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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David McCaw's picture
Replies 7
Last reply 1/27/2017 - 6:12pm
Replies by: David McCaw, Anonymous, Bubbles

I moved from stage 3c with unresectable melanoma in transits to stage 4 with  mets in lungs and liver. I will be receiving combo #4 today nivo / ipi  Unfortunately my immune is not responding according to med onc after 8 weeks and 3 combos with CT scan.  The plans 1) Army 1 - continue with immunatherapy for today, 3 nivo wks, 5 wks nivo, CT scan at 6 weeks , if progression 2)  Different Army with Targeted therapy - Cotellic & Zelboraf 3) Investigating Adoptive T-cell Therapy at Princess Margaret hospital.  Any other suggestions. 

also note,my braf mutation is k601n.  I live in Ottawa, Canadaand will be seeing  Ed Williams today.

Thanks,

David

 

David, ( Stage 4, mets lung and liver)

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Bmine102793's picture
Replies 6
Last reply 1/27/2017 - 5:25pm
Replies by: mjanssentx, Bmine102793, Patina, UBContributor, Anonymous

My fiance had a dark mole on his arm that grew in size and width and changed colors one day he showered and scrubed it off and it bled pretty nast but was gone with in about 3 months he developed a large hard tumor like growth about 2 months after that he developed a large lump under his arm pit which i imagined was his lympyh node and i made him go to the doctor. She thought it was nothing to be concerned about and sent him to surgeon for removal. He had the lump by elbow area removed abd lump under arm removed. The beggining of this week he went in to have staples removed and sugeon told him that biopsy came back positive for malignant melanoma. We are scheduled to see an oncologist on tuesday for more info and treatment options we have no clue what stage we are in or how bad it is. Im am very scarred for him and our kids our financials and everything and i am unable to work because our youngest daughter has an immune deficiency that causes her to be sick constantly. Any advice or help? The area under his armpit seems to still have some kind of growth which makes ne think surgeon didnt remove it all

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Bmine102793's picture
Replies 3
Last reply 1/27/2017 - 4:26pm

As youve read my fiance was just diagnosed but we dont find anymore out till next week. Well hes having a hard time copeing. He took three days off to calm down and was supposed to go back to work today but woke up this morning was headed for the door ran back in and started throwing up and then called off. I know hes nervouse and i am to. And i really am not helpful because i have a bad outlook on things like this because thats just the way life has worked out so far. And its worse because i research so much and tell him what i find. I hate that i do that but my daughter was recently diagnosed specific antibody deficiency and with out my research and deep digging none of her doctors would have peiced it together yet. Sorry guys just venting and wprried and i love spending every moment we can tpgether but i have to get him back to his feet so he doesnt give up all ready

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Hikeratheart's picture
Replies 3
Last reply 1/27/2017 - 1:10pm

Hi everyone,

This forum has given me so much information and comfort since my melanoma diagnosis in May, 2015.

Brief history:
Surgery on July 1, 2015 to remove malignant melanoma from my right arm. 4.5 mm, no lymph involvement, non-invasive
.4 mm melanoma removed from my back. Two primaries.
Stage IIb
Since my diagnosis, I've had skin checks and scans every 6 months, showing NED. The August, 2016 scan showed a tiny pulmonary embolism in my left lung. I have been treated with Delphine( blood thinner) since then.  My next scan is Feb, 2017.  Praying it is gone, and I can stop the blood thinner.

About two weeks ago I felt a small lump/bump on my left groin area, and another  lump a bit larger, on my outer left thigh. My dermatologist examined and given my history, suggested that both be biopsied. She has referred me to a plastic surgeon for consult on the biopsy, which is set for Tuesday, Jan 31st.

I am hoping it's all nothing, but preparing just in case. Since I love and trust this board, input about my situation is appreciated.

Thank you !   Kathy

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Aloha14's picture
Replies 3
Last reply 1/27/2017 - 1:00pm

During December I had IV's put in 4 different times in my left hand/arm. Plus, some techinicians that didn't know how to do an IV and poked my vein in several different places on my arm. Now I notice there's 2 places where close to the surface veins feel hard. It doesn't hurt but I'm wondering if this is something my doctor should look at.?

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Hriggenbach's picture
Replies 3
Last reply 1/26/2017 - 7:12pm
Replies by: debwray, Aloha14, momof4boys

On the 19th I had minimally invasive lymphadectomy groin my Dr  accidentally cut my femoral artery and a  vascular surgeon had to be called in to remove a 3in section and reconnect.

since then my thigh is 100% numb and from my knee to my ankle has horrible nerve damage.

My insurance ran out so I have been put in a nursing home. My original tumor location is red and infected, my drain tube they took all the dressing off so it's just being held on by stitchs. Today is the 26th how do I get out of here?

