MPIP: Melanoma Patients Information Page

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The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

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I was on Dr. Omid Hamid's twitter page this morning and came across a tweet in support of Mike!!! Now, Mike I must ask who is "Striper McGee? Dr. Hamid put the following link up and also included a phone # for you Mike with an offer to help you with costs involved!!! Phone # 310-231-2121 Good luck with your meeting tomorrow!!!! Ed https://twitter.com/StriperMcgee/status/1169661209861414913

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swalters1038's picture
Replies 1
Last reply 9/24/2019 - 10:09am
Replies by: bethy62

Just wondering who out there has finished Tafinlar and Mekinist and there associated post treatment experience. I was feeling pretty good towards the end of treatment with good energy levels and a week after I was finished the combo have felt exhausted with very little energy. Anybody out there share their experience?

Cheers
Steven

Steven

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MarkR's picture
Replies 14
Last reply 9/13/2019 - 2:17am

Hi all
Heard today that my hospital will be opening a TIL treatment soon so guessing this is my Oncs plan for me if the Nivo fails as I expect. I have found out some info on TIL and there are some encouraging results but does anyone know the procedure on patients? I read one item that suggested a 4 week stay in hospital which I’m not too keen on....
Any info gratefully received
Cheers
Mark

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jbronicki's picture
Replies 19
Last reply 9/12/2019 - 9:28pm

Hi all,

Unfortunately my husband's cousin who lives in Henderson, Nevada had a toe amputated about a year ago. We didn't know about this until recently when we visited and his wife gave us the whole story. She also shared the picture with me before he had it looked at, of what it looked like before he sought treatment. Needless to say, when I saw it, I became was immediately beyond concerned. One of the worst I've seen and we know that melanomas on the toe and extremity can sometimes correlate to poor outcomes. The whole toe was bloody, disfigured and unrecognizable. Kelly, the patient, is a hard worker and most likely didn't want to get it looked at or worry the family. I'm not sure why, but it was another 9 months before treatment was discussed. I believe he is being seen at Kaiser in Las Vegas, but we keep trying to get him to come to Houston and MD Anderson. When we were there in August, they were just going in for the PET Scan results. As suspected, they found it had spread to his left groin and his adrenal gland which isn't great (PET scan showed mass with SUV 12.9). We recommended that he needed systemic treatment immediately and they discuss that with doctor ASAP and explained they need to see a specialist, not general oncologist. The general oncologist did start him on immunotherapy, I'm not sure exactly what but I suspect IPI/NIVO. i'm not sure how many treatments he has had, his wife is overwhelmed as they have found more spots and Kelly just got laid off and they have 3 daughters in college. they work hard but have minimal insurance coverage . They texted us and said they stopped his immunotherapy due to thyroid issue but I'm assuming the IPI (maybe the NIVO) has crushed his thyroid . I don't have much more information and we are trying not to overwhelm them with medical questions. My question is: What is the protocol now? Will they try to get the thyroid under control with synthroid and start therapy again if bloodwork shows improvement. How long does this normally take (6 weeks?). I'm so concerned since his original presentation was not good, the wait for therapy, and the aggressive nature of his spread. I will find out about BRAF status, we were asking them to ask the doctor this when we saw him in August, but I'm not sure. I will start researching this but I know this topic has been discussed on the board and wanted to get some immediate advice. I will also search through posts. He is young, in his early 50s and doesn't reach out much, so I think we need to make sure we advocate for him if him and wife will let us. They are two of the nicest people we have had the privilige of know and they don't like to burden people. Just devastated this is happening to them.

Thinking of Mike today as well and hoping had a good appointment with Hamid. We mentioned him to John's cousin as well since that is a short flight.

Many hugs to all of you and thanks for any guidance. I'm on a plane now but going to start looking into this.

Jackie

Jackie <3

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Affected's picture
Replies 9
Last reply 9/12/2019 - 11:37am

Hi Everyone,

My husband is to begin radiotherapy (IMRT) soon to his neck and lower jaw, but I am very worried about the dosage. According to the radiotherapy oncologist, he wants to give him 2 Gy daily, 5 times a week, for 6 weeks. Based on this information, he would be getting 60 Gys in total to the same area . Does this sound right? I've been searching previous posts to try to gauge whether this is standard, but compared to the previous posts I have found which mention radiotherapy dosages, 60 Gys is way too high. I know I should do more research myself, but have been hit by another whammy as we have not been able to schedule the brain MRI which the medical oncologist ordered due to the insurance company saying it is not covered. The oncologist says it is, so we believe it is just the insurance company being difficult.

To recap on my husband's resected tumor via parotidectomy and CLND:
Nodular type, Clarke level of V, Breslow thickness of 17mm, ulceration present, no regression identified, lymphovascular invasion not identified, perineural invasion not identified, mitotic rate of 19 per 10 HPF, micro satellite lesions not identified, closest margin of 14mm (invasive), deep margin of 2.5mm (invasive), 2 involved lymph nodes out of 43 retrieved (one of which is involved due to direct extension), Level II-IV lymph nodes from separate right neck dissection are negative for metastatic melanoma, pathological stage: pT4b N1

Any sharing of radiotherapy experience would be so greatly appreciated.

Thank you once again for all your support, and take very good care of yourselves.

