REVIEWS DEALS BIKESHOPS TRAILS

Riding post cancer - anyone have an infusion port?

2707 Views 9 Replies 4 Participants Last post by Harold, Dec 2, 2021

jcharles00

Discussion Starter · Nov 30, 2021

Hey all,
I'm not sure where to put this, but I figured this forum made sense since it's the general type of riding I do.

Anyway.. I found out I had cancer in Aug. Did treatment over the last few months and am just hanging out until we can do another bone marrow biopsy to see if we got it all. The chemo/antibody therapy effects have mostly passed, and I'm able to get on the trainer a bit.. I miss riding outside, especially in the woods, and am thinking about getting back out, despite the weather. (I'm in Indiana)

I'm really interested in hearing if anyone out there still has their infusion port and rides. I fall occasionally (if you're not falling, you're not pushing hard enough! ha) and am a little concerned about landing on the port which is located just below my collarbone.

[As an ironic aside, the last mountain bike ride I did was when we knew my bloods were showing something weird and prob cancer, but no official diagnosis.. I got my foot stuck under a root and went OTB while moving pretty quick. Once we got the diagnosis, my oncologist said I was lucky that I didn't burst my spleen in that fall - it was 2.5X normal size as a result of the cancer.]

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Harold

· #2 · Nov 30, 2021

I didn't go anywhere near my bike outside while I had my port (a central veinous catheter type).

Because of the type of cancer I had and the effects of my treatment on my heart, I was not cleared for strenuous activity until long after the port was gone. And when I was cleared to ride on the trainer, I had to wear a HRM and keep my heart rate below 150bpm. And given how much the various drugs affected my heart, I could hit 150bpm walking across the house to go to the bathroom, so doing that on the trainer was EXTREMELY light exercise.

I was also a very high bleed risk, so riding outside was a hardcore no for a long time. I didn't ride for over a year. And of course, my first ride out, I did crash (which is actually not common for me) and my wife raised hell with my oncologist at my next appt (he chuckled and suggested swimming).

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CLDSDL43

· #3 · Nov 30, 2021

Glad you are past the chemo part. I had cancer 15 years ago but didn't have port so I can't really speak to that. My wife is currently mid chemo with a port. She's a pretty active one as well but limits it to walking for now.
We had a friends dog get out last weekend and were frantic trying to catch it in a high traffic area before it got hit. At one point she did a full dive in a yard to try to grab it and I about freaked out. Scared her as well because she landed on it. Turned out okay.
As far as biking shes staying off and I probably would limit myself to indoor trainer(sucks) as well if I had have had a port.
Best of luck to you with all and hope you bounce back quickly. I was wiped out after 3 months of treatment but strength/energy came back fairly quick.

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jcharles00

Discussion Starter · #4 · Dec 1, 2021

Harold said:
I didn't go anywhere near my bike outside while I had my port (a central veinous catheter type).

Because of the type of cancer I had and the effects of my treatment on my heart, I was not cleared for strenuous activity until long after the port was gone. And when I was cleared to ride on the trainer, I had to wear a HRM and keep my heart rate below 150bpm. And given how much the various drugs affected my heart, I could hit 150bpm walking across the house to go to the bathroom, so doing that on the trainer was EXTREMELY light exercise.

I was also a very high bleed risk, so riding outside was a hardcore no for a long time. I didn't ride for over a year. And of course, my first ride out, I did crash (which is actually not common for me) and my wife raised hell with my oncologist at my next appt (he chuckled and suggested swimming).

Oh man - The heart rate limitation sounds rough. I hear you on the bleed risk. My platelets were very low before and during treatment. I never had any problems, but the oncologist was concerned. I guess a lot of people get sepsis from little things.. one guy in my support group got it from an infected cuticle!

How far out from treatment did you have your port removed? I feel weird about it.. Oncologist hasn't mentioned taking it out, and my flavor of cancer (hairy cell leukemia) always comes back eventually.. I hate to have it pulled and then put back in later.. but that could be 15 years down the road.

