Pain from IP port?

• By suemac
• Posted June 8, 2009 at 12:38 pm
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Hi Anna,

You are a super survivor and I love your picture and spikey hair. My discomfort has been below the left rib cage. My doc is recommending PET because the CAT was inconclusive with white streaks. HAP hmo denied saying PET is experimental in ovca.

What is your insurance? How long to get approval? Did it help in diagnosis and treatment decisions.

Thanks and best of luck,
Sue

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• By danzer56
• Posted June 8, 2009 at 2:09 pm
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I noticed your post and will tell you about my experience with IP port now 2 1/2 years ago, I started having this horrific pain in my upper abdomen well away from my port. After going to the emergency room twice I had them do an xray and they found that the IP tubing had turned and was actually penetrating my heart area. I that them remove right away. We had already stopped using it due to getting so sick a month earlier so I didn't need it anyways. Please have someone check this out for you. Doctors said they never saw this before and it was very dangerous. Good luck sweetie. Kathy

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• By tg4love
• Posted June 8, 2009 at 3:50 pm
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I had an IP also and complained of pain. My OC kept telling me it was from the tubing. I put up with it for several months. Finally had it out and the pain went away. OC was right. However, the procedure was not a success. I understand they do not use this method anymore because they found it doesn't make a difference IV or IP. My cancer was back in 13 months. I believe you when they said it was bad news. Hope thing get better soon for you.

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• By PureGold
• Posted June 8, 2009 at 5:51 pm
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WOW! I thank you TG4LOVE and SUEMAC for your replies..and sorry that you both had such a terrifying experience w/the IP tubing!

I often wondered if that is what was happening to me too?
.....It hurts constantly & feels like a "stinging" sensation or as if I had been running and running & I have a constant "stitch" on my side!!
I feel alot of pressure on my left side as soon as I lay down in bed.....I have to lay more to my right side all propped on pillows to keep the pressure away.

I had a PET scan done on May 18th, but the written report does not mention anything about my IP tubing being anywhere near my heart...
My GYN/ONC at UCSF may have me re-do the PET scan at their facilities so their radiologist can give a more detailed report.....the local center I went to have the PET done on 5/18/09 was not done by a very good radiologist, as my doctor from UCSF said that the written report was very vague & not detailed at all..........so, hopefully in about 2 weeks or less I will have it re-done or have laparoscopic surgery to remove it & be done with it!!
I do know that for sure I will be re-starting chemo soon as I recover from that surgery...


SUEMAC, I have Healthnet/HMO thru my work, and last year they finally approved PET scans for ovarian cancer.
And YES the PET scans helped with my treatment, I think I'd rather find little bits of cancer than a BIG tumor! so I'd rather treat it right away...
My disease is monitored very well with the CA-125...I know it does not work for all women, but in My Case, it does & I am so glad it does....I want to be around as long as I can!

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• By PureGold
• Posted September 18, 2009 at 4:23 am
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danzer56/Kathy,
I requested a copy on CD of my May 18th PET scan and when I seen how my IP port tubing was turned, it just shocked & stunned me!
It reminded me of what you said, how your tubing was turning toward you heart area, and that is how mine was too!!!
I did have it taken out on June 29, 2009.....unfortunatley 5 days later on 4th of July, I had to be hospitalized due to a small bowel obstruction...
I had an NG tube for 3 days, and went home on the 4th day...I am so thankful it was not so bad as some of the stories I have seen for others on here.

Currently, I started chemo Wed. Sept 16 for my liver mets....Cisplatin/Gemzar...

My brain tumor will be monitored closely with another MRI in October to see if shrinks or totally disappears....This tumor was found on July 20 when I had a seizure 5 days after getting my 1st chemo and a CT scan & MRI were done to see the cause of the seizure...a 1.3cm lesion was found, they think it may be a mets from my breast cancer! But the last breast cancer I had was in 1998!.....I really hope its does go away because I miss driving! I'm going crazy not being able to drive myself anywhere or just to get out of the house.
for now its for the best...for my safety and others safety...
I'm glad your doing much better too since your IP port was taken out...Take care, & God Bless
Ana

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• By kimsmom
• Posted September 18, 2009 at 7:47 am
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wow!
i hope my daughter kim does not see all this right now, as she just had her IP port surgically placed yesterday, Sept 17th.
Her CT and PET were clear after just 3 round of IV carboplatin/taxol. On the 28th, she starts more chemo, half IV, half IP. She is concerned about bowel obstructions from the IP and possible infections.
does anyone know of any success stories with the IP?
thanks

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• By loveoneanother
• Posted September 18, 2009 at 10:40 am
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kims mom, hi I have a power port in my chest on the left side and its been here since march of 08 I did have some pain at first for about a month but not since then. I dont know if its the same as an IP but iam told its new and I like having all my blood work and chemo done just in the one port.good luck .paula

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• By Janto
• Posted September 18, 2009 at 10:53 am
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I have an IP port, which I have had since March 31. I have had no problems with it. I have just had my last treatment so I am hoping they will remove it soon.

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• By PureGold
• Posted September 19, 2009 at 11:02 am
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I have seen other posts on here that women had the IP ports taken out soon after they were finished with treatments...if I had known I would have so many problems with mine at the end, then I would have taken it out & INSISTED they remove it to prevent the pain I went through.....
So I would think INSIST on having it taken out right after IP chemo is done! spare yourself the pain...

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• By ChiMom
• Posted September 19, 2009 at 7:33 pm
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My IP port is not giving me any discomfort but my doctor did mention setting me up for a time to remove it. That was before my PET scan showed I still had cancer cells and I was started on Doxil which is given through my chest Power port. So I will have to mention it to him on the 23rd of Sept. when I have an appointment with him. I would just as soon get it out now as to wait until I have problems. Sending many prayers for you PureGold. You are a strong woman.

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