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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Anonymous's picture
Replies 6
Last reply 5/4/2012 - 2:33am

So what is one to do?  We are in Hawaii 6 months out of the year, so being indoors all year round is not an option.  Protective clothing works for a bit, but can be sticky and warm.  So on those days I'm out in sun in my bathing suit, is sunscreen safe?  The sun seems like such a wonderful thing, I smile just seeing it shine and love the warmth on my skin.  It almost seems unnatural that something so wonderful can cause cancer.  Of course, too much of a good thing is never good; but is the alternative, oxybenzone, nano zinc, etc good?  Seems like lose/lose.  What is the BETTER of the 2 evils?  Confused as I try to live my new way of life.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2012 - 2:03am
Replies by: Bob B.

Spring Symposium 2012 

Translating Melanoma Research to Improved Patient Care 

Following the presentation, a panel of long-term survivors will share their experiences and stories of survivorship.

An opportunity for education, discussion & connection for patients,

survivors, families & friends 

Tuesday, May 8, 6:30 – 9:00 pm 

Dana Farber Cancer Institute

Jimmy Fund Auditorium

35 Binney Street, Boston, MA 

Luke 1:37

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aldakota22's picture
Replies 1
Last reply 5/3/2012 - 3:29pm
Replies by: washoegal

 Best freind saw doc. after severe back pain.Originally thought was a pulled muscle.Initial diagnosis is a tumor on his windpipe.Any advise to give him to at least give him a fighting chance against this form of lung cancer.A lifetime smoker since the Viet Nam War.Thanks for any input.    Al

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triciad's picture
Replies 4
Last reply 5/3/2012 - 6:33am

Hi Everyone,

Just a quick question...what makes an oncologist look for brain mets?  Is there anything that shows up in the blood?  I've been sent for a brain MRI, so I'm just wondering if he saw something that he didn't tell me.

Thanks for any help about this.

As always...continue the fight!

Tricia

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rjcravens's picture
Replies 4
Last reply 5/2/2012 - 10:02pm

Okay, i just finished my one year of interferon treatment on friday, even though i cussed, screamed, cried and laughed each day i had to do the injections and threatens to quit them. (My poor husband, as i am yelling this is my last dose, i cant do this anymore, he replies okay honey whatever you decide, knowing i wouuldnt quit. I go make on May 25th for my pet scan / mri/ restaging. The questions i have:

I feel helpless. I am driving my anxiety to a new level because i have lost the feeling of control that i had over preventing this beast from coming back. (Not that i ever really had controll) but i feel like i am just watch and wait mode and i am not surei can handle that

I am having these headaches on top of my head to back of my head for about three days, it that expected.

Last thing, about a month ago i went to endocronologist and he said i only have half of thyroid and diagnosed me with Hasimotos thyroid. Started me on 25 of synthroid. I feel like a walking waterbottle. I feel so bloated and constantly hungery no matter how much i eat. I also get winded quickly. Almost like signs and symptoms of congested heart failure. I am 35, is this what i am going to feel like the rest of my life?

Thank you for all your support.
Rachel

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Jim M.'s picture
Replies 6
Last reply 5/2/2012 - 1:44pm

Hi everyone,

 I had this twice in the last 6 months. It's a bacterial skin infection (deeper layers of the skin). The first time I had it I had a fairly high temperature and had little energy to get out of bed. I wound up in icu for several hours because my blood pressure was low (80s/40s). The infection was in my right (lymphedema) arm. It was red and hot to the touch. It was also moving up the arm. I was put on iv antibiotics. After several days in the hospital I was sent home with strong oral antibiotics. That did the trick.

 About a month ago I lost most of the range of motion in my left arm. I developed a low grade fever and saw a little red splotch on my left arm. Again it was diagnosed as cellulitis. It did spread to my armpit and a couple spots on my chest. This time I wasn't admitted to the hospital. I was given 1 dose of iv antibiotics in outpatient and prescribed oral antibiotics. My range of motion returned.

 I'm describing my experiences to see if others have dealt with cellulitis. For those who have had it, what advice do you have for preventing it (besides hand washing and trying to avoid scrapes, open wounds and bug bites)? I'm probably more susceptible to cellulitis since I'm taking Hydrocortisone which can weaken the immune system. My doctor would argue that it doesn't since I'm only taking the normal hormone replacement amount.

 Any advice would be appreciated.

 God Bless to all,

 Jim M.

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Bruce Davis's picture
Replies 6
Last reply 5/2/2012 - 11:15am

Feel very fortunate to have been on zelboraf for 7 months. The largest nodule in one of my lungs went from 3.8cm down to 4 mm in about 4 months time. Been through the arthritis like feelings that went from L wrist one day to R wrist the next day, or L fingers to R fingers and other a joints that we're affected. The worst pain is in the balls of the feet called metatarsalgia or plantar dysesthesias as I've come up with by researching on the web and talking to the zelboraf nurses. A lot of running in the past and high arches in the feet I'm sure add to the problem. Get some relief from anti-inflamatorys and ice. Just putting a shout out to see if anyone has experienced this foot pain or has been able to beat it. Like to stay on my feet and continue working as long as possible.

Presently it's "Don't give up."

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bikerwife's picture
Replies 10
Last reply 5/2/2012 - 7:05am

Lynn finished ippi march 26. Had first scans april 11 they showed mixed results some grew some shurnk and some new ones. Dr said did not want to wait wanted to start zelbraf. We got meds in mail and was ready to start. I began noticing changes thing were shrinkin and some disappeared. Some were size of thumb now are size of peas. Went to Dr. Today he says ippi is. Kicking in and we don't have to start zelobraf yet.

