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
dian in spokane's picture
Replies 1
Last reply 5/13/2011 - 7:47pm
Replies by: carol b

I've been out of town for a couple of weeks, but I am back!

I'll be hanging in the chat room tonight, at around 4 pm pacific, and again tomorrow at 8 am pacific time.

Please feel free to come on in if you are a new patient who has questions or would just like to talk to someone else who understands the whole melanoma experience.

You oldtimers drop in too!

 

dian in spokane

Login or register to post replies.

kim2712's picture
Replies 3
Last reply 5/16/2011 - 4:48pm

My son is very, very ill as you know from my post titled "my son's journey thus far". He continues to decline. His lungs are full of fluid and tumors, as well as many other area's of his body. He also has horrible lymphatic swelling from the diaphragm down to his feet. The doctor will not give him anymore chemo as it did nothing for him. He did agree to give him a dose of ipi a week ago yesterday. He has gained over 60 pounds of fluid weight in the last few weeks. He and his wife want to try Gersen therapy but can't find anyone here to administer it. I don't know that he has enough time for that to work anyways. Is there anything else out there that may help him?

Thank you,

Kim

Login or register to post replies.

Hello again, all.

Just looking for some support today, as I am feeling overwhelmed and scared. My husband Don is undergoing what we hope to be the last round of tests before a treatment plan is decided upon. He goes in to Dana Farber tomorrow for a fine needle biopsy of a suspected met in his liver needed to confirm the Stage IV diagnosis.

First, I am just find myself worrying about every last ache and pain he has now. The large difference in the progession of his disease between the April 6th and his April 29th PET scans really has me worried about how quickly the melanoma is spreading. (April 6th scan showed more lymph nodes near the incision site that still had cancer and an area of concern on the left side of his neck near the thyroid gland. April 29th scan showed increased growth of infected lymph nodes as well as 2 small nodules in right lung (too small to categorize as cancer at time of scan), scattered areas on both lobes of his liver, and bone lesions on the left humerus, left ilium, left femur, right and left posterior ischium, right acetabulum, sacrum, spinous process of L5, vertebral bodies L2, L3, L4, the left 7th rib, the manubrium and the body of the sternum. Taken from report.)

The doctors made it sound like none of these areas were very large in size, yet that seems to me like an awful lot of spread in 3 weeks. And here we are waiting *another* 3 weeks before we begin treatment. I don't know what to expect; I don't know how to tell when a cough is just a cough and when it's a symptom, when aching is just sleeping wrong and when it's a symptom. I'm just so scared that the necessary time these tests are taking are making Don so much worse that any treatment he gets won't work. Or perhaps I should say that if the 1st treatment he gets he is not a responder to, I don't know how much time he will have to successfully try another.

Perhaps I'm over-reacting (I know I probably am) but I am afraid of making wrong decisions that ultimately affect Don's prognosis.

 

Also, questions about the FNB he's supposed to be getting tomorrow... How does that work? What is the probability they will miss the tumor site and have to repeat the procedure? The very LAST thing we want is after waiting a week for the results is to have to repeat it and wait that much longer for treatment. What should we know/expect about the FNB?

Thanks for all your input and support!

Michelle

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

Login or register to post replies.

Rocco's picture
Replies 3
Last reply 5/10/2011 - 3:23am

In March 2008 I participated in a pilot/Phase I trial at DFCI called, "Adoptive Cell Transfer of  Mart1/MelanA for Malignant Melanoma" during which I experienced a mixed result - significant shrinkage of a pulmonary tumor and a slight growth in another.  I am a firm believer that this trial aided my success with ipi in the  MDX-010 Compassionate Use trial that I entered into in August 2008.

Results of the 9 person Adoptive Cell trial were published on April 27th.  Here is a short overview of the trial from the DFCI website with an interview with Dr. Marc Butler. 

http://www.dana-farber.org/Newsroom/News-Releases/New-technique-extends-cancer-fighting-cells’-potency-in-melanoma-patients.aspx 

JimmyB if you're reading this, the full trial results may be of interest to you...

Luke 1:37

Login or register to post replies.

Rendergirl's picture
Replies 28
Last reply 5/16/2011 - 2:26pm

Hi I'm Becca, stage III. I don't know if I'm 3a, b or c... can't seem to get an answer from my doc. Anyways, had Melanoma on my upper chest, had a wide excision done, Lymph node biopsy in right armpit was positive for cancer. Had all lymph nodes removed 1 1/2 weeks ago in that arm, they all came up negative, so only the initial node was cancerous.

My oncologist has been waiting for surgical to get done with their part before he suggested further treatment, and now they are done. I'm scheduled to see him the day after tomorrow and I'm wondering what he's going to suggest. I know he's not a big fan of Interferon. As he said, it makes you feel like you have a bad case of the flu for a whole year. That doesn't sound like fun. My mom says she's going to push for observation, but I want to be proactive and make sure it doesn't come back. I don't want to just "wait and see". So what do you think my oncologist will suggest? And if he does suggest only observation, what does that mean? What kind of scans and/or tests and how often?

Thanks for any feedback...

Login or register to post replies.

