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October 1, 2013 at 2:24 am #21607
I am posting here because my fiancée was diagnosed with stage 3b melanoma (1 node). 2nd surgery yielded 20 negative nodes in the armpit. The sight of the tumor is her upper back. She was given 3 options for Tx and they seem to be the same 3 I keep reading about on this forum. Do nothing, interferon, or the clinical trial with a 50% chance of ipilimumab or interferon.
This really is a terrible thing to go through. We thought that after the two surgeries to remove the tumor and the additional lymphnodes would have been it considering they said all of the cancer in the tumor was removed. We were wrong.
My fiancée is 29 years old and in good health other than this. She is having a hard time in deciding what course of Tx to take. Any suggestions?
Any words of wisdom? We could sure use them
I really would like her to get into the Polynoma pol-103a vaccine trial but it appears closed.
Thanks all!October 1, 2013 at 11:56 am #62641LinnyParticipant
I’m in a similar situation to your fiancée, except they never found a mole. I’m sure she was also told that she did not have advanced melanoma and that’s a very good thing.
With regard to her options:
Doing nothing is a viable option. There are people on this forum who are doing just fine with it. With this option you see the doctor on a frequent basis and you also get PET and/or CT scans on a regular basis. The visits lessen in frequency as time goes on
- Interferon is harsh and based on statistics, not all that effective. If your melanoma is destined to return then it only delays that return by matter of months. In the meantime you’ve been sick for an entire year not from melanoma but from the interferon side effects. If you searched this forum you will find a wealth of information on the pros and cons of interferon. My understanding is that it’s becoming “old school”.
- Clinical trials are great. You get frequent doctor visits and scans just plus you feel like you’re doing “something” to keep the melanoma from returning. If she opts for the Ipilimumab/Interferon trial I would pray that she gets on the Ipilimumab arm. That drug is not without its side effects but statistics seem to indicate that people seem to do better on that than on the interferon, which really puzzles me about this trial. When you see articles like this
you can’t help but be optimistic about Ipilimumab. one
Since her lymph nodes were removed she also needs to get educated about a condition called lymphedema. Her surgeon and oncologist should be able to fill her in on it. There’s a lot of information about it on this forum and also on breast cancer forums. It’s definitely a slap in the face after a cancer diagnosis. But if it manifests, it is a manageable condition.October 1, 2013 at 8:29 pm #62642AnonymousGuest
Solid Gold advice Linny and thanks for the link.
If it were me, I’d absolutely go after the IPI trial, if anything for the peace of mind that you’re doing something and, as Linny said, you’re watched very carefully. You’ll also know pretty quick if you are on the IPI arm of the trial as it’s an IV infusion every three weeks. Intereferon is traditionally an injection everyday, 5 times per week or once every week, depending on what type is given.
One nice benefit from the IPI is that it can really pump up your immune system T cells which will then target any residual melanoma cells that may be circulating in your blood. This effect can last quite some time and I bet she’d be given maintenance doses every 6 months as well.
I hope this helps.
JeffOctober 1, 2013 at 11:12 pm #62643
Thank you for the advice. She has her initial PET/MRI next Wednesday in hopes to find that it did not spread anywhere else other than the tumor site and the one lymphnode. The one lymphnode that cam back positive was only 0.1mm of cancer, so the chances of it moving anywhere else were hopefully very slim.
She is leaning toward the IPI trial and as you call can imagine, we are desperately hoping for the IPI arm of the trial.October 1, 2013 at 11:25 pm #62644tbeauParticipant
Your fiancé is very lucky to have you for support. The fact that you are posting here for information about her diagnosis and course of treatment is wonderful. I wish you both the best of luck.October 2, 2013 at 1:23 am #62645ThandsterParticipant
I’m a little confused about the stage. Your first post says stage 3b but then you said one node with .1mm cancer. One lymph node with microscopic cancer would put her stage at 3a which is a better prognosis but I think it would also mean she is not eligible for the ipi vs interferon trial. I haven’t watched the trial site very closely recently, but the ipi vs interferon trial I looked at(8 months ago) when I was making my decision was only for stage 3b or 3c. I am also 3a so couldn’t participate. Just something to verify with your onc. Maybe there is a new one for 3a.
Keep us updated and good luck.October 2, 2013 at 12:12 pm #62646
I’ve looked high and low and can’t find the listing for this trial. I believed it to include 3A patients though. Stay tuned, unless you can find it. I checked clinicaltrials.gov and BMS trial connect.October 2, 2013 at 12:14 pm #62647katie1Participant Ulceration may be what lead to the staging? I wish you well with your decisions. Did they test for mutation status?
KatieOctober 2, 2013 at 3:02 pm #62648
Ok, yes, you can’t be in the IPI vs. Interferon trial unless you are 3b and up. Here is the listing for a lot of trials, not up to date I’m sure. http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=6204939&vers=2October 2, 2013 at 6:57 pm #62649AnonymousGuest This one appears recent with a bunch of sites. I bet IIIa is allowed as well as IIC.
IMO, randomization against HDI is not necessary as HDI has been studied up one side and down the other over the past 20 years. I see no purpose it. I saw no mention of being able to cross over to IPI if wanted but it’s best to talk directly to the investigator as they have the actual protocols.
JeffOctober 2, 2013 at 10:08 pm #62650ThandsterParticipant
Maybe they will Jeff, but the inclusion criteria specifically states 3b and 3c. I don’t think they can just decide to take whoever they want. I think they have to stay within the stated and approved criteria. I think anything outside of the inclusion criteria would require a new study with that specifically included.October 3, 2013 at 1:41 pm #62651AnonymousGuest You’re right, the investigators can’t adjust things on their own. However, we found that the actual protocols the investigators get from the sponsor may very well differ from that stated in the links. The investigators live to those protocols, which themselves may vary a bit as the trial progresses. That’s why it’s best to get ahold of the investigator or trial nurse to see the current eligibility, exclusions and allowances.
JeffOctober 3, 2013 at 7:31 pm #62652
No, IIIa is not allowed, and I can’t imagine someone doing high dose interferon for stage III disease but I guess it is still going on despite evidence showing no overall survival advantage.October 4, 2013 at 11:09 pm #62653AnnieoParticipant Hi Windenman,
I was diagnosed as 3b also. Having one node positive, an ulcerated nodular melanoma brought me to the 3B stage. I am watching and waiting (in Ireland) since last December. So far so good, with little anxiety at this point. (Obviously, initially it was a very hard time)
I have been worrying and questioning lately the fact that I am to get no regular scans. I have had none since the beginning. From reading all other posts I’m beginning to think that everyone gets regular scans! I will post a separate post soon looking for people’s thoughts and advice on this. Though, the thought of opening a new can of worms scares me.
In all the reading I have done I think I would go with a trial if it was available to me here. I hope all goes well for you both. It is a very scary time. As one or two other posters mentioned, there is great peace of mind in knowing that you are doing something at least, when making a decision on the best way forward. Sometimes that’s all we can do.
Best wishes to you both,
AnneOctober 7, 2013 at 1:58 am #62654
She is stage 3b T1b N1a. She is leaning toward trying the clinical trial and still trying to figure out what to do if put into the inf arm. Thank you all for the help and support.
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