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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Anonymous
Replies 4
Last reply 12/14/2014 - 5:30pm
Replies by: casagrayson, Anonymous

Has anyone had any success using alternative therapies in treating their melanoma either in conjunction with mainstream treatments or as stand alone treatments?

Login or register to post replies.

deardad's picture
Replies 11
Last reply 12/14/2014 - 5:13am

Hi this sounds a bit far fetched and I am sceptical, but I'm just wondering whether there is any substance or medical research related to the theory of ingesting baking soda on a weekly basis to decrease the acidity levels that is required for cancer to spread?

Has anyone tried this?

Nahmi from Melbourne

Login or register to post replies.

5dives's picture
Replies 9
Last reply 12/13/2014 - 7:07pm

Hello all, 

Let's go ahead and agree that anxiety comes along with melanoma, okay? 

I'm a (barely) 3b who is on a staggered 3mo rotation with oncologist and derm. I'll basically be seeing somebody every six weeks for the forseeable future. 

Still, some things worry me. I don't like to "bother" my docs, but I find it difficult to navigate things that *might* be indicators of a greater problem / recurrence. For instance, a questionable spot or a new pain. 

Is 6 weeks too long to sit on a new problem? Thoughts? 

Thank you, 

Elaine

http://melanomadame.blogspot.com/

Login or register to post replies.

eturner82's picture
Replies 9
Last reply 12/13/2014 - 10:14am
Replies by: Ed Williams, kylez, BrianP, eturner82, arthurjedi007, BP, Anonymous

Hi guys I'm in need of any and all advice, My husband just finished Yervoy and had scans 4 weeks out.... Dr meet with us and stated no new bone growth and we would rescan in 3 months. Great news I know!! the problem is yesterday dr called and said he had pulled the scan to tell us before he had read the report that came with it. He said the CT report that I would be reading in my husbands mychart was going to be very concerning to me as it would read that a lung nodule had increased in size by 1mm but that he had looked and looked at it and saw no enlargement at all.I was ok with this news knowing things get bigger before smaller with ipi, dr said trust him and continue with 3 month plan. I then got on his mychart to look at the repost myself it states........ three 3mm nodules increased to 4mm and one 4mm to 5mm.... NEW 6mm pulmonary nodule NEW 5MM pulmonary ( all in  middle lobe)also a NEW 9MM nodule within the upper lobe. New thicking at the suture line at right middle lobe resection area concerning for recurrent disease. Also New destructive osseous lesion of the 5th right rib and 4th and 6th  left rib. Also many lymph nodes in the chest have enlarged. I'm very confused as to why the doctor failed to say anything about the new growths. I am VERY  upset at this point and have no clue what to do... 3 months seems a really long time to go between scan..... up to this point bone mets in spine and hips was our major problem. So if anyone has any advice please give it.

Emily

Login or register to post replies.

Kmiles's picture
Replies 28
Last reply 12/12/2014 - 9:24pm

Hey guys,

I'm trying to plan for 2015 and the upcoming interferon one month IV followed by the 11 months of injections.  I know that no two people are alike but I'm trying to figure out working, family trips and just life in general. 

Were you able to work during the month of daily IV?  What about during the injections phase?  We have a multi family Disney trip planned... I'm trying to figure out if that is possible or not?  Hubby needs a knee replacement that was planned for February.  I want him to go ahead and do it so we can take care of each other together.  He wants to postpone it.  

One more, one more question.  Would you suggest a port?  My gut is saying yes to the port.  What is your thoughts?  

Can someone loan me their crystal ball??? I love to plan everything in my life... I'm thinking this is not for me to plan!  

Login or register to post replies.

_Paul_'s picture
Replies 9
Last reply 12/12/2014 - 6:27pm

I started ipion 9/24 and was scheduled for my last infusion on 11/26. My onc suggested to skip the last one as my pituitary more than doubled in size and I am now on prednisone and testosterone as a result. My next PET/CT scans are not scheduled until end of January and I can feel change occurring in my abdomen (it feels like a new tumor is growing on my left side under my rib cage). I don't want to wait that long since according to the onc the conventional outlook after stage IV diagnosis is less than 1 year, and it has already been three months since I was restaged. The way I look at it is if the ipi failed, then I have used up 3 of those months. I know it takes time for ipi to work but if there are new tumors or a lot of growth I am hoping to get on Keytruda sooner rather than later.

My onc is going to coordinate with my clinical trial Dr. (I am on a trial that combines ipi and stereotactic radiation of one tumor) so see about doing just a CT earlier.

