Body movement to porta-cath area

Craig_Griffin

I get very little information from any medical personal about my porta-cath. It is supposed to stay in for 1 more year before it can be removed (in the event of a cancer reocurrance). Part of my recovery deals with getting exercise. I force myself through it, although my body fights it all the way. When distance walking (1/2 hour a day) I get tingling sensations and muscles tightening as if in resistance. Part of my solution is to resume playing tennis, which I did very intensely before cancer (13 months ago). My port is a double wide or "twin" port. Here are the questions: How often can I expect the port tube (that goes to the heart artery) to flex in a repetative motion that stretches it out and then recoils it back to the normal position? (happens during a tennis racket swing) What bad things could possibly happen through doing this? I find it difficult to only walk for exercise, and I must admit that right after my 3rd chemotherapy last July I met with some other players and hit tennis. which felt great, and which I hadn't done for months. My goal is to try and get proper exercise, and also to try and "cut through" the neuropothy and lack of balance that I am left with after months of chemo and radiation. Thank you, Craig.

zahalene

this is not to be taken as medical advice....
but I have to tell you....
I did not have a port but I had a subclavian tube which also goes into a major vein under the collar bone. It then has an extension to the outside of the body via a small tube with a sealed cap in the end through which needles are inserted for infusion of chemo drugs.
My doctor was VERY stern with me about exercise, and even using my right arm (the tube was on the right side). He said if the inner end of the tube got pulled out of the vein I would experience serious and dangerous bleeding and I should put pressure on the area and get to the ER ASAP! Well, all went well and I had no problems with my tube...however, several years later my mother had the same type of tube for treatments of another sort, and hers DID bleed out and if she had not already been in the hospital we would have very likely lost her from that bleeding episode.
INSIST that your doctors be straight up with you about your port and how you should use it and treat it and learn to live safely with it.

Craig_Griffin

zahalene said:

this is not to be taken as medical advice....
but I have to tell you....
I did not have a port but I had a subclavian tube which also goes into a major vein under the collar bone. It then has an extension to the outside of the body via a small tube with a sealed cap in the end through which needles are inserted for infusion of chemo drugs.
My doctor was VERY stern with me about exercise, and even using my right arm (the tube was on the right side). He said if the inner end of the tube got pulled out of the vein I would experience serious and dangerous bleeding and I should put pressure on the area and get to the ER ASAP! Well, all went well and I had no problems with my tube...however, several years later my mother had the same type of tube for treatments of another sort, and hers DID bleed out and if she had not already been in the hospital we would have very likely lost her from that bleeding episode.
INSIST that your doctors be straight up with you about your port and how you should use it and treat it and learn to live safely with it.

Careful with the porta-cath
zahalene, Thank you for sharing your experience with this. Part of my problem is that the worst possible scenario unfolded during my fight with cancer, as if stage 4 cancer wasn't enough in itself. My group health insurance plan at work was dropped 2 months into my cancer treatment. The new insurance company of course threatened me with the dread "pre-existing" condition. As a result I have had 2 insurances, and 3 different hospital systems and doctor teams in the last year. I hate to say it but I felt I could get a more reliable answer on this site, than listening to any doctor who may wonder what could be so important about a particular sport activity in light of the overall scheme of being a cancer patient, in other words don't I realize that as a cancer patient I am fortunate enough to have any good news period? (Such as being in remission right now) Perhaps they are right. Even so, if that tube ever slips out I will know what to do, with your helpful advice of course. -Craig.

slickwilly

Craig_Griffin said:

Careful with the porta-cath
zahalene, Thank you for sharing your experience with this. Part of my problem is that the worst possible scenario unfolded during my fight with cancer, as if stage 4 cancer wasn't enough in itself. My group health insurance plan at work was dropped 2 months into my cancer treatment. The new insurance company of course threatened me with the dread "pre-existing" condition. As a result I have had 2 insurances, and 3 different hospital systems and doctor teams in the last year. I hate to say it but I felt I could get a more reliable answer on this site, than listening to any doctor who may wonder what could be so important about a particular sport activity in light of the overall scheme of being a cancer patient, in other words don't I realize that as a cancer patient I am fortunate enough to have any good news period? (Such as being in remission right now) Perhaps they are right. Even so, if that tube ever slips out I will know what to do, with your helpful advice of course. -Craig.

