24 answers

Chemo Port Pain

I had a port inserted about 5 weeks ago before beginning a series of chemotherapy treatments. It's working just fine, but for the last week I've had intense, off-the-chart pain around my collar bone and up the left side of my neck. An x-ray determined that there is no blood clot or blockage, but we can't figure out what's causing the pain. I even had a massage, which didn't help either. I'm taking narcotic pain meds throughout the day to combat this. Can anyone relate? Any ideas?

1 mom found this helpful

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What kind of chemo did you have? Vincristine, for example, can cause severe tissue damage if it leaks at all.

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Dear A.,

I was diagnosed with breast cancer last fall and with ovarian cancer three years ago, both of which I have miraculously overcome. Last winter after my breast cancer diagnosis I had a double mastectomy, (followed by reconstructive surgery) and was in a tramendous amount of pain from that. I am not sure what the source of your pain is, but after reading your story, I just had to respond. I admire your strength in fighting this disease, especially with being a mother and staying strong for your children. Please do not hesitate to let me know if there is anything I can do for you to help make things easier. I want to return what was given to me during my difficult moments. So many people reached out to me, and cooked meals for my family. It is a gift I don't know how I could ever repay. My phone number is ###-###-####. I would be more than happy to send meals over to you (I love to cook.) I know how it is when you are not feeling well to try and keep things "normal" for your children! Please let me help okay? As a breast cancer survivor myself, I feel like I have a special connection to other women who are going through the same thing, especially those who are moms.

Best wishes to you,

J.

1 mom found this helpful

Hi A.. You are in my thoughts and prayers. I am a registered nurse and I work with people who have been diagnosed with cancer. You should NOT be having pain from your port. It sounds like it may be neurologic to me, too. I would definitely advise you to call your oncologist and the surgeon who inserted the port. You need a CT or MRI to see what is going on. You should not need narcotics for port pain. If the pain is constant and only relieved with narcotics, that is a red flag. If the pain is intermittent and only after a chemo infusion, that is another sign. Please call your physician.
If there is anything I can do to help you, please let me know. I work as a Oncology Case Manager. I wish you the best of luck. The best advice I can give you is to accept the help and support of family, friends and strangers. You do not have to go through this alone. Take good care, Julie.

1 mom found this helpful

I am sorry for all of your pain. I do not have any answers or experience with this, but I wanted to write just to say I am thinking about you and I hope you find an answer that helps. This site has been more than helpful for me. These moms are the best!
If you ever just need to talk or need help with anything, please feel free to email me.

1 mom found this helpful

Wow! You have so much on your plate! Sorry - I don't know about what could cause the pain and I'm glad you are making sure the dr. is aware of this. I hope next year this is all behind you and... from one mom to another, you're in my prayers!

1 mom found this helpful

A., I'm so sorry that you are in pain right now and are even in this situation. Do you have a support group around you? I don't where you live, but I live in Barrington and can help out running errands or if you need meals right now. PLEASE let me know, my cell is ###-###-#### or just email back. My mom has been to Mayo 3 times in the past 3 months. I know how wonderfully helpful it's been to all of us to have the community support. Many prayers. Please call. -G.

1 mom found this helpful

A.:

I have followed up with some of my contacts. Their comments follow:

1. Consider following up to make sure the port manufacturer has not had any other incidents with other patients

2. I have known several people who had the end of the catheter move within the vein where it was inserted. The line actually"flipped" so the end was pointing up instead of down into the vein. Depending upon where the portacath was placed - juglar vein, subclavian or superior vena cava - this woman may have a fully functioning port, but the end of the catheter could have moved from the inferior part of the superior vena cava for instance and that could cause pain.

3. Catheters have also rarely caused arterial injuries when inserted, but it has happened. In very few cases, the lung is punctured during insertion, causing a pneumothorax. All of these problems are so rare and I would think this woman would have had symptoms during the first 4 weeks, rather than pain beginning in week 5.

I hope this helps.

1 mom found this helpful

Dear A.,
Our prayers are with you. I can not give any advice on the pain you are experiencing. I do have numerouse friends and loved ones who have survived many forms of cancer. One of the things that helped them thru this is concentrating on nutritional intake. One needs to help the healthy cells stay strong to continue the fight all those chemicals being forced to destroy the toxic cells. Because you are so young and have a very young family, mom needs to get better. Please look over the link below. Whole food nutrition, fruits and vegetables in the form of a capsule. There is no disease good nutrition can't help, and no disease that will get better without it. Listen to the doctors via the website. You will be glad you did. Best of luck to you and your family. Keep fighting!!
N. - Nutrition Naturally
www.jp4ahealthieryou.com

1 mom found this helpful

I'm sorry I don't have an answer for this, but I just felt I needed to say hang in there. You and your family will be in my prayers.

