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I have cancerous lymph in the retroperitoneum (I think it means back side of stomach cavity) - nodes which do not respond to chemotherapy. I find conflicting recommendations in the literature on whether one should remove surgically all the lymph nodes in the stomach cavity, or not. Anybody knows anything about it?
Sorry i can't offer any exp or knowledge regarding these lymph nodes,maybe you could ask your Onc about them and why they aren't removed during debulking~~~Joanne
Hi, I have stage IV ovca, and when I had my cytoreduction (debulking), a majority of my retro(back)peritoneal lymph nodes were removed. Since these nodes are a part of a "chain" , the normal flow of lymph fluid is disrupted. My experience was lower pelvic and perineum edema. I continue to have slight swelling, occassionally, a year later. If you have a good onc/surgeon and he/she is wlling to get those nodes out (esp since chemo hasn't cleared them) i would probably go for the surgery. It Is no small surgery, In order to "get at" the nodes the bowel and small intestines need to be moved aside. It is a big decision, good luck and may God bless you. Maura
When Mom had her recurrence, it came back there and in the peri aortic area. The surgeon told us that he would not operate in the peri aortic area (some surgeons do) but he felt since he wouldn't be removing those that he wouldn't remove the others. If she hadn't had the others he would have done it. This surgeon is not a big risk taker, he is aggressive, but careful... Years ago they felt that chemo didn't even reach the peri aortic area, they have since found out that it does. The chemo took care of both of the areas within 6 rounds. Have you tried chemo that hasn't responded since you had these nodes and which ones did you try?
What chemo worked on your Mom? I had taxol+carboplatin, gemzar+carboplatin- first worked but now after recurrence do not work on my lymph nodes. Then these are retroperitoneal - different than peri aortic?
Mom had both peri aortic and retroperitoneal lymph nodes. Peri aortic are located near the aorta. First round she had cisplatin/taxol through IP. She had a one year remission (although the drs try to explain the remission being the time from when you were diagnosed until when it came back! I don't think so! I look at remission from the time of the last treatment (when you are in remission) until the time that it comes back). Anyhow, her second go she had carbo/gemzar. I did have her taking the Essiac Tea- so I don't know if it helped or not, but I think it could have. After she had her second cycle of the carbo/gemar she couldn't continue because of such low blood counts so she continued with the carbo alone for the final four cycles. She continued with the Essiac Tea after chemo (using it to possibly ward off a recurrence) after being off of chemo for 3 months her CA 125 numbers continue to get lower. So to me, it's working for her.
Kathy
Thanks much for the info. Please, what is Essiac Tea? never heard about it..
Best viki
Essiac Tea is basically a formula that was made by a nurse in Canada. Many people from all over the world traveled to Canada with incurable cancer and her formula supposedly cured or at least put people into a lengthy remission. She was even given a hospital because she didn't have enough room for all of the people. She has since died and the formula is still available, of course there are many knock offs but the authentic formula is only available in one place. I spoke with several oncologists including Moms dr at Sloan kettering, an oncologist at MD anderson and one at Dana Farber and they all agreed that they didn't think it would help, but it wouldn't interfere with treatments. They said if we really wanted Mom to take it, do it but don't expect any results from it. All I needed to know was that it wouldn't hurt her or interfere with treatments and they said that it wouldn't. Whether or not it will work for you- who knows? Different things work for different people, I think it made Moms treatment more effective. I'll include the link to the site that we bought from. We bought the liquid formula- it's supposed to be the best.
www.canadianhealthproducts.com
Kathy
Viki, From all of your posts, it looks like I am a little behind you. Since you are no longer chemo sensitive (at least to platinum therapies), has your doctor considered any of the targeted therapies, such as Avastin, Sutent, PARP inhibitors and others? Many of these are in clinical trials, both in the US, and around the world. Try looking at www.clinicaltrials.gov. This site contains listings for trials for diseases throughout the world. You can do an advanced search that narrows things down to wherever you live. I encourage you to use whatever info you find to start another conversation with your medical team.
My original disease was retro peritoneal in early 2006. It means it is behind the abdominal cavity. I had many enlarged nodes, and one large peri-aortic node. My gyn onc debulked whatever he could, but had to leave some, including larger than 1 cm because of locations too close to major blood vessels. I had carbo+taxol+avastin for 7 cycles, then a year of avastin alone. I went into remission, with a low CA-125 and clean CT scans. Two months ago two small enlarged retro peritoneal nodes showed up on my scan. This time they are very close to the major vein running through the trunk. I had two opinions on surgery from Dana Farber and Mass General gyn oncs. Both agreed that surgery would be very invasive, very risky, due to the nearness to the vein, and would still require chemo afterward. And, both docs said that on the average, 2nd surgeries don't improve life expectancy yet for us. For me, the decision to go directly to chemo was easy after getting both opinions.
Since my disease was very sensitive to the carbo, we are trying carbo only now. Hopefully 3 cycles will do the trick, otherwise, we will go for 6 cycles. My greatest fear is developing an allergy to the carbo. I must say that for me, chemo with the single agent and no surgery recovery has been so much easier.
Best to you,
Sheara W
I had cancerous periaortic lymph nodes which could not be removed due to their location near major arterial/venous vessels. My oncologist said chemo can get the cancer in the lymph nodes. My CA125 went down to 8 with 6 treatments of taxol/carboplatinum IV. I would think that it could get the cancer in those lymph nodes as well, but I am not an oncologist.
There's a study floating around that suggests that if only one recurrent lymph node is involved, removing it increases survival. I had one recurrent retroperitoneal lymph node and one small bit of cancerous tissue surgically removed, followed by 2nd round of chemo and avastin. I have been in remission for one year after. Retroperitoneal does not mean in your stomach.
Hi elisa
Please can you give details of that study re. removal of lymph tumours being effective? I would like to find out more
JanP
I could email you the pro- and contra- articles on lymph node removal, or just send the references if you have access to medical literature.
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