I may be starting Chemo in a couple of weeks? Meeting with MO after latest PSMA PET Scan, showing probable Apalutamide/Lupron failure. After a 3 month rise from 0.1 to 0.6, he ordered a scan & hinted at Chemo next. Found resolution of old mets. but some new ones.
At any rate, although I am 74, I run/jog at least 5 times/week & lift weights at least 3 times per week. Will Port placement limit these activities partially or entirely, especially weights?
Thanks for any feedback!
My port placement hasn't affected my activity level, and I walk, cycle, ski, and lift weights. The device sits on a rib (so it has a firm foundation when the needle is inserted) and the tube runs over my clavicle and then enters the jugular vein. When I had the procedure done they said that surgeons tend to want to use the subclavian vein but they thought it was more risky since you have to blindly stab it while the jugular vein is visible during the procedure.
Very informative! My wife, a retired Hospital Dietitian, says she thought they have some kind of infrared device to locate the veins? Did they use anything like that?
Thanks for the quick replay!
They used ultrasound to guide the tube down the jugular vein until it meets the vena cava below the heart. They might have confirmed with an x-ray, I don't remember. They were a bit startled that I do shoulder presses, that's probably the only thing to be careful not to overdo.
I didn’t use port. Started chemo with a port but a nurse told we could continue the infusions without it.
Had my first chemo on January 6th. No port for me.
They just did a standard IV drip into the cephalic vein (the large vein above the wrist in line with the forefinger and thumb).
No issues for me with that one. Any big juicy blue vein should be fine if you have them.
Yeah, I have the big juicy veins, too, & am slim so hopefully they will consider the wrists or arms? Thanks, for the info! Would you mind sharing your overall side effects with Chemo?
Only one session so far.
I’ve had most of the expected side effects. Mostly mild. The most annoying is the taste buds being whacked, and my beard shedding hairs. Interestingly no loss of head hair or eyebrows. Some slight shedding of arm hairs and chest.
Here’s a day by day log I kept for the first two weeks after the session.
Day 1 Sat 01/07 Diarrhea DizzyTongue felt weird
Day 2 Sun 01/08 Toes tingled a little
Day 3 Mon 01/09 Serious insomnia Sunday into Monday.Agitated, restlessReally tired from lack of sleepVery frequent urination, as often as every 10 minutes all night long. Very small amounts of urine though
Day 4 Tue 01/10 Sleep troubles 5 hrs Headache Dry mouth frequent urinating
Day 5 Wed 01/11 Sleep 6 hrs Really tired feeling, weak Dizzy Frequent pee Major NAUSEA (went right away after taking the anti-nausea pill they gave me)
Day 6 Thu 01/12 Feeling pretty good today
Day 8 Friday 01/13 Itchy scalp Really dry mouth
Day 9 Sat 01/14 Rash on head Sore throat Temp 99.3 Water tastes weird Dry mouth
Day 10 Sun 01/15 Rash on head worse Water and some foods taste weird Driest mouth yet.
Day 11 Mon 01/16 Rash on head still Taste off
Day 12 Tue 01/17 Rash still bad, saw dermatologist, got 2.5% hydrocortisone Taste off
Day 13 Wed 01/18 Rash improvingTaste off
Day 14 Thur 01/19 Taste off Some hairs pulled out of beard
Day 15 Fri 01/20 Taste off More hairs pull out of beard Some hairs pull out of arm
Be sure to check out AlvinSD tips on going through chemo. If I’d been better about icing my mouth and beard I might have avoided the taste and hairs falling out.
Wow, great detail but several SE's. Will be interesting to see if they get better (hopefully) or worse? I have lost quite a bit of hair on Lupron & Apalutamide & have male pattern baldness, anyway. However, lower T tends to help with that, it seems?
I imagine some of them will get worse as the cumulative effect of the chemo poison takes its toll on various non-cancerous cells. The only one that was really miserable was the nausea on Day 5, and a single dose of the anti-nausea medicine knocked that back really quickly.
Male pattern baldness does stem from the conversion of testosterone to DHT, which stacks the hair follicles, so lowering Testosterone does help stop that process. I noticed a significant increase in the thickness of my scalp hairs and light hair regrowth in places the hair had vanished from after a few months of ADT.
Chemo hair loss is a different story, chemo goes after fast, growing cells, like cancer, which includes hair cells, fingernails, and even skin.
I had six cycles of Docetaxel over this summer. They did not give me a port. They used veins in my forearm with a standard IV catheter. I had them rotate which arm was used each time to give my veins on each side a rest from the chemo.