CLDSDL43 said:
Glad you are past the chemo part. I had cancer 15 years ago but didn't have port so I can't really speak to that. My wife is currently mid chemo with a port. She's a pretty active one as well but limits it to walking for now.
We had a friends dog get out last weekend and were frantic trying to catch it in a high traffic area before it got hit. At one point she did a full dive in a yard to try to grab it and I about freaked out. Scared her as well because she landed on it. Turned out okay.
As far as biking shes staying off and I probably would limit myself to indoor trainer(sucks) as well if I had have had a port.
Best of luck to you with all and hope you bounce back quickly. I was wiped out after 3 months of treatment but strength/energy came back fairly quick.

Thanks! treatment wasn't too bad for me. 5 days in a row, about five hours at a time for the chemo, then the antibody therapy was one 7 hour session a week for a month. Glad to have it behind me though. hope it sticks.

I can get the anxiety around chasing the dog. I felt really weird about the port for a while. I had a bad hospital stay that gave me something like PTSD, and I freaked out whenever my wife touched the port. (and sometimes when I touched it!) feeling better about it now. quit hurting and itching and feels pretty solid. I think I'd still hate to fall on a stump or something and crack the plastic, or yank the needle out of the blood vessel or something.

Hope you're doing well, and your wife recovers quickly!

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Harold

· #5 · Dec 1, 2021

jcharles00 said:
Oh man - The heart rate limitation sounds rough. I hear you on the bleed risk. My platelets were very low before and during treatment. I never had any problems, but the oncologist was concerned. I guess a lot of people get sepsis from little things.. one guy in my support group got it from an infected cuticle!

How far out from treatment did you have your port removed? I feel weird about it.. Oncologist hasn't mentioned taking it out, and my flavor of cancer (hairy cell leukemia) always comes back eventually.. I hate to have it pulled and then put back in later.. but that could be 15 years down the road.

I honestly don't remember exactly when I got my CVC removed. I received chemo for roughly 9mo, and it was removed some time after that. I had it somewhere close to a year.

Mine was not the type of port that goes under the skin, either. A CVC is accessed externally, so you have a big dressing at the entry point to maintain. Mine had 2 lumens (access points) that dangled from my chest. Snagging them was definitely a concern. This is basically what I had.

Mine was a touch different, though. I didn't have clamps on mine. The ends were little valves that opened when something was attached to them (same threads as are on the end of syringes and fluid pumps and stuff, so easy peasy). They had to be flushed with an anticoagulant pretty frequently because they could clog. had one clueless hospital that refused to flush them with the correct stuff, they clogged up, and then they had to use even stronger anticoagulants to open them back up again. idiots.

I also got sepsis once when the nurse didn't properly clean the ends before attaching a syringe. that was fantastic.

I had acute myeloid leukemia. if you can't get rid of it, it kills you pretty quickly. I've been in remission for almost 13yrs now. it could still come back, but putting a new port back in would be the least of my worries if it does. the cancer and the treatment pretty well wrecked my blood for awhile. I had periods of time where white blood cells could not be found in my blood. I had periods of time where my bleed risk was astronomical. wherein I could bleed out from a paper cut. I still have chronically low platelets, but I'm no longer a risk of bleeding out. I just bleed longer than most.

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CLDSDL43

· #6 · Dec 2, 2021

jcharles00 said:
Oh man - The heart rate limitation sounds rough. I hear you on the bleed risk. My platelets were very low before and during treatment. I never had any problems, but the oncologist was concerned. I guess a lot of people get sepsis from little things.. one guy in my support group got it from an infected cuticle!

How far out from treatment did you have your port removed? I feel weird about it.. Oncologist hasn't mentioned taking it out, and my flavor of cancer (hairy cell leukemia) always comes back eventually.. I hate to have it pulled and then put back in later.. but that could be 15 years down the road.

