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June 29, 2012 at 1:26 am #20418
I was diagnosed last November with Metastatic malignant melanoma, unknown primary to the left groin. PET scan, MRI showed only the left groin affected. Because of insurance problems, it took until April to set a surgery date. On May 1st, I had a radical groin dissection removing one very large positive node (11 cm in diameter) and 21 more nodes that tested negative. Since the surgery, I have had one complication after another including both of my drains becoming completely clogged, the development of lymphedema, and a seroma that developed an infection/cellulitis leading to a week of IV antibiotics in the hospital.
Each time I’ve gone back to the surgical oncologist, he’s given me the “you’ll be fine – nothing else will develop …” I’ve gotten very little information about any of these complications until after the fact and mostly from the internet (I’ve been using the University of Michigan’s Melanoma Surgery Handbook that I found online.)
A recent CT scan has shown that I have a growing nodule on my back and it will need to be removed soon. The same surgeon has said it won’t be like the first surgery and I’ll only be sore for about a week.
My medical oncologist (whom I’ve only seen twice) has not been much more informative but he was honest when he told me about Interferon not being very effective for melanoma. He spoke to the surgical oncologist and they decided to schedule me for the year’s worth of Interferon treatments anyway without discussing it with me nor giving me any other alternative. In fact, it was reading here on your forum that I realized I had a choice in the treatments. I have had bouts of depression in the past and live alone. Neither doctor mentioned the possible psychological/emotional problems with Interferon.
The answer now seems clear as I write this but I’m asking, do I need a new doctor(s)?
Has anyone else gone through all of these complications and what else do I have to look forward to?
I am seeing a lymphedema therapist and he told me that if I have surgery, I will swell again and the cellulitis can flare back up. Is this so?
I’m in the Chicago area and have been going to the University of Illinois at Chicago Medical Center for the surgeries and infection treatment. I do not feel comfortable going back for another surgery no matter how minor. Where should I be looking for the right doctors and how should I go about doing this?
Sorry this is so long – it’s been a really trying month and a half. I’m 48 and have never been sick or hospitalized before this (colds and occasional flu.) I’m really valuing everything I’m reading on your website. Thank you for being here!
Any info would be great!
Thanks in advance,
JudeJune 29, 2012 at 1:33 am #55113
Sorry after all of that I should have mentioned that I have not yet started the Interferon treatments because of all of the complications and I really do not want to do it at all.
JudeJune 29, 2012 at 1:52 am #55114DadZGirlParticipant
Sounds like you have been through a really rough time. If you are not comfortable with your oncologist /surgeon situation you should find one that you are comfortable with. You need to be able to ask questions and get answers. About your complications my Dad had very similar situation with femoral resection due to tumor in lymph nodes in groin area. He had 11 lymph nodes removed, a JP drain has been in his leg since 5/2 it comes out on 7/2, he also had some swelling, 2 hospital stays and many antibiotics. At first I thought the surgeon screwed up but the surgeon did a great job and now I know that, it is a very tough thing to recover from. My Dad is 74. He is now healing well and getting stronger. He did four infusions of Yervoy prior to surgery, it has helped him, it might be something you could look into. Similar to your situation again, but kind of the flip of yours, Dad’s primary was on his back, that was a very simple out-patient, not painful no-complication surgery. It is not the same as having a bunch of lymph nodes removed if they are doing a wide excision, even if it’s deep. Much easier to get over and recover from. I wouldn’t recommend skipping that. As far as living alone goes, my Dad did too until his femoral resection. I don’t see how he could have cared for himself and just being alone that much with so much going on would not have been healthy. Is there anyone who can care for you? Someone on your team that can attend appointments help with research and provide support? Even if you are fiercely independent, like my Dad, it is important to have a team-mate in this if at all possible. I’ll be thinking about you.June 29, 2012 at 2:18 am #55115LinnyParticipant
Oh my goodness! You certainly have been through the ringer.
If I were you I’d get a second opinion. Here are two places in Chicago you might want to check out. Both have been designated as centers or excellence for cancer and melanoma by the National Cancer Institute.
Robert H. Lurie Comprehensive Cancer Center
303 E. Superior Street
Chicago, Illinois 60611
University of Chicago Comprehensive Cancer Center
5841 South Maryland Avenue, MC 2115
Chicago, Illinois 60637-1470
You’ve got nothing to lose by going to one or both of these places for an opinion. If Catherine, our moderator pipes in, she may be able to provide the name of a doctor for you.
Doing interferon is a personal choice. I was really shocked to hear that it didn’t offer all that much of a benefit over observation only.I preferred to not make myself sick for an entire year and observation only didn’t make me feel secure, so I opted for a clinical trial. You may also want to research if there are any clinical trials for Stage III melanoma going on.
I was diagnosed in December 2011 with an unknown primary and had all the lymph nodes removed from my left axilla. Only one node had tested positive. So we were both diagnosed with unknown primaries about a year apart.June 29, 2012 at 6:54 pm #55116Catherine PooleKeymaster
I’ve heard great things about Northwestern and they are the leading place in Chicago for research of melanoma. I would not do interferon with any history of depression. hope things go better for you!June 30, 2012 at 12:08 am #55117 DadZGirl, Linny, and Catherine,
Thank you for the info and encouragement!
I called Northwestern today and talked to a triage nurse about scheduling an appointment. Unfortunately, the cancer center does not take my insurance. I’ll try University of Chicago tomorrow.
Best wishes to you and your’s!
JudeJuly 12, 2012 at 12:32 am #55118DadZGirlParticipant
Just checking on you to see what you’ve found out and see how you are doing.
Let us all know when you get the chance.July 12, 2012 at 9:55 am #55119cohanjaParticipant
I don’t know about “center of excellence” designation but maybe another place to look into in the Chicago area is Dr. Howard Kaufman at Ruch University Cancer Center, I believe he specializes in melanoma. There is also Dr. Jon Richards at Advocate Lutheran General Hospital whos is a melanoma specialist.July 12, 2012 at 10:22 am #55120cohanjaParticipant There’s also Dr. Joseph Clark at LoyolaJuly 12, 2012 at 2:58 pm #55121Catherine PooleKeymaster A good way to check a center out is to go into their website and see what melanoma research is going on and how well published in the oncology journals the head doctor is. If they are using “old” drugs like interferon/interluekin, etc you might want to keep looking.July 16, 2012 at 3:49 pm #55122 Hi again everyone!
I’ve. been off-line. for awhile.
Thank. you to all of you and your suggestions .
I. have sent all of my medical information to Dr Thomas Gajewski at the University of Chicago. He is the melanoma specialist there.
I’m just waiting for a his acceptance to see me.
In the mean time, I’ve discovered a couple more nodules. popping up- oh boy.
I’ll let you know how this turns out.
JudeJuly 20, 2012 at 5:09 am #55123
Thought I’d check in and let folks know that I have a tentative appointment with a melanoma specialist at the University of Chicago.
In the mean time, I’ve also received some information from NCI about clinical trials in Chicago . I see that the doctor I h ave the appointment with. is the principal investigator for Denileukin Difitox in patients with Stage IIIC. and Stage IV.
Does anyone know anything about this study?
Also, I noticed that the trial of Ipi vs. Interferon
is being done in a lot of places but University of Chicago is not listed. Does that mean the only trial available to me is the Denileukin Difitox?
Wondering what’s ahead…
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