I asked the nurses when they use a port and when they don’t. They said that since I have good veins, was only getting chemo with one drug every 3 weeks and was getting a drug (Docetaxel) which was not a vesicant (capable of causing tissue damage if it leaks out of the IV site) a port is generally not used. They use ports for people getting multiple drugs often, if the patient has poor veins or for some drugs (because of their characteristics) they need to quickly enter the circulation and get diluted.
I was glad to not need a port because I didn’t want the risks associated with a potential port infection.
Great info., Alvin! I am slim & have great veins but not sure what my MO's infusion room's policy is. I will find out, obviously.
Would you mind sharing what kind of side effects you experienced with Chemo overall?
Thanks for your great help!
I had fatigue and hair loss as my main side effects. Here’s a detailed post I did about the various side effects and what helped me:
My first infusion, they used a vein, that is what they were going to do the whole time. but the vein got infected so I end up with a port for the rest of mine. It did not bother me, but then it got infected and it needed to come out right after I my last infusion. best to you.
Thanks, for your info. Some say having a port is more cause for infection. Go figure.
Would you mind sharing your overall side effects with Chemo?
Anecdotal but this month marks 3 years with a port. Convenient for me and nurses for 6 chemo infusions in 2020, 3 chemo infusions end of 2022, Zometa every 3 months and blood draws. No complications.
Here goes, I have quite a bit of information on my profile. I did not get nauseous, but it wiped me out for a few days after I went off the steroids that they gave me. My tongue got very rough afterward, even after I chewed on ice. It kept dragging me down each infusion until the last one my Hemoglobin was down to about10.6 and I could not do steps. I was able to keep somewhat active. I since have Neuropathy on the bottom of my right foot. some lymphoedema here and there, mostly in my legs. I have kept myself active since, and hopefully I can keep the cancer at bay for a number of years. God only knows. again you can look on my profile for more detail. (I lost my hair)
The best to you as you start the journey. Everyone is different, some men chemo does not hardly affect them. others it effects more than what I experienced.
thanks< Keith
My port is on the right side…for me it’s preferable because the seatbelt on the drivers side crosses over the left shoulder. When I’m in the passenger seat it is uncomfortable. Other than that, it takes a few weeks to heal and doesn’t limit me in any way
Great point! I didn't even of that? Would you mind sharing your overall side effects with Chemo? Thanks, much!
In 2018 I did not need a port, with this round every 3 weeks I still do not need a port, thank God for that, it is working so far but time will tell and could be doing this for a year or more.
Looking at you Bio it doesn't appear you had significant SE's of the Chemo, either? Is that the case? I definitely don't want a port, if I can avoid it! Thanks!
Last night could not sleep, took Tylenol this morning so I can make it to my cats vet, he has cancer also. The chemo raises havoc with your digestive system, body aches and constipation. The infusion goes well, it is the week after that is the pits, I do try to drink water.
My wife is a Dietitian, so hopefully she can help me with the digestive issues? I eat a lot of yogurt for possible constipation, from the Apalutamide, already. I am prone to heart burn, too, & hopefully this won't make it worse?
Thanks for sharing & hope the best for you & your kitty!
Thank you, my best to you.
No, not at all. I run daily, exercise including weight lifting and have my port since five years. I forgot having it - don’t worry.
Our oncologist didn’t even give us a choice, just scheduled us for ports as soon as we were scheduled for chemo. We both love our ports! (I have breast cancer, and husband advanced prostate cancer.) So convenient, and no discomfort. Mine is on the left as my breast cancer is on the right, and his is on the right which is the preferred side at our facility. Minimal tenderness first day or two. No discomfort for pokes at all. He has had his since April 2021 and I have had mine since August 2022. He has used it for 14 cycles of chemo, and monthly Zometa. I have used it for chemo and I frequently need extra IVs and magnesium. I can’t imagine ever taking it out!
Wow, read your husband's Bio & you are both real troopers! You both show how resilient you must be to keep a positive attitude! It is amazing how Breast cancer & Prostate cancer share similarities. From my understanding treatments of BC have helped aid in PCa treatment strategy.
It is great to know that if I have to have a port, it is tolerable.
Thanks so much for the report & best of luck to both of you!
Have finished cycle three of Docetaxel with cycle four next week.They put a cannula in the top of my hand for each session and take it out when finished.
I've used the cold cap system for each session and no hair loss so far, but that may change, who knows.
Main side effects so far:
- Taste is bad for about 8-10 days. Some foods like bananas taste horrible and I avoid them. On the other hand cold Sprite tastes great.