Thanks! treatment wasn't too bad for me. 5 days in a row, about five hours at a time for the chemo, then the antibody therapy was one 7 hour session a week for a month. Glad to have it behind me though. hope it sticks.

I can get the anxiety around chasing the dog. I felt really weird about the port for a while. I had a bad hospital stay that gave me something like PTSD, and I freaked out whenever my wife touched the port. (and sometimes when I touched it!) feeling better about it now. quit hurting and itching and feels pretty solid. I think I'd still hate to fall on a stump or something and crack the plastic, or yank the needle out of the blood vessel or something.

Hope you're doing well, and your wife recovers quickly!

Thank you. She's a tough one but chemo is a little rough and some tough surgeries ro come.
You hang tough. Sucks but have it behind you soon!

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CLDSDL43

· #7 · Dec 2, 2021

Harold said:
I honestly don't remember exactly when I got my CVC removed. I received chemo for roughly 9mo, and it was removed some time after that. I had it somewhere close to a year.

Mine was not the type of port that goes under the skin, either. A CVC is accessed externally, so you have a big dressing at the entry point to maintain. Mine had 2 lumens (access points) that dangled from my chest. Snagging them was definitely a concern. This is basically what I had.

Mine was a touch different, though. I didn't have clamps on mine. The ends were little valves that opened when something was attached to them (same threads as are on the end of syringes and fluid pumps and stuff, so easy peasy). They had to be flushed with an anticoagulant pretty frequently because they could clog. had one clueless hospital that refused to flush them with the correct stuff, they clogged up, and then they had to use even stronger anticoagulants to open them back up again. idiots.

I also got sepsis once when the nurse didn't properly clean the ends before attaching a syringe. that was fantastic.

I had acute myeloid leukemia. if you can't get rid of it, it kills you pretty quickly. I've been in remission for almost 13yrs now. it could still come back, but putting a new port back in would be the least of my worries if it does. the cancer and the treatment pretty well wrecked my blood for awhile. I had periods of time where white blood cells could not be found in my blood. I had periods of time where my bleed risk was astronomical. wherein I could bleed out from a paper cut. I still have chronically low platelets, but I'm no longer a risk of bleeding out. I just bleed longer than most.

Dang... Rough stuff there. Best to you.

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joeduda

· #8 · Dec 2, 2021

jcharles00 said:
Hey all,
I'm not sure where to put this, but I figured this forum made sense since it's the general type of riding I do.

Anyway.. I found out I had cancer in Aug. Did treatment over the last few months and am just hanging out until we can do another bone marrow biopsy to see if we got it all. The chemo/antibody therapy effects have mostly passed, and I'm able to get on the trainer a bit.. I miss riding outside, especially in the woods, and am thinking about getting back out, despite the weather. (I'm in Indiana)

I'm really interested in hearing if anyone out there still has their infusion port and rides. I fall occasionally (if you're not falling, you're not pushing hard enough! ha) and am a little concerned about landing on the port which is located just below my collarbone.

[As an ironic aside, the last mountain bike ride I did was when we knew my bloods were showing something weird and prob cancer, but no official diagnosis.. I got my foot stuck under a root and went OTB while moving pretty quick. Once we got the diagnosis, my oncologist said I was lucky that I didn't burst my spleen in that fall - it was 2.5X normal size as a result of the cancer.]

I had the powerport (AML) for about 2 years located similar to yours it sounds like. I rode with it in for about a year, my limiting factor of riding outside initially was my low platelet count, not the port. Afraid of internal bleeding in the event of a crash till my blood counts started to normalize. Good luck in your journey, stay active even if its just walking. Really helped me mentally, and staved off the fatigue.

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jcharles00

Discussion Starter · #9 · Dec 2, 2021

Harold said:
I honestly don't remember exactly when I got my CVC removed. I received chemo for roughly 9mo, and it was removed some time after that. I had it somewhere close to a year.