God has blessed us and we give him the praise.

What God leads u to he will. Lead you through

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Sherron's picture
Replies 1
Last reply 5/1/2012 - 5:11pm
Replies by: Snickers60

Hi Everyone,

It's been a while since I have been back.  I will be walking in the Melanoma Walk in Dallas, Texas on May 5th in memory of my husband Jim Clevenger, and for ALL OF YOU WARRIORS still fighting.  3.3 miles around Bachman Lake.  It's a beautiful walk for a wonderful cause...Wish me well.

Take Care,

Sherron,   wife to Jim FOREVER

Profile under Sherron

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/1/2012 - 1:25pm
Replies by: atcchris, Swanee, Janner, Anonymous, yoopergirl

I was wondering if anyone could please explain to me exactly what a subqutaneous tumor feels like? Is it small, like a pea? Hard? Can it move under your skin when you are messing with it? I'm not sure what is going on but I have something that is all of the above. Thank You.

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natasha's picture
Replies 1
Last reply 5/1/2012 - 12:52pm
Replies by: Linny

Hi! I noticed new freckle on my upper lip.

I have it for couple of months already.

I do not have freckles on my face ,so can it be new melanoma or I just scarring myself?

I even do not know how lip melanomas look like.

Does anyone had this expierence ?

Thank you

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Vermont_Donna's picture
Replies 9
Last reply 4/30/2012 - 11:08pm

Hi,

 I have been busy working and not on this board at all over the last few months. My recent oncology checkup (4/25) (PET/CT, labs, clinical exam and discussion) revealed no new melanoma anywhere so I am now 14 months NED! On a separate health note I did have a heart attack 4/2/2012 and was also diagnosed with "takot subo" cardiomyopathy. It is completely reversible. I will start 6 weeks of cardiac rehab on Monday. I was back to work the following week after my heart attack. My oncologist stated it has no connection to my history of melanoma. I am relieved to have no signs of melanoma as my oncologist said he would not be able to treat me so soon after a heart attack. I would need a few months to recover. I was sooooo happy to be NED for sure!

I wish all you fellow melanoma warriors success with your treatments like I have had with my treatment (yervoy). I am considered a complete responder with very few side effects. I have had numerous treatments before the yervoy without long lasting NED status.

On a somber note, I am saddened greatly to learn of our friend Boots passing away from this wretched disease.

From snowy Northern Vermont,

Vermont_Donna, stage 3a, NED, diagnosed in September 2006

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rlowe's picture
Replies 3
Last reply 4/30/2012 - 10:58pm

I have been stalking the board for 3 months now, getting much needed encouragement and info from my fellow warriors. I just received a troubling report from my last CT scans and would like some help deciphering the verbiage. a little background first: my first scan in July of 2011 showed a single 6mm nodule in my lung. Docs said probably nothing, just monitor it. October scan had no mention of it. My January scan report had no mention of nodule but found atelectasis. Now my April scan said no change in 1cm nodule, but the atelectasis had worsened and I have emphasematic changes. Here is the report:
"There is a 1 cm noncalcified soft tissue density nodule in the left lobe of the lung posteriorly with associated atelectasis. The soft tissue nodule is unchanged compared to the immediate exam on 1/17/2012, but is new since the prior PET/CT examination on 10/13/2011. The associated atelectasis has increased. I cannot exclude a metastatic deposit. No other pulmonary nodules are appreciated. There are no acute infiltrate seen. There appears be some mild emphysematous changes of the lung apices. There is no pneumothorax or pleural effusion. There is no appreciable axillary, mediastinal or hilar adenopathy. The heart is not enlarged. There is no pericardial effusion. The thoracic aorta maintains a normal caliber without aneurysm formation. The great vessel takeoffs are patent."
My research nurse said not worry about it.
With all the knowledge out here, can anyone give me an explanation. Thanks in advance for your help.
Stage 3b in Georgia. Please check out my history and profile.

RLowe

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big ed's picture
Replies 1
Last reply 4/30/2012 - 7:22pm
Replies by: Kelly7

Hello, I am / was participating in the recent NIH study on Yervoy for high risk stage IIIC. 

One of the laundry list of side effects said  "Rare (but serious)  lower bowel obstruction".    I received the 100 mg drip every 3 weeks for 4 treatmeants.

Well, that's exactly what happened to me - started with diahrea for a week and went to emergency room with belly pain  - was in hospital for 28 days - yup 28 days - like a bad dream.

Had the operation and of course complications where "something burst".  Anyway home now and on wound vac for don't know how long.  Seems like it's one thing after another - didn't know there wound be a month or longer of wound care.

Originally, had melanoma in chest in 1986 (25 yrs ago) and it came back in November 2011.  Had 30 lymph nodes removed with 6 showing activity.

Can only home that with cutting them out - gives me 25 more years....   And that my set back in the study can be used to "help" someone else beat this thing.

have fun

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Here's what I got back today....

 

Compound nevus w/ architectural disorder and focally severe cytological atypia.  The lesion extents to the lateral and deep margins.  This lesion has severe atypia and it does not appear that it has been completely removed, conservative excision to ensure complete histologic evaluation to exclude an adjacent melanoma is recommenced.  Histologic sections are of skin w/ a nevomelanocytic lesion.  The lesion has junctional and intradermal elements.  Junction cells are present singly as well as in nests.   There is a lentiginous proliferation of melancytes along the dermoepidermal junction.  These cells have focally severe cytolgoic atypia.  In the dermis are nevomelanocytes w/ maturation.  Also, in the dermis there is a mild inflammatory cell infiltrate composed predominantly of lymphocytes and there is fibroplasia. 

 

What does this mean?

 

Thanks!

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