MPIP: Melanoma Patients Information Page

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.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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SarahW's picture
Replies 4
Last reply 11/25/2014 - 8:48pm

My husband has an appointment with radiation oncologist re: 3 new brain mets, all < 1 cm. He has already had Stereotactic Radiation Surgery on 8 previous brain mets on two separate occasions. 

Wondering how many times this procedure can be performed. What has your experience been?

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Rudy is still doing well and taking it one day at a time.  He is still on combo two weeks on, one week off and continues to take a maintenance dosage of cannabis oil daily.  I try to check this site at least once a week. I used to be a daily visitor but I am now trying to spend as much time living in a world outside melanoma and enjoying this time that my husband remains NED. As you all know, once you/or your loved one is diagnosed with melanoma you become part of the community of fighters and their loved ones and at least for me, it's impossible to forget that so many are struggling for each new day. Please know that I pray everyday for all afflicted with this dreadful disease as well as for their families.

Blessings, love and best wishes to you all! 

Gina

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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janetd's picture
Replies 10
Last reply 11/25/2014 - 1:48pm

HI,

I am hoping that I will gain knowledge, and support from others in this forum.  My husband just passed his 5 year mark from Stage 3 lung cancer.....I am hoping I too can say that one day.....although today i received some lousy news.

I could really use some words of encourgement or thoughts from those of you in similar situations.

Here is my story:

Sept- 2013-  Ok, I'll come clean here....I had decided to treat myself to some cosmetic surgery......i had a face lift and during the pre-op appt i asked the Plastic surgeon to remove something on my neck......never thinking it was anything, since i go to the DERMATOLOGIST regularly, every 3 months due to my history. 

When I went back for my first POST-Op appt, i was told that what he'd removed was 1.5mm melanoma.....amelanotic.....though the normla protocol would ahve been to have sentinel node biopsy I was told i couldnt have one since all the lymphatic drainage patterns in my neck would have been too greatly altered....I saw 3 surgical oncologists and ALL told me based on the size it was a very low risk that would have gone into a node....so I ahd the WLE and have been following up with SLOAN in NYC with ultrasounds of my neck every size months......Just passed the first year mark and all WAS ok.

Lst week i felt 2 small pea size lums under the skin on my neck....in the ame spot as the original one and about and inch or 2 away. Today I received the phone call confirming they were both Melanoma.

I was devastated when told that made stage 4A.......from stage 1 to 4.....skipping all in between.

Tomorrow I am having a brain MRI, followed by CTs with contrast on NECK, CHest and Abdomen on Wed.

Then scheduled to see surgeon and oncologist next wed and thursday.

I am not reading the statistics as i know they are grim and very old, before the new drugs recently approved.

BUT it would very helpful if i could hear a few longer term STAGE 4 survivor stories.....of course i don't know yet if it has spread beyond these addtioanl skin mets, but of course hoping for good enws after scans.

Hoping to hear from someone!

thanks,

janet

 

 

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MelanomaAnkara's picture
Replies 13
Last reply 11/25/2014 - 1:07pm

Hi, I need positive stories on yervoy. My mom had her first injection two weeks ago and we haven't seen any side effects for now. (Without two days pain in her armpit on seventh and eightht day)

She has liver metastasis(three, 15mm the biggest) and there is a  two small masses in her armpit. (19 mm,10mm).

Did yervoy work for you? Please share how and when did it work? Thank you for your concern in advance. My good wishes and prayings are with you. 

MelAnkara

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JerryfromFauq's picture
Replies 5
Last reply 11/25/2014 - 6:49am

Melanoma Vaccine has been approved for Dogs, now it lookes like one is coming for horses as well.          
http://www.abcactionnews.com/news/health/morphogenesis-announces-usda-sa...
 

I'm me, not a statistic. Praying to not be one for years yet.

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Jubes's picture
Replies 4
Last reply 11/25/2014 - 5:51am

HI All,

Has anyone who is on Pembrolizumab or Nivolumab noticed any changes in their memory?