Mine was not the type of port that goes under the skin, either. A CVC is accessed externally, so you have a big dressing at the entry point to maintain. Mine had 2 lumens (access points) that dangled from my chest. Snagging them was definitely a concern. This is basically what I had.

Mine was a touch different, though. I didn't have clamps on mine. The ends were little valves that opened when something was attached to them (same threads as are on the end of syringes and fluid pumps and stuff, so easy peasy). They had to be flushed with an anticoagulant pretty frequently because they could clog. had one clueless hospital that refused to flush them with the correct stuff, they clogged up, and then they had to use even stronger anticoagulants to open them back up again. idiots.

I also got sepsis once when the nurse didn't properly clean the ends before attaching a syringe. that was fantastic.

Yikes! I was very afraid of those things. When I had the port put in, there was an intern who had to read me a "risks" document, and it made it sound like the longer I had the thing past a week, the dramatically more risk I was in of it getting infected. Knock on wood, I've been trouble free so far. Only once did they forget to flush me, but that was when I was in weekly, so not a problem. One of the nurses told me that she had someone who went two years without a flush because they weren't given aftercare instructions. can you imagine?

Harold said:
I had acute myeloid leukemia. if you can't get rid of it, it kills you pretty quickly. I've been in remission for almost 13yrs now. it could still come back, but putting a new port back in would be the least of my worries if it does. the cancer and the treatment pretty well wrecked my blood for awhile. I had periods of time where white blood cells could not be found in my blood. I had periods of time where my bleed risk was astronomical. wherein I could bleed out from a paper cut. I still have chronically low platelets, but I'm no longer a risk of bleeding out. I just bleed longer than most.

Congrats on the remission! that's great!
I definitely got off easy with the type of cancer I got. the "always comes back" thing sucks, but symptoms were pretty easy and treatment is short and very effective for most.

joeduda said:
I had the powerport (AML) for about 2 years located similar to yours it sounds like. I rode with it in for about a year, my limiting factor of riding outside initially was my low platelet count, not the port. Afraid of internal bleeding in the event of a crash till my blood counts started to normalize. Good luck in your journey, stay active even if its just walking. Really helped me mentally, and staved off the fatigue.

Yep, powerport is what I have too. Glad to hear that you were able to get out and ride with it without problems. I hear you on staying active. I'm trying my best, but I definitely feel the covid-shut-in lifestyle dragging me down. trying to stay on top of stretching routines and getting out for walks between trainer rides.

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Harold

· #10 · Dec 2, 2021

jcharles00 said:
Yikes! I was very afraid of those things. When I had the port put in, there was an intern who had to read me a "risks" document, and it made it sound like the longer I had the thing past a week, the dramatically more risk I was in of it getting infected. Knock on wood, I've been trouble free so far. Only once did they forget to flush me, but that was when I was in weekly, so not a problem. One of the nurses told me that she had someone who went two years without a flush because they weren't given aftercare instructions. can you imagine?

Yeah, the longer they're in, the greater the chance for complications for sure.

I had to have mine replaced once because of early mishandling. Anyone who was going to take care of it was supposed to take a whole class on how to care for it. My mother-in-law took the class, but when it was her turn to flush it, she accidentally removed one of the valves with the syringe she was trying to remove. That contaminated it, so I had to go in and get it replaced. That process was a little bit scary, because I was awake for the whole thing. But it actually wasn't bad.

There was an exterior panel of sorts that they used to secure the thing in place, and they just sutured it to the skin. THAT was a pain in the ass, because the sutures migrated and fell out eventually. So I had to get the thing reattached several times. That left some gnarly scars on my chest.

My understanding is that the CVC is the port of choice when it needs to be accessed FREQUENTLY (up to several times a day for me, especially at first), but that other ports are more desirable if they need to be accessed less frequently and/or they need to be left in for longer. The other part is that it seems like better hospitals use the CVC more often. MD Anderson gave me mine, and they're pretty cutting edge.

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