ports
Craig. I agree with Zahalene. I had the same port as you. I don't think I would be going out of my way to cause stress on the lines. I did work with weights on my bench and with my elbows supported for curls. Walking and stretching the muscles, legements ect will come with time. It seemed like the steroids I was on during my chemo treatments really balled things up. I finally had the port removed early as I wanted to go back to work. I didn't think working in a prison with a port was a good option as we were always breaking up fights. Best of luck. Slickwilly

Craig_Griffin

slickwilly said:

ports
Craig. I agree with Zahalene. I had the same port as you. I don't think I would be going out of my way to cause stress on the lines. I did work with weights on my bench and with my elbows supported for curls. Walking and stretching the muscles, legements ect will come with time. It seemed like the steroids I was on during my chemo treatments really balled things up. I finally had the port removed early as I wanted to go back to work. I didn't think working in a prison with a port was a good option as we were always breaking up fights. Best of luck. Slickwilly

Thanks for reply
Slickwilly, Thank you for your thoughts. I also may want to get my porta-cath out early. But it probably won't happen, since I found having the big "C" allows mainly for necessities, not what might be convenient. I am amazed at the type of comments so far. I began soul searching about protecting the port after an incident nearly 2 weeks ago. I still have a black and blue welt on my chest three inches away from my port. It happened when playing tennis doubles with a person that I hardly know. We were both close to the ball, and both swung at it. Somehow the edge of his racket hit me directly in the chest at full force. The hit was perfectly centered on my port, except that it was 3 inches lower. The black and blue mark is 1 inch wide and about 5 inches long. It is still there today. I have walked every day since then for my exercise.

About the steroids affecting the muscles, that could be the case. My chemo was Cisplatin, 5-FU, and Taxotare. After each treatment I was given a Neupogen (I think) shot to restore the white blood cells. On one occasion I was given the Nuelasta shot, the strongest one. It sent my white blood cell count from 1.0 to 32 within about 5 days, which is about 5 times too high. That gave me a migraine headache where I couldn't talk, and I went to the emergency room. They gave me a few saline solution iv's and also took a CTscan, which came up OK. Next I had to have additional saline solution iv's for another day. Then a blood transfusion due to bad kidney function. This was all before radiation.

But right now I can feel the muscles improving very slowly through walking every day. The only good part is that I lost 40 pounds nearly a year ago, and it doesn't seem to be coming back yet. -Craig.

slickwilly

Craig_Griffin said:

Thanks for reply
Slickwilly, Thank you for your thoughts. I also may want to get my porta-cath out early. But it probably won't happen, since I found having the big "C" allows mainly for necessities, not what might be convenient. I am amazed at the type of comments so far. I began soul searching about protecting the port after an incident nearly 2 weeks ago. I still have a black and blue welt on my chest three inches away from my port. It happened when playing tennis doubles with a person that I hardly know. We were both close to the ball, and both swung at it. Somehow the edge of his racket hit me directly in the chest at full force. The hit was perfectly centered on my port, except that it was 3 inches lower. The black and blue mark is 1 inch wide and about 5 inches long. It is still there today. I have walked every day since then for my exercise.

About the steroids affecting the muscles, that could be the case. My chemo was Cisplatin, 5-FU, and Taxotare. After each treatment I was given a Neupogen (I think) shot to restore the white blood cells. On one occasion I was given the Nuelasta shot, the strongest one. It sent my white blood cell count from 1.0 to 32 within about 5 days, which is about 5 times too high. That gave me a migraine headache where I couldn't talk, and I went to the emergency room. They gave me a few saline solution iv's and also took a CTscan, which came up OK. Next I had to have additional saline solution iv's for another day. Then a blood transfusion due to bad kidney function. This was all before radiation.

But right now I can feel the muscles improving very slowly through walking every day. The only good part is that I lost 40 pounds nearly a year ago, and it doesn't seem to be coming back yet. -Craig.

