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"Recurrence" in lymph node

lindamarie53
Posts: 16
Joined: Jul 2003

I'm a stage IV survivor, have been reading the message boards, and am grateful to everyone who has posted encouraging messages.

I wonder if anyone has experienced a recurrence in a Supraclavicular lymph node. After two years of everything going in the right direction--chemo to shrink mets in my liver and duodenum, surgery to remove ascending colon and duodenal lesion, more chemo, successful liver resection, six more months of chemo (systemic CPT-11 and FUDR thru hepatic artery pump)--my weight was back to normal, CEA was 0.7, bloodwork was perfect, then a PET scan a month after I finished chemo showed cancer (confirmed by needle biopsy) in my left supraclavicular lymph node. A full body CT scan did not show anything else, however. I've been back on chemo--more CPT-11 with Erbitux--once a week. I'm feeling sick and tired again, especially after having had a brief taste of feeling energetic and enjoying food--am again losing weight and, frankly, freaking out over this! I'm so sick of feeling sick and tired, and I want to believe that I will get through this. I had been so positive for so long, but I'm very discouraged now. It's not only the disease--I had been in the midst of rebuilding my life after my long-term marriage ended 6 months before I was diagnosed (husband wanted to "move on"), my kids were away at college, and I had to start a new career. Everything has been on hold, and I want to move on. A few months ago I felt ready to take on the world, but now I'm just trying to make it from day to day, though I do feel well enough to get out among friends on the weekends, which really keeps me going.

Does anyone have any experience with this kind of recurrence. This node grew to the size of a golf ball in just over a month! I'll have another scan at the end of August, but it's so difficult waiting. It would really help to hear from anyone who had a similar experience. Thanks.

Linda

sallyjoy
Posts: 102
Joined: Apr 2004

Linda,
Can't help with the recurrance issue, but please do not give up hope. My hubby was dx'd stage 4 in Feb. He had the prim. tumor removed in March and is now awaiting surgery to resection his liver to remove the one met he has. His father also has cc. He was considered cured but it came back over 2.5 yrs ago - 8yrs after orig. dx. He had mets to lung, liver and pancreas. The met in his lung and pancreas are gone/dead ( they were not removed) and they are now working on changing his chemo for the liver met... He has done remarkably well for having all those places involved. He hardly gets any side effects, besides diarhea. He keeps us amazed... you and people like him give us great hope that even when obstacles arrive, they can be overcome. You are our inspiration, so don't give up hope! We will keep you in our thoughts and prayers... Hang in there!
God bless and Keep you.
Sally jo

lindamarie53
Posts: 16
Joined: Jul 2003

Sally Jo,

Thanks. We can learn so much from each other. It was good to hear how well your dad responded to chemo, and I wish your husband the best with his surgery.

Linda

KrisS
Posts: 232
Joined: Apr 2003

Linda- I am so sorry to hear about your recurrance. That has got to be tough. I am certain that this has got to be a very big let down. I am glad to hear that you have friends to help keep your spirits up.

I had metastasis to my left supraclavicular node, after having surgery for peritoneal metastasis, and radiation therapy for treatment of recurrance in some abdominal lymph nodes near my aorta. It was really weird. My arm was sore one morning and by that afternoon I had swelling over my entire clavicle and a fever. A couple days later, the diffuse swelling went down and I could feel a pretty large lymph node protruding above my clavicle.

My radiation oncologist mentioned to me something about these lymph nodes getting affected occasionally with some other lower abdominal tumor. I think that there must be some connection of these nodes with the abdominal lymphatic vessels.

Regardless, hang in there. I hope that you respond well to treatment, and feel better soon.

Let us know how things go.