Dear A.,
I don't have any help or advice, but I just wanted to let you know you and your family are in my thoughts and prayers. Best of luck to you as you go through this. Stay strong and positive!
S.

Hi A.
I just wanted to send positive thoughts your way.
Thinking of you,
S.

Hi A.,

I've missed you, although my children have kept me plenty busy. I could tell it was my sister in Christ. I'm so thankful to God that you have this outreach and He is really helping you through your trial in this way of advice from strangers.
Summer has flown by and yet I still have so many things to do.
Prayers sent to for God to release you from this pain and heal your body.
(((hugs))) J.

Hi, A.,

My name is M., I'm 59 years old, a mom and a grandma. In 2003 I was diagnosed with cervical cancer; I was having some pain issues before I started my chemo and radiation but the pain increased tremendously AFTER I started treatment. I lived on Tylenol for about 6 weeks but most of the time it just dulled it, it didn't really go away. After treatment was complete the pain went away completely. I wonder if your pain is from your treatment? Just hang in there! You can email me at ____@____.com if you want to chat.

My 2 friends had the same issue. They ended up with terrible infections. They had the same symptoms and then a week later they had severe infections. Keep a close watch!!
Barb R.

It is possible that the port could be resting on a nerve although that would not be my first guess if someone was complaining of pain to a port. Regardless whether all of your xrays are negative be persistent with your doctor about finding the root of the problem. A port should not cause pain and as much as you hate the thought of having a new one put it, if it continues to cause pain I would insist on it. Are they still getting good blood return and flushes easily? Good Luck!

Hi A.,
Frst of all, you r in my prayers and I wish u the best of all outcomes. Hang in there and try to stay positve although it is hard at times. Regarding your port, it should not be giing you this much pain. You said u had an xray and it was ok. Sometimes ports can dislodge or simply twist and get kinked, but the xray should rule that out.m Have you ahd a port flow study where they inject dye? How long has it been since your last xray? I have seen cases where the first xray was negative then the second showed a blockage? Stay persistant, unfortunetly, u may have 2 have your port replaced. has your doc suggested a MRI? You shouldn't be taking narcs for port pain. Stay persistant with you doc or surgeon regarding this. Keep us posted. Hang in there :)

I had surgery in May which left me incapable to exercise for a few months. I ended up with severe pain in the inner left thigh and swelling. They did the test for blood clots but it came up negative and I was sent home and told I could use heat. 4 days later the pain was excrutiating in my left calf and behind the knee. Dr. sent me back to hospital again and sure enoug, the blood clots came out full blown. Weeks later, I'm finally in psysical therapy at home. Anyway, don't use heat and don't stimulate with massage...it may feel good but anything can happen. Good luck

Hi A., I know a terrific energy/holistic healer that can help you. I had a session with her over the phone this weekend and it is very powerful.
Her name is Sharon Cohen ____@____.com or by phone ###-###-####. You can also check out her website at http://www.endlesspossibilities2.com/endlesspossibilities...

All the best,
D.

Hi A.,

My husband had similiar pain when he had his port in. It was still working fine, but one part of it actually became disconnects or turned the wrong way, I can't remmeber which, it was last year. Anyway maybe suggest that to your Doc and see what he/she says.

Hi A.,
I had the same experience, and had to have my port moved to the other side. It had a kink in it. Please be persistent!
Once it was moved to the other side, I didn't have any pain AT ALL. (A feeling of something there) but not pain.

Feel free to contact me if you like. My prayers are with you!!
~J.

"Armed with the power of Thy Name, nothing can ever hurt me; and with Thy Love in my heart, all the world's afflictions can in no wise alarm me." -Baha'u'llah

as one suggested,maybe something has turned or twisted in there. It may be a thought........I would certainly ask if there is a possibility of going back and even having it changed to the other side in hopes of eleviating the intense pain.And if ONLY an X=ray,what about a cat scan or MRI to determine what might be causing the pain? I am surprised your oncolgist hasn't suggested it. Let's face it.......as one mom said you certainly have plenty on your plate and with children as young as yours you need to have answers in order to be able to deal with every day living. Good luck and keep persuing a reason for.....it has to be difficult "living" on narcotics for a pain of unknown origin. Keeping you in my daily thoughts and prayers.....J.

A. -
I don't have advice for you. I apologize for that. But I did not want to read your post and not reply. I just wanted to say that you and your family are in my thoughts during this journey. Wishing you the best!

B.

Hi A.,
I DID NOT have a port but I heard a nurse say to use white vingar with warm water to ease the pain. I use it during bath time while going thru chemo and the pain was gone from my legs. I am finish with chemo now. I pray that you will overcome the battle also.
http://fightingthebattle.ning.com/

What kind of chemo did you have? Vincristine, for example, can cause severe tissue damage if it leaks at all.

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