or not because of the radiation exposure from the bone scan.
Professor Izard made an agreement with my medical oncologist that he will send me to the radiation oncologist when my PSA started to rise from my PSA nadir of 0.12.
My medical oncologist instead of sending me to the radiation oncologist wanted me that I add Bicalutamide at a PSA of 0.3. I refused to start bicalutamide because one study suggested that if you start bicalutamide when you are castrate resistant at PSA 2 is a best time to add Bicalutamide to the ADT. If you start bicalutamide early like my MO wanted me you only getting added toxicity and extending your life only 3%. I wanted to save money therefore I refused early bicalutamide at PSA 0.3.
I wasn't very clear why my MO wanted me to start bicalutamide early and he never explained me that but I realised from his body language that he is very annoyed with my short no. I also refused to get a whole body CT scan after the completion of my early docetaxel chemotherapy and I only did a nuclear medicine bone scan because my first radiation oncologist professor Izard said that it is good to have.
The young Canadian registra of my medical oncologist said to me that she also would not get the whole body CT scan plus my GP who diagnosed me was also against me radiating myself with full body CT scan after the completion of my early docetaxel chemotherapy.
I didn't get any scans for 4 years until my PSA raised to 1.25 . At the PSA 1.2 I asked for the referral to the radiation oncologist from my GP because my medical oncologist didn't send me to the radiation oncologist.
I received a PSMA pet/ investigational CT scan and to my surprise they didn't find anything except cancer in my prostate with PSMA SUV max value of 14 at PSA 1.25. my prostate was 95% full of cancer according to the SBRT radiation oncologist at Genesis cancer care.
I also asked the registra for a nuclear medicine bone scan and for the fdg pat scan and for a bone density scan before I committed to the SBRT radiation of my prostate. The young registra said that I am putting her into trouble by asking for all these scans. I said to her that I don't want to fry myself with the SBRT radiation if I have any visible metastasis. I didn't have any visible metastasis and I received the prostate SBRT 38 Gy delivered to my prostate and bought seminal vesicles. My radiation oncologist recommended me to also irradiate my pelvis. I refused it because I am not curable and I didn't want to kill my bone marrow with so much radiation.
I am now 2 years away from my prostate SBRT radiation and I had a PSMA pet scan a year ago which confirmed that I still have some residual PSMA SUV max value of 6.5 at PSA 1.1. after that PSMA pet scan a year ago my medical oncologist asked me to get a nuclear medicine bone scan because he was on the hunt for a metastasis wanting to put me on a phase I clinical trial, toxicity study to test for a toxicity of the Astra zeneca new parp inhibitor plus darolutamide.
It looks like I was an outlier. 4 days after my 1st infusion I hit a wall. I blacked out, fell and broke a rib. My radiation caused neuropathy lit up like a 4th of July fireworks show. I was barely able to walk and was wheelchair bound as my wife to me to the ER to be admitted with Nuetropenic fever. I spent 4 days in the hospital and received 7 bags of IV antibiotics. I was able to walk out though thankfully, although the neuropathy continues. I haven't seen anybody mention having Thrush?? The open sores in my mouth were horrible and took weeks to heal. So, some suffer more than others. Hopefully, if you go that route you breeze through it!
Hi ennnghh, I know a few fellas that were on that is a rough ride for sure and I can say this, your attitude about yourself is EVERYTHING, you must stay motivated and positive regardless of what others may say. You are your best support system because there will be very low energy levels and likely weight loss. Mind your diet avoid acidic foods and comfort foods, high protein and lots of green veggies, red fruit like water melon, cherries, passion fruit, blue berries are all anti oxidant. Pure bread while grains, and you need to be active around positive people. Hope that helps, as u can tell in not a fan of chemo or radiation. My apologies if this didn't help, but in honest about health and was fortunate not having to go through that. My reddish prostatectomy exposed cells out of the capsule so I've been on androgen therapy 15 years now.
my hubby did taxotere in 2017 and 2022. . He was retired but was a cancer center volunteer through his first 6 rounds. He tolerates chemo well but there is fatigue as it compound
In the front half of 2024 had six docetaxel infusions spread over 18 weeks. I experienced all the side effects especially extreme fatigue (couldn't even hold my cell phone). First two weeks after each infusion are the worst. You recover just in time to get knocked on your butt all over again. My lingering side effect is peripheral neuropathy. Overall, had a difficult time, spent a lot of time in bed. I'm 74 y/o male, prostate removed 2015, entering my tenth year in this battle. Good Luck!!
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