Best wishes,

Kris

lindamarie53
Posts: 16
Joined: Jul 2003

Kris,

There is a connection between these nodes and the abdominal area. I had a tumor in my duodenum when I was originally diagnosed (one of the tests I underwent was an upper endoscopy). After 7 months of chemo, it appeared to be gone, and nothing showed on the PET scan, but when I was undergoing surgery, they found another tumor in that area. I've heard that mets to the supraclavicular node is rare in CC, but I wonder if it's rare or just rarely detected because some mets don't show up in scans, and most scans for CC don't include the neck area. I didn't notice the lump on my neck until my doctor told me. It felt like a marble at first and became almost golf ball size within a few weeks (by the time we got biopsy results and I started back on CPT-11).

My doctors have not talked to me about the possibility of radiation yet. I'm feeling terrible on CPT-11. How did you tolerate radiation therapy? I've never had any.

Linda

KrisS
Posts: 232
Joined: Apr 2003

Since the supraclavicular nodes are palpable when they get big, and oncologists usually palpate regions where there are accessable lymph nodes, I suspect that they don't get ignored for long if they are getting big.

The one advantage of having it large was that I could palpate it too and could tell that oxaliplatin was working as I could feel it getting smaller.

I am sorry that you are feeling so badly on CPT-11. I can sympathize. I had 4 treatments with it when I was first diagnosed and had a pretty rough time with it also. But everyone is different. Some people seem to do just fine with it. I would let your oncologist know about how badly you feel. Perhaps there is some medication that would help aleviate some of the side effects.

They probably have not talked about radiation therapy because the lymph node itself does not seem to be causing you problems, and because, if you have a lymph node enlarged at some distance from the site of your previous tumors, they worry about other tumor tissue that they cannot see and want to treat your whole body.

Radiation therapy treats only a local area. It is used in some areas prior to surgery to make a tumor easier to remove by making the tumor smaller and killing off tumor cells that may be creeping into adjacent tissue at the edge of the tumor, or after surgery if they feel that tumor tissue microscopically extended so close to the surgical margins that they are worried some tumor cells could have been left behind. Most commonly this is done for rectal tumors where there is not as much normal surrounding intestine to be damaged by the radiation.

They also use radiation therapy to control tumor if it is in danger of damaging nearby important tissue such as the spinal cord before chemotherapy is likely to have an effect, or to control pain.

I had radiation therapy when I got very bad back pain due to lymph nodes stretching nerves from my spine. I tolerated it pretty well, although because of the location, they had to hit a bit of my stomach also, which made me nauseous.

I hope you feel better soon,

Kris

lindamarie53
Posts: 16
Joined: Jul 2003

Kris,

Thanks for telling me about your experience with this node.

Can you believe that I was on CPT-11 once a week for six months following my surgery and then put back on it a month ago? I had two treatments with Erbitux alone and then added CPT-11 for the next four weeks. When I saw my oncologist this week, I told him I couldn't stand it anymore--I felt as if the chemo was killing me. He didn't give me the CPT-11 this week--said it would be okay to just do the Erbitux for a week or two and then try another chemo. He also said that I could have it taken out--that we would learn more about what's inside--maybe dead cells.

I'm sure there's a large emotional component to my feeling so badly, because this node is so big--still like a golf ball, and I can feel an aching pressure from it in my neck. Knowing that it's from something in my abdominal area is freaking me out. There's a possibility that it was there from before my surgery, but I'm afraid the chance of that isn't that great. It's not shrinking, and may even be a little larger.

I'm so frustrated at how difficult this is to understand or interpret. I'm going to a major cancer center next week for a second opinion. I love and respect my doctor, but it seems like the reasonable thing to do.

I'm hanging in there.

Linda

Reini
Posts: 22
Joined: Jun 2005

Hi Linda,
I know it is a while since you posted your message. We hope you are doing well. My husband (34yrold)was diagnosed with Duodenal Cancer last november ( 4 weeks after our baby Mia Grace was born) Is this the primary cancer you had initially as well? We cannot seem to find anyone with this type of cancer it seems to be so rare. His cancer is stage 3 4 out of 16 lymph nodes were found to have cancer) he is currently having 6 months of cpt11 and 5fu amd leucovorin. Hope to hear from you soon
God Bless
Belinda, Reini and Mia Grace

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