Eugenia's picture
Replies 4
Last reply 5/13/2011 - 11:40pm

OK, from the beginning.  My SIL had a shave biopsy of a lesion on her lower left leg.  Lesion had been slowly growing and developed some tiny black spots, but had not bled or seeped anything except for once when she caught it with her razor.  The pathology came back as:

"Comment:  It is not known if this is a biopsy of a larger lesion or an excisional biopsy.  Due to small size, fragmentation and orientation, the margins cannot be adequately evaluated.

Skin, Left Leg Lesion:  Received and labeled “lesion L leg,” is a .2 cm portion of dark brown-gray tissue that is submitted as received along with a smaller minute fragment.

Clinical info or preop diag:  None given

Microscopic Description:  The sections consist of levels of two tiny fragments of skin with a melanocytic lesion.  There is a lentigenous melanocytic proliferation;  focally the melanocytic cells are seen in the superficial portions of the epidermis.  Cytologic atypia is mild to moderate.  No mitoses are seen.  A few lymphocytes are seen in the underlying dermis.  Fragmentation and orientation preclude evaluation of the margins."

This report came back roughly 8 days after the biopsy.  Two days later, my SIL went to GP to get copy of the path report and ask for a referral to an oncologist with experience with melanoma.  By this time, she had developed an infection in the wound left from the shave biopsy.

Two days later, she is in the oncologist's office and he tells her that because of the path results and her age (47ish), they will plan to do a WLE and SNL biopsy.  He sends her upstairs to a surgeon who performs a complete excision of the lesion with "good" margins--that is how the doctor described it at the time of the bx.

Today, five days after the complete excision, she received this pathology report:

"Pathologic Diagnosis:

Skin lesion, left posterior cuff, excision:

1.  No diagnostic features of malignancy is identified (please see microscopic description).

2.  Ulceration, granulation tissue formation, intense chronic, acute inflammation, focal giant cell foreign body reactions, and reactive/reparative epidermal tissue changes.

3.  Surgical resection margins are evaluated, showing benign tissues.  LL/mv

Tissues:

1. LEFT LEG - MELANOMA LEFT POSTERIOR CALF

Clinical History:

Melanoma L posterior calf S/P shave bx.

Gross Description:

Received in formalin, labeled with the patient's corresponding requisition number, with accompanying requisition labeled "melanoma L posterior calf", is a pale tan, hairbearing, rubbery, wrinkled skin ellipse with overall dimensions of 2.5 x .7 x .5 cm.  On the skin's surface is a tan-brown to dark grey irregular area with overall dimensions of 7 x 7 mm.  Black ink is applied to the margin and the specimen is multiply cross-sectioned.  (1A - C - toto on edge for LX2) KLL/rkm

Microscopic Description:

Microscopic examination performed.  Sections show no diagnostic features of malignancy.  No in situ or invasive melanoma is identified.  Focal deep ulceration, granulation tissue formation, intense chronic and acute dermal inflammation are noted, at the presumptive previous biopsy site.  Giant cell foreign body reactions are present. Subjacent tissue showed reactive/reparative squamous epithelial changes.  Surgical resection margins are evaluated, showing benign tissues.  Further well-controlled immunohistochemical stain (1C) showed that the reactive epidermal tissue and skin adnexal epithelial tissues are positive for pancytokeratin, with S-100 protein and MART-1 negative for in situ or invasive melanoma.

The immunoperoxides stain was developed and its performance characteristics determined by the Pathology Department at Wesley Medical Center, Wichita, Kansas.  It has not been cleared or approved by the U.S. Food and Drug Administration."

When the doc gave her these results today, he insisted that she still needs to do the WLE and SNL bx.  Am I missing something?  Do you suppose they are worried that the shave biopsy might have sent melanome cells into the lymphatic system?  It seems to me that the SNL bx is a very aggressive decision.  Any advice and help with deciphering the report are greatly appreciated!!

Login or register to post replies.

Nan in Nebraska's picture
Replies 4
Last reply 10/10/2011 - 2:15am

Does anyone know if Medicare is approving and  paying for Yervoy? I'm anticipating re-induction. Have scans May 24th.

Thanks,

Nan

Login or register to post replies.

Manubuzzi's picture
Replies 17
Last reply 6/7/2011 - 3:26pm

 

Greetings Everyone,
 
I hope that this message finds everyone well, or at least, on an upswing.  I am sincerely wishing you all well.  With respect to my mother, things haven't been going well.  Last week was great.  Before last week, we had had a difficult time, because she couldn't speak very well, she was confused, she couldn't remember much, and worst of all, she was aware of it.  Then, from one day to the next, she was great, and you could see it in her face that she felt so much better, and she just cried because it was a miracle.  
She remembered everything, she spoke perfectly, she had good mobility, etc.  Sadly, it didn't last long.  Saturday 4/30, we had to admit her into the hospital because she began seizing.  She was stabilized pretty quickly, but she regressed back to her "pre-miracle" state.  Due to the anti-convulsion medicine, she is extremely tired these days.  The doctors performed the necessary tests.  There was no bleeding detected in the Tomography,  and the 3 cerebral tumors are still active.  The blood test showed a low count of red and white blood cells and platelets.  She is really really weak.  Starting the day after the seizures, she was really tired and fatigued with trouble speaking and a bit confused.  We thought that it was all because of the new medication she was taking and that she would get better.  But today, it has been exactly a week that she has been taking the new meds, and each day she's more tired than the day before, she doesn't get out of bed, she sleeps practically all day.  We are completely at a loss.  We don't know if this new symptom is a consequence of the brain tumors advancing, the seizures she had, the anti-seizure medicine, or the other tumor in her liver.  Please, I'd like to know if one of you have had similar situations or if you have any help or advice about her new state.  We are so worried and desperate.
 