Affected

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MelanomaMike's picture
Replies 21
Last reply 9/12/2019 - 9:25am

Hi ya'all!! WhoHoo! I met the Prophet of Immunal Warfare, the Melanoma Big Dog of The West Coast and i AM IN GOOD HANDS! that Dr. Jang cat (@ Kaiser Riverside) lied to me saying there was No Clinical Trials for me! But anyways, did blood work to see if my Melanoma is a candidate for Immtac (Immunocore) a British made drug. I have a 50/50 chance im eligible, ill know in 2 weeks or less. Speaking of Clinical trial, i signed up for one, a Phase 1b/11 open label Multi Center study of the Saftey & Efficacy of IMCgp100 in combination with Durvalumab (MED14736) or Tremelimumab or the combo of Durvalumab and Tremelimumab compared to IMCgp100 alone in patients with advanced Melanoma (me!!).
His team is working on my insurance to turn it around to straight Medi-Cal that they take, it could take up to 90 days, but around 40 to 60 days more so, thank GOD for the added "Leeway" money for i come back next week for a visit, and most likely after that but hes working with my broke Melanoma butt! He wrote up a script for a CBC panel, Brain MRI and CT scan to give my Kaiser Onco, ill get those done ASAP! Dr. Hamid was VERY CARING! i got in my gown and he looked and felt over my diseased body with compassion with his assistant and felt on my now baseball size tumor, he rested his hand around my neck as he spoke to my wife & i, even Hillary picked up on his compassion. Im in good hands guys, and YOU made it happen, my wife to, you ALL made it happen and im grateful beyond texted words! Ill get back on here later, time to eat im STARVED ! Haha...love ya guys...always have waaaay before things got serious..

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Rebekahtmiller's picture
Replies 9
Last reply 9/13/2019 - 1:15pm

Hello-
I am due to have a biopsy on my foot 9/26 for a suspicious lesion on my foot. The doctor is telling me it's suspicious for melanoma. My question is this. The spot is about 6mm and they are taking 2.5x2.5 inch area from the bottom of my foot. Does that seem like overkill? I will not be able to put any weight on it for 3 weeks they are telling me. Is that the first step the doctors should be taking?
Thanks,
Rebekah

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marta010's picture
Replies 4
Last reply 9/12/2019 - 12:27pm

Larry had his 4th craniotomy almost two weeks ago on Thursday and was home by Friday night. His recovery was remarkable - was alert and responsive immediately after surgery and spent one night in ICU with little to no pain or other side effects. He's a pro and opted to go home rather than spend another night in the hospital. Based on appearance, surgeon thought the pathology would show a recurrence of melanoma but it was just necrotic tissue from prior gamma knife and surgery #3! We are overjoyed and feeling very blessed. We have a follow up for suture removal tomorrow with next Keytruda infusion scheduled for 9/19. Sending prayers out to all who are battling. Take care!

Ann

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ed williams's picture
Replies 4
Last reply 9/12/2019 - 2:50pm

Now that Mike has met the "Man" Dr. Hamid it might be time for other's to get a chance to listen to Dr. Hamid present the kind of options that are out there! Here is a presentation from June 2019 on "Novel treatment options" at Aim at Melanoma at The Angeles Clinic melanoma conference. Mike, he gets into IMCgp100 (bispecfic) drug that he talked about with you at the 19:18 min mark. https://www.youtube.com/watch?v=fbSHUEbhTho&feature=youtu.be

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We have been discussing over on a stage 4 Facebook group that we in the brain mets club would like to find somewhere to come together to discuss options, you know, since clinical trails exclude us.

I said I'll ask two of the experts!

So . . Bubbles and Mr. Williams . . do you know of somewhere we can join or, can you provide me with some good information and I'll start a group for those of us battling brain mets and excluded from trials?

Thank you SO MUCH for everything the two of you do for us.

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MelanomaMike's picture
Replies 7
Last reply 9/12/2019 - 6:19pm

Hello MRF Family! thank you all who has responded {and who couldn't respond, or didn't want to respond haha} "so far" haha, bigger crowd then ya think haha! imagine all of us under one roof? like at a convention spot or a Banquet hall somewhere nice, iv always thought about that and may have even mentioned it, I try to play our Calif. lottery as much as I remember, "If" I ever hit the Jack Pot that would be one of my Top 3 things to do, pay for everyones round trip plane {1st class of course} tickets, all expense paid to wherever we all agree to meet! Hawaii? id like to go to Vietnam, not just because my Dad was there {War time} but its also beautiful in the outskirts....my other thing id do if I won, buy up a good piece of property {with house} and open up an Animal Rescue plus start up what I would think to be the very first "Ambulance" organization "company" for injured animals, not sure about "licensing" to run or creep through Stop signs and Red lights like Human ambulances but, we will try & push for it haha...anyways guys, sorry for the mind fantasy, I just really wish we could all be under one roof for a time, id pick you all up & give back so much to you guys...Hope ya"all are well or atleast decent, im getting the ball rolling on my end....

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Anonymous's picture
Anonymous
Replies 11
Last reply 9/19/2019 - 12:47pm

Hey guys!

Newly diagnosed stage 2b, looks like I will be starting interferon alpha 2 and I was wondering if that treatment makes you immunocompromised like other chemos ? I work in the lab of a hospital and that’s not a great place to me if my immune system is at risk. I have option for going on leave but I don’t know if I want to. Any advice ?

Andy

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sharonlynn210's picture
Replies 6
Last reply 9/12/2019 - 9:41pm

I know melanoma travels to groin , axillary, and neck nodes. My son had a full lymph node dissection in the right groin area in Feb 14 2018. He did a year of Keytruda and has had clear scans. He found a small bump in a node in the back of his head. has anyone had their Melanoma travel there?

Sharon

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