I have had 4 cycles of Pembrolizumab and am feeling really good. I have previously done Dabrafenib and Ipi and the tumours increased in size on both of those. I am stage 4  in my lungs with unknown primary. Recently I have noticed that it sometimes takes me a few minutes to remember what i have been doing in the last couple of days. The drug company does not list any such neurological side effects, so it is possibly unrelated or stress related, or that I am not at work with my usual schedule. Just wondering if anyone else has noticed anything similar?

Thanks

Jubes

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Kmiles's picture
Replies 7
Last reply 11/25/2014 - 3:23am

Diagnosed w melanoma at the end of October. T3 3.25 and Clark level 4.  

Ok so WEL/SNB were completed on Thursday.  Ended up both underarms were done.  My back feels fine but wow, underarms are tough!  Doctor says I can't wear a bra or deodorant until post op. 

How do you do this in the business world?  I went out and bought big button down shirts and sweaters.  Do people stay home or go to work?  I have long term sick/short term disability insurance but I don't know if this is appropriate or not.  

Ant practicle advice is truly appreciated!  

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shanemcdonald99's picture
Replies 5
Last reply 11/24/2014 - 5:11pm

Hi

I went through the Yervoy routine around the same time as Ginger in August and September.

I tolerated the yervoy well, but the follow up scans were on the negative side. Sort of bad news / good news type of thing.   Which one do you want first ?

Tumors in the right lung did not grow, but 2 new ones in left lung and a previous one got larger.

Tumors on liver shrank some , but the ones on Pancreas doubled in size. The pancreas acted up for a few days and that sent very sharp stabbing pain throughout my abdomen and back. I could not eat for a week either. I just could not digest anything. That calmed down and is better now. That was some brutal pain that Dilaudid would not even touch. It scared me too.

Bone lesions in spine did not grow and are stable. ( Radiation in January for that)

New tumors showed up in upper arm and somewhere in my foot ( in the bone )

So, my oncologist applied immediately for Keytruda as he feels it was not successful. So that is sort of good because the results in trials of both Yervoy and anti pd1 were very good.

He has 6 people on the Keytruda already and they are tolerating it very well so far as far as side effects.

Of course I will check back with any results from the Keytruda or side effect issues.

peace

Shane

Ginger , hope you are still doing well !

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Jewel's picture
Replies 5
Last reply 11/24/2014 - 4:18pm

Hi,

My husband just recently started Yervoy, he is getting 300mg, he is 220lbs. Is there data out there to show the difference in reponse between the two doses. It seems like your longer responders were on the 10 mg? Thanks for any and all info.

Jewel

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Anonymous's picture
Replies 6
Last reply 11/24/2014 - 3:58pm

Someone on this list was seeing a doctor at Emory a while back but a search here did not turn up that post. 

Second question:  Can you contact someone privately thru this list?  Not chat, private email.

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churchwelldana's picture
Replies 10
Last reply 11/24/2014 - 12:19pm

 

I was recently diagnosed with stage 3 melanoma. I've had a SNB and one of the lymph nodes was positve for cancer. Now they will 
remove all the remaining lymph nodes from my groin. The nurse said the typical recovery time would be 4 weeks. Is that accurate? I'm a fourth grade school teacher and I was wondering when I might feel like returning to work.

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My mother has seen her melanoma seed to the surface of her skin over the past five months. The tumors are localized to the original limb (leg), but are quite painful. The lymphoma she experiences does not help the pain she is in. She is a candidate for a procedure called a limb perfusion, which cuts off circulation to the limb and infuses it with chemotherapy drugs directly. This includes removing remaining lymph nodes. It is apparenlty a considerable operation to recover from but has the potential to cause the seeded tumors to recede for an average of 10 months. 

If anyone has experience with this procedure or caring for a loved one with seeded melanoma I would be very grateful to know. We are very concerned with how to reduce her pain. 

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Replies by: Squash

I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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I have read on closed boards lately about also many people being told they are over reacting by being worried about their skin cancer diagnosis.  After all melanoma is just a skin cancer and there have been so much advancement that we shouldn't really worry aabout  it.  Here is some comments I have to make about the optomisim in the latest article I have seen. 