- Fatigue: Bad fatigue for about 5 days but I try to walk each day. On day 5 I'm well enough to drag myself to the gym annd by day 10 I'm feeling pretty good. My approach is to remain active although there is a constant level of fatigue and if I over exert myself I'll feel it next day. For example I'm on holidays skiing this week but mainly skiing half days and taking it easy.
I gave up work after cycle 2 and will back when it's done. It was hard to jump in and out and my employer was very good about it.
The week before my last chemo I did two heavy weights CrossFit sessions. But it threw my liver enzyme tests off ( AST and ALT) and I had to postpone chemo by a week. Be aware of this prior to your blood tests. You can look it up as it is a documented phenomenon.
google.com/amp/s/blog.insid...
Best wishes!
I had my port put in on the right side of my chest, and no other option was given for its location, the tube from the port goes into a vein in the chest. The only thing I had to be careful about was when doing bench presses I had to be careful not to bounce the bar off my chest or I’d risk damaging the port that was placed just under the skin. So I could either be careful about that or just use dumbbells instead.
And I would definitely go with a port, a friend of mine, fellow warrior, had the veins in his arms get burned up pretty bad from docetaxel, it’s pretty nasty chemo, I experienced hair loss, neuropathy, my mouth peeled inside, fingernails weakened and became loose, flu like feeling and fatigue for a week or so about 3 days after infusion. I also had to get infusions to stimulate white blood cell count. That was over eight years ago and I’m still here, so it’s worth it but you’ve got to have the mindset of “embrace the suck”.
Ed
Yeah, I am afraid of being limited on the heavy weights to keep from developing "man boobs" from the Lupron. I was able to keep them away, 4 years ago when I was on it for 2.5 yrs. How long ago did your friend have the Chemo, because they may improved the cocktail since then but I don't know that? Maybe someone can comment?
I am ready to "embrace the suck" after RALP, EBT, Cyberknife & now Apalutamide & Lupron again, over the past 5 years.
Thanks, a lot for the detail, Ed, & best of luck!
it was 4-5 years ago but I doubt that it’s changed, just don’t bounce the bar on the port area. For me, I don’t really care about the man boobs, I look at other guys on the beach and my cup size isn’t bad compared to them, lol. At this point that’s a trivial thing to worry about for me.
Ed
I had 6 sessions of chemo (taxotere) several years ago, and here are a few things I learned in the process:
Re: Port -- listen carefully to their reasons for wanting to do a port (if that's what they are recommending to you). I did not have one, and was never even asked about it. Likely. this may have been true because in my case, my veins were easily accessible. I have always suspected a port is done mainly for THEIR convenience, and something you can avoid, unless your veins are difficult to access , and/or you have an aversion to needles.
Hair: I lost all of mine -- head , eyebrows, pubic, even my eyebrows and nose hair. Didn't bother me -- except even now (years later) I have to blow my nose frequently.
Fatigue: I would describe my general level of fatigue as "profound" -- and I just gave into it, sleeping whenever I was tired. This was easy for me because I had no work obligations.
Food: the chemo certainly affected my appetite, but I tried hard to avoid excess fat and sugars in my diet -- i.e. about 95% vegetarian.
NEUROPATHY: I came out of the chemo process with a bad case of neuropathy (feet). This is my biggest regret since there was an ice machine in the chemo room; I was asked if I wanted ice on my feet and hands, but no one told me why the ice might be helpful.
Summary: there are many worse things in life than chemo, and it is a major weapon in the fight against your cancer. Good luck...............................
My wife is vegetarian & I only eat red meat once per week & a turkey sandwich daily. Otherwise, a HUGE salad every night. I have lost quite a lot of hair already due to Lupron & Apa & am pretty bald, anyway.
Will be real concerned about neuropathy & will try to guard against that.
Thanks so much for the insight & info. & best of luck to you in your battle!
I had chemo without port. If you're in shape, you may not need a port.
Peter, can you be more specific on "in shape", ie. low BMI, physically fit, etc. Thanks!
If I have Chemo, it will be 6 infusions, 3wks. apart. Will find out next week from the results of my PSMA PET, last week, showing more mets., even though on Lupron & Erleada. My veins are good, so I am hopeful.
Any tips on how to survive the SE's of Chemo. I am 75, also, with good blood values.
Yes, fit, and most important, good veins. You only need 6 infusions, each three weeks apart, right? I'm 75, may start second line chemotherapy soon, and I think I still can do it without port.
Chemo options when Stage 4 Gleason 8 
Chemo & ADT slow
Things have taken a turn for the worse
Chemo not working for bone mets
Chemo treatment/What happens after chemo? 