So let's say I end up on the Keytruda. From what I have been reading Keytruda is slow too, but maybe not as slow as ipi. When do you decide whether its working or not? How long does one wait? I know these are subjective questions, and individual reactions are all different, but there is so much experience here on this board.

In the meantime, my sister who is a GP suggested I investigate palliative care while I am still in good shape. So I met with the folks at SCCA in Seattle and while it was a difficult conversation, I am away feeling good about their ability to manage pain should treatment fail. The nurse practioner I spoke too promised me that they could prevent a horrible agonizing death. Of course I am hoping to avoid dying any time soon, but it is comforting not to have to fear a bad outcome!

Thanks! - Paul.

Login or register to post replies.

SusanRice's picture
Replies 15
Last reply 12/12/2014 - 4:37am

Hi Everyone:

My is Susan and my Dad is currently battling Stage IV Melanoma. He's been on and off Dacarbazine for 1 year now, he has lesions in his lungs and liver, and after frequent scans, for the most part his lesions have stayed the same, shrunk slightly, or grown slightly. they have been hesitant to say treatment is working, but his disease has been stable for the last year which is all we can hope for (after reading so many sad stories within this forum).

So far, other than the side effects of the chemotherapy, he's had little to no sickness. The two things that seem to bother him the most are:

1)  pains in his stomach that seem to be diet related - scans have shown he has gallstones and he is going in to have an ERCP next week. He also had an infection late last year that Drs seemed to think was related to a gallstone blockage, causing his liver counts to go out of control. 

2)  the 'night sweats'. This is a new thing for him, and it's gotten really quite bad. it happens most nights, but not every night. I would say 4 out of 5 nights a week. Typically, he wakes up at 3-4am, his t-shirt and sheets are drenched.  

I am curious to know if any other patients also have the night sweats, is this a common thing with Melanoma? Or could it be a sign of something else? I have spent a lot of time on the web (good  and bad) and am pretty sure night sweats are caused by either an infection, cancer, or side effects to a certain type of Rx.

Can anyone offer me and my Dad some further insight into the world of night sweats?

Forever thankful!
Susan

PMA - Positive Mental Attitude Without that, it's too easy to feel defeated by Cancer. Cancer doesn't rule us. We rule it.

Login or register to post replies.

Kmiles's picture
Replies 5
Last reply 12/11/2014 - 11:14pm
Replies by: brittanyx, Anonymous, Ed Williams, Kmiles, Marianne quinn

Today I got my results from SNLB.  Both my right and left side showed cancer.  I will have the complete lymph node dissection between Christmas and New Years.  Can anyone tell me what this will be like?  Also they are suggesting interferon.  I'm in the beginning research search so anything you guys can tell me is VERY much appreciated.  

Login or register to post replies.

Dear MPIP Community Members,

We are working to create an extensive album of melanoma photos to be used in our education and media efforts. It is our hope that this album will help people learn what melanoma looks like and what to look for on their own skin and the skin of their loved ones. If you have photos of a mole or lesion that was diagnosed as melanoma and would be willing to share them with us, please send them, along with any details you would like to share, to me at education@melanoma.org. We are also interested in photos of moles that looked suspicious, but upon biopsy, turned out not to be melanoma. Upon receiving an email from you, I will send you a photo release form for you to fill out, giving us permission to use them. 

Thank you, in advance, for considering this request. Please don't hesitate to ask if you have any questions.

Sincerely,

Shelby - MRF

Login or register to post replies.

jenny22's picture
Replies 4
Last reply 12/10/2014 - 10:36pm

Hi to all who may read this....

It is hard to stop my mind from wandering, and my fingers from clicking away on the internet. After making it through 6 years with my husbands stage IIIA lung cancer diagnosis, I thought i would have been better able to handle all these feelings and fears.  He is a SURVIVOR and doing great almost 6 years later.

But I remember the beginning and all the those awful thoughts you cant stop thinking.  So now I am stage IIIB melanoma, just 14 months after stage 1B.....everyone said i had better than a 90% chance of no recurrence....so i guess i am just one of the unlucky ones.

A few things I wonder about:

1.  Is it worse to be diagnosed at stage III, or progress from stage I to Stage IIIb......?

2. I am considered IIIB based on intransit mets, (2 very small .5mm subq bumps near orig site) but with negative nodal status.....considered N2c....i have even been able to find some data that says N2c has a 69% 5 year survival as compared to overall IIIB which shows 59% 5 year survival.  (though we know all these stats are old)

3. So hard not to have many treatment options in the adjuvant setting for recurrent, resected IIIb......watch and wait doesnt feel great.....working on vaccine trials.