Holy Craig. You have been through the ringer. My daughters got me a beagle out of the dog pound. He makes sure I get my daily walks and pulls me through the woods chasing every track he can smell. I understand what it is like trying to get our lives back together. Working past the pain becomes a daily thing. Just remember to stretch if your going to run. I went back to work and pulled a knee legiment while running as things were still too tight. I am 6 years out from my lymphoma and snowshoe, boat, camp ect. Sometimes in pain but its still worth it to live some sort of life. I snowmobile raced for 15 years so sitting around is not much of an option for me. There is no doubt the big C will change our lives in a bunch of ways. My neck fell apart after 25 shots of radiation so I ended up on disability. Losing 40 lbs is awesome. It took me 3 years to get the 15 lbs I had gained back off. Well good luck and don't be hurting yourself. Slickwilly

Craig_Griffin

slickwilly said:

Holy Craig. You have been through the ringer. My daughters got me a beagle out of the dog pound. He makes sure I get my daily walks and pulls me through the woods chasing every track he can smell. I understand what it is like trying to get our lives back together. Working past the pain becomes a daily thing. Just remember to stretch if your going to run. I went back to work and pulled a knee legiment while running as things were still too tight. I am 6 years out from my lymphoma and snowshoe, boat, camp ect. Sometimes in pain but its still worth it to live some sort of life. I snowmobile raced for 15 years so sitting around is not much of an option for me. There is no doubt the big C will change our lives in a bunch of ways. My neck fell apart after 25 shots of radiation so I ended up on disability. Losing 40 lbs is awesome. It took me 3 years to get the 15 lbs I had gained back off. Well good luck and don't be hurting yourself. Slickwilly

Snowmobiling
slickwilly, You must be from a northern state to have been a snowmobile racer. I am oginally from Michigan. I also had some degradation to my neck and spine from chemo and radiation. I started back with a chiropractor 2 months ago, and she pointed out the difference in my x-rays compared to x-rays from 2 years ago. She was actually upset about it, but I am not considering my overall recovery.

Also I will mention to you a person that I conversed with in the chemo room that had lymphoma. She supposedly had cancer in 80% of her lymphatic system. The color of her chemo was orange. If attitude makes all the difference, I believe that her attitude was one of the best I had seen under those circumstances.

I have scaled back my exercise routine to mainly walking. I have concluded that part of our battle is to respect the life that was given back to us, and for me that includes not getting involved in risky activities. I now realize how calming my daily walks can be. I can also feel the beginning of muscle toning happening, and still feel like I am "cutting through" the tight and tingling sensations very gradually. -Craig.

Wenchie

Craig_Griffin said:

Snowmobiling
slickwilly, You must be from a northern state to have been a snowmobile racer. I am oginally from Michigan. I also had some degradation to my neck and spine from chemo and radiation. I started back with a chiropractor 2 months ago, and she pointed out the difference in my x-rays compared to x-rays from 2 years ago. She was actually upset about it, but I am not considering my overall recovery.

Also I will mention to you a person that I conversed with in the chemo room that had lymphoma. She supposedly had cancer in 80% of her lymphatic system. The color of her chemo was orange. If attitude makes all the difference, I believe that her attitude was one of the best I had seen under those circumstances.

I have scaled back my exercise routine to mainly walking. I have concluded that part of our battle is to respect the life that was given back to us, and for me that includes not getting involved in risky activities. I now realize how calming my daily walks can be. I can also feel the beginning of muscle toning happening, and still feel like I am "cutting through" the tight and tingling sensations very gradually. -Craig.

Port
Craig:
I hated that dang port. I had mine removed one month after I completed chemo but...I now have a reoccurance and I had to have it put back in 3 weeks ago. One year without the port was pure heaven. Having it put back in a second time was pure hell. I guess there's a lot of scar tissue in there so it's much more uncomfortable the second time around soooo, if I had to do it over again, I would leave it in for as long as I could stand it.
Wenchie

Craig_Griffin

Wenchie said:

Port
Craig:
I hated that dang port. I had mine removed one month after I completed chemo but...I now have a reoccurance and I had to have it put back in 3 weeks ago. One year without the port was pure heaven. Having it put back in a second time was pure hell. I guess there's a lot of scar tissue in there so it's much more uncomfortable the second time around soooo, if I had to do it over again, I would leave it in for as long as I could stand it.
Wenchie

Port is OK for now
Wenchie,
I suppose that I was asking too much in the way of life's luxuries on this. As soon as I was told I was "cancer free" I had hoped that a few things could resume to normal, such as getting some exercise playing tennis. But for right now I am content not to. It is definately a task to determine what to expect with our "new normal". I am certain that the doctors are trying their best to advise me on this. So far they tell me that it is best to leave it in for at least 1 year after treatment. But they are not to sure as to why anyone such as myself would think this is so important that I beable to determine how much movement is safe. Of course to play it safe- as minimal as possible couldn't hurt, and that is what I have resigned to do.