Thank you,
 
Manu
Son of patient

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/9/2011 - 9:55am

Hi Everyone,

 

Does anyone know if Stage 3c  Melanoma is eligible for California state disability. Please tell me what is needed to qualify? I am a newbie.

 

Thanks,

Kay

Login or register to post replies.

mom3girlsFL's picture
Replies 1
Last reply 5/10/2011 - 5:32am
Replies by: Vermont_Donna

Hi Everyone,

Been lurking, not posting lately.  All is well!

Just wanted to shout out to all the moms a very Happy Blessed Mother's Day!  I know my 3 young, beautiful girls were the focus and the driving strength behind all the *!!#^!! of mel's adventure last year.  And, as I sit here 6mths NED with hand made cards proclaiming the "love you mommy" sentiment,  I feel so lucky and overwhelmed with joy! I am also reminded of my own mom, 70 years old, driving me back and forth to treatments, taking care of my girls so my husband would miss as little work as possible, so selfless...

Congrats all you moms who are here, whether struggling yourself or supporting your loved ones...YOU ROCK!!!  And thank you for being the best you can be!  Keep fighting the fight!

Love and Prayers Always,

Laurie 

Do not fear tomorrow, God is already there.

Login or register to post replies.

Becky's picture
Replies 1
Last reply 5/8/2011 - 7:32pm
Replies by: carol b

Happy Mother's Day!  I am thankful today to have breakfast with my son who is 21 months NED. And of course my other 2 sons, the oldest (26)  living life with an uncontrolled seizure disorder. I have great kids!

Keep fighting

Becky

Login or register to post replies.

churchwelldana's picture
Replies 9
Last reply 5/11/2011 - 1:15pm

I have Cigna through my job and I am currently getting Interferon shots 3 days a week at the West Clinic. I am being charged a $25 copay for each visit, that's $300 a month for a year, just for my Interferon shots! Is this typical or do any of you have advice for what I can do to reduce my costs?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 5/10/2011 - 5:11pm

Hello everyone,

My 4 y.o. boy developed strange bump on the palm of his hand: it is reddish but when I press on it it becomes almost flesh colored.
I am Stage 1 patient and I admit that anything strange or unusual on the skin of my kids drives me crazy.  Warts do not blanch, do they? Should I be worried????

Login or register to post replies.

Rendergirl's picture
Replies 5
Last reply 5/8/2011 - 4:53pm

I had surgery one week and 2 days ago to remove the lymph nodes in my right arm. Since then I've felt like I have a football under my arm. The back outside of my upper arm is numb, tingly, hurts, and feel normal in small increments all over my arm. My elbow feels like I've banged it on something. These sensations also extend to the back of that shoulder and around the torso on the side of my breast. I've seen my surgeon this week and she thinks everything looks good, but I'm wondering how long these effects will last. I know the recovery time is 6 weeks and I'm only a week in. Has anyone else had these weird symptoms? The surgeon said she did have to cut two of the nerves going down into my arm, and that it could take months for them to grow back, if they do.

Any feedback on how long before my arm/armpit feels normal again? (Still not sleeping on that side, either).

Login or register to post replies.

Terra's picture
Replies 11
Last reply 7/18/2011 - 3:00am

We are so scared, tired, and besdie ourselves.  Derek was removed from his trial on Thursday after 5 weeks - P13K Mek inhibitor - Nras positive, BRAF negative).  He has been feeling great, decreased his pain meds, lots of energy, etc.  His blood tests this week showed his CV levels were at a critical level (breakdown of muscle enzyme).  ABout 2700 and at 2400 you are off the trial.  His has gone up before to somewhat high levels but had been decreasing and levels were stable. 

CV levels have gone up in other patients as well so we know it is a side effect of the drug but they also can rise due to extreme physical activity and Derek, in an effort to keep busy and get things done, layed flooring with my dad every day for 4 days prior to this appt and was exhausted at the end. 

Our Drs are trying to plead our case to get us back on thinking that his levels shot up so high due to the physical labour - will find out Monday - is there anything we can do in the meantime.  We did believe in this treatment very much.

What can I do?  If he has a cat scan is it ethical to take him off if it is working?  Can we do anything?  We don't have the same options in canada and derek will not spend thousands of dollars travelling to the states and "take that away from his kids" - we can try ipi and IL-2 - but don't want to be taken off this trial...

I am due to have a baby in 3 weeks and cannot afford to be looking now for a new trial - we NEED to stay on this one.

Any suggestions please - Terra

Login or register to post replies.

Pages