4. I know some poeple do survive this, but how likely is it that IIIB always progresses to IV?

5   It recurred in 14 months after stage 1, so worried that makes it more likely to spread again, and faster....

I have seen MEL experts at SLoan and NYU (michael postow and anna pavlick)....waiting for further info on vaccine trails from NYU, sloan has none.  Monday seeing Philip Friedlander at Mt. Sinai who may have trials and similar consultation tomorrow at Rutgers with Janice Mehnert for other trial info.  Even keep wondering about Interferon, though less interested in that.

I am a voracious reseracher and find myself online after midnight when i cant sleep.....wodinering if i should be running to MD anderson, Dana Farber....etc

What to do, how to get thought this???????????????  as we know many who have survived this are no longer here and writing daily...as they are out just lviing their lives..... so we see more of "us" who are in the thick of it, everyday

As the subject said: "so many questions, so much fear"

Thanks in advance for any replies and insight!

Login or register to post replies.

MelanomaAnkara's picture
Replies 14
Last reply 12/10/2014 - 6:35pm

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

Login or register to post replies.

JustMeInCA's picture
Replies 24
Last reply 12/10/2014 - 6:30pm

Hi, all -- still struggling with my 83-year-old dad's pain management. He was taking 15 mg Oxycodone as needed for pain because he didn't want the 12-hour Oxycontin, but that wasn't helping and he lost about 6 lbs. between his first and second infusion, I think because he didn't have much appetite due to the pain.

He started on Gabapentin (Neurontin) for the nerve pain, titrated that up from 300 mg to 600 mg only at night the past couple weeks (eventually aiming for 900 mg) and then added 20 mg Oxycontin about four days ago. He's had no issues with the Gabapentin, but the Oxycontin has had the zombie side effect -- he's barely left his recliner between his 6-hour naps! I lowered it to 10 mg today to see if it helps the side effects to move up more slowly.

At any rate, he was on the phone today with one of his childhood friends who battled another form of cancer last year. She told him to use cannabis, as that was the only thing that really helped her pain without knocking her out. (It's amusing to me that these two 80-somethings are having this conversation!) At any rate, Dad reported back to me that it's time for him to try marijuana -- I don't think he was completely serious, but it got me thinking.

We're in California, so medical marijuana is legal here, but I would have no idea where to start to find 1) a prescribing doctor (since I doubt the doctors at UCSF or his primary care doctor would prescribe it), and 2) the type and dosage. I did a search and saw that several people are using cannabis oil, so I'm just wondering if anyone (especially anyone in California) could give me some guidance. I've read that it has been shown to help with tumors, but I'm particularly interested in the anagelsic effects since Dad's having such pain.

I'll ask his oncologist about it next week, but I expect this is something we'd have to do on our own. 

Thanks!

Elaine

Login or register to post replies.

shanemcdonald99's picture
Replies 7
Last reply 12/10/2014 - 6:18pm

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 !

Login or register to post replies.

Kdw2012's picture
Replies 13
Last reply 12/10/2014 - 3:54pm

My Doctor just called yesterday and I have 3 brain tumors. This explains the recent very bad headaches.

I am wondering what treatments are done for brain tumors?. I want to go to my appt on Thursday with info.

The doctor prescribed Dexamethasone for  swelling. He said we will have to do radiation also, but this was just over the phone yesterday and we will be discussing more at my appt.

thank you

Kim

 

Login or register to post replies.

spitfiregirl's picture
Replies 4
Last reply 12/10/2014 - 2:20pm
Replies by: Ed Williams, spitfiregirl, Anonymous

hi everyone, first time joining the board, but have been reading your posts and gaining knowledge and strength!

I'm a few weeks away from determining which clinical trial to participate in (or worse case - biochemo!). I will time out of these options around 1/8 or 1/9. I'm stage 3A resected (1 SLNB found, other 18 nodes clean - they thought it was .5mm but they went back and were able to find aggregate cells to bring it to the >1mm mark, which should allow me to participate in the BRIM study)

It turns out I may qualify for the BRIM 8 clinical trial - I was wondering if anyone has participated in this, and what sorts of side effects I could expect. This is a placebo/drug trial (2 of 4 will receive drug).

The vaccine Trial is placebo/drug trial, but 3 out of 4 will receive the drugs.

Lastly, my (new to me) oncologist also suggested BioChemo - which I know is very toxic and intense. Has anyone done this and what were your results.

 

Thank you so much for your help & support!

~h

 

 

Login or register to post replies.

Pages