MY OPINION - I have a couple of qualifications that I think apply to the optimism of this article. http://www.medscape.com/viewarticle/835282?src=stfb

I have a couple of qualifications that I think apply to the optimism of this article.  I do not mean to cause anyone to not have hope, it is just that articles like this present a false picture of where the overall melanoma treatment world is today..------ Please read thd complete article and my response before attacking my OPINION.

The title of the article ''We Have Cure in Our Sights'” is not exactly what the Oncologist asked.-----
“He asked : "Can we now cure an incurable disease in some of our patients with metastatic melanoma?" ----

I do not know if things were so much better in Australia than they were in the US in previous days,but.

-----------The article says that about 1/3rd of Dacarbazine (approved 1975) patients would be alive after a year of treatment with this drug.

-----------Responses seen with interleukin-2 (aldesleukin), approved in 1988. has a one-year survival rate of 46%. IL-2 was approved by the FDA for renal Cancer in 1992 and for Melanoma in 1998 and had a positive response benefit in 15-23% of Stage IV patients receiving it (a 5-8% complete response without ever having a recurrence). Most never got it because either they did not qualify for it and also most Oncolgists were not experienced with using it..

------------The statistics that were available when I went to Stage IV in Feb 2007 said that with treatment that there was about a 75% chance I would not see a year of survival.

------------Article says “The data on ipilimumab out to five years show that about 20% of patients become long-term survivors, “ Again to the uninformed this appears to say that 20% of melanoma patients are long term stage IV survivors. It does not point out that these statistics really only apply to 20% of the 25% of people that may respond to the Yervoy (Ipilimumab) in the first place. This actually is 5 out of a 100 stage IV patients.

------------The data ”nivolumab (Opdivo, Bristol-Myers Squibb), which has reported one-year survival rates of 73%, and for another combination of a BRAF inhibitor with a MEK inhibitor, vemurafenib with cobimetinib, with a one-year survival rate of 83%.
------------ The positive response (not long term nor cure rate) to Opdivo is around 50%. so while 73% of 50% is 36.5% for a one year survival, this is good, but still a long ways from a general melanoma cure. The same for the 83% of 50% for the one year survival of the BRAF/MEK combo.

Yes, we should have hope with the Improvement in these numbers from where I started, but “CURE??” for overall “melanoma"? ------------ MUCH more work to be done.
-------------------------------------------------------------------------------------------------Why shouldn't even our family and friends that read such articles think we are over-reacting to our diagnosis?-----------------

 

I'm me, not a statistic. Praying to not be one for years yet.

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Replies by: Maureen038, kylez, RJoeyB

Hi everyone, 

     It's been awhile since I've posted, but I do read MRF every day and my heart goes out to the people who have died or are struggling now. My prayers go out to everyone fighting this battle. It's so wonderful to know though that there are so many people who care and truly have wonderful knowledge on this board. Thanks Tim too for providing this format!

     First, thanks Janner for your wonderful advice on my son. His three colorless bumps were nothing. It was incredible news for us!!!!

      My husband had a PET/CT yesterday. He is on the phase one ipi/ nivo trial. He also had TIL therapy at NIH before this trial. We feel very strongly that the combination of the TIL therapy and the Ipi/nivo trail have worked together to help my husband have great results. If you look at Lion Biotechnologies they are running trials with TIL and nivolumbab and TIL with ipi. We truly feel Dr. Rosenberg's work has been groundbreaking in the melanoma world. My husband  has been stage 4 for over two years with nine lung nodules. The scan showed nothing new, but his one nodule grew again from 2.8 x 2.1 to 3.3 x 2.4. cm. The SUV max is 19.2, There are two lung nodules that are about 7 mm with no FDG uptake. There are a few very tiny nodules that have a SUV max of 3.5. It seems that some nodules have disappeared. This is all fantastic news except for the one nodule. Our concern is that Dr. Kirkwood at UPMC has discussed before that he can have the one nodule taken out, but BMS has to agree to it for him to continue on the trial. My husband was almost taken off the trial in June and I want to make sure there's no problem at our appointment  on Monday in Pittsburg. Does anyone have a scholarly article I can use in case we have to argue our case. Thanks from the bottom of my heart!!

Maureen

      

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