Holly

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/26/2017 - 6:37pm
Replies by: snow white, Mandy88

Two weeks ago I felt lump near private area when looked that was nothing to worry about but I did then see around four raggy black patches of skin around the bottom of my labia inside, concerned I went to the doctors she was unable to tell me but said it wasn't an infection etc, she would have to refer me to a dermatologist, because I was getting anxious myself and my partner booked in to see a private dermatologist the next day, after examining she said we need an urgent referral to the ongologist just so we can rule out anything and they can do biopsies (more than one) and have a full internal examination, I was told that my doctor would send my referral (no private health insurance etc so back to NHS) however the doctor sent referral letter to wrong hospital so we have to ring around in order for the referral to get sent to correct hospital. An appointment has come through for the 31st to go to see oncologist at the treatment centre, I noticed on the letter it did not say anything about what was going to happen so I call reception they have said that this appointment next week it to see the consulate there  and to register as I have been there before so couldn't do the biopsys at first visit yet this was exactly what appointment was for urgent referral for examination etc, I would then probably have to wait more weeks to go back again for biospys and more weeks for results is this what usually happens as I'm so worried the hardest part is not knowing, I may add for over a year now I have been complaining of all kinds of aches and pains and fatigue doctors could never tell me anything other than perhaps your stressed or run down, so now finding this I'm really worried as I have no idea how long these black patches have been there, I have also now noticed a small white:clear lump on top of vagina and from what I can see inside uthera tube is also black I'm so scared now but cannot get anything sorry for being tragic just trying to explain and see if anyone else has had this or been in same situation thank you going out of my mind with waiting and not knowing and I think how rough  for a year I've felt and now I find this.. 

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mattg's picture
Replies 7
Last reply 1/26/2017 - 2:17pm
Replies by: mattg, oocn, Anonymous, jennunicorn

Some history:

I joined the melanoma club on October 25th, 2016 following the biopsy of a birthmark mole near my left sideburn.  Following a haircut, I knew something wasn't right.  The depth was reported to be at least 1.5mm putting me at 1B.  Went for surgery #1 on Nov 30th for the wide local excision and SLNB.  One lymph node came back positive (micrometastisis I believe is the term) putting me at 3A.  After discussions with an onologist and my surgeon a Modified Radical Neck Dissection was performed on Jan 6th.  We have coverage through Kaiser Permanente so all doctors, etc work for Kaiser.

During the neck dissection, the sternocleidomastoid muscle was removed and a major nerve (forget the name) cut and repaired.  I had a previous neck surgery as an infant which produced scare tissue complicating the dissection.  I have the planned incision from behind the ear almost to my adams apple, but then also have an incision forming a T shape towards my shoulder.  Thankfully, all 48 lymph nodes removed were clean.  Pain immedately following surgery was very minimal as I couldn't feel much at all due to the nerve damage.

Several days following surgery, the pain intensified especially near the base of where the sternocleidomastoid muscle was removed (near the collarbone).  I am now approximately 19 days post surgery and the pain is still intense, with little improvement.  Surgeon has refilled my oxycodone and told me that pain from thie surgery may last 1 to 2 months.  Some days I've needed to pair the oxycodone with tylenol to boost the effectiveness.  Initially I was told I would be pretty beat up for about a month, but honestly, I wasn't expecting that since I bounced back so fast from the first surgery.

Long post, but I was hoping to get some experiences from others who had this procedure and had the muscle removed - which is where I am assuming the pain is coming from.  How long did you expereince the upper chest pain?

Thank you

 

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45_dps's picture
Replies 4
Last reply 1/26/2017 - 1:52pm
Replies by: Anonymous, Linny, Marksa2570

Hi,

Today I received my treatment plan and we are happy with it. I would like to hear comments and input...please.

Stage 3 melanoma (found in the lymph nodes of my neck) without a known source (skin-based source was either beaten by my immune system or I picked it off because I'm slightly obsessive compulsive disorder (OCD)).

Therapy: Complete lymph node dissection in the area. Then IPI / Yervoy (10mg) for 2 years (starting every 3 weeks then down shifting to every 3 months).

Holding back on Keytruda in the unlikely future event of a recurrence then I would be given it.

DanSanDiego

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Anonymous's picture
Replies 4
Last reply 1/26/2017 - 11:02am
Replies by: Janner, jennunicorn, Anonymous

Hello,

I already posted yesterday but i am very confused. I have a very high risk of getting melanoma once of multiple times in my life (p16 gene, just discovered).

I always if I watched my skin very closely and be vigilant, I wil catch it very early. But yesterday I was researching some stuff, and discovered that a mole can exist in the dermis too.

All of a sudden it feels like it doesn't matter anymore, because when a mole like that starts to turn into melanoma, and it is already 0.7 deep for example, I have a melanoma of that depth immediately.

Am I right?

I am sorry but I'm freaking out. It is feeling like I don't have control over the situation anymore. I just found peace by having this high risk, the thought of catching it early gave me some control. Now that is gone, because  I don't know if one or more of my moles are also in the dermis...

 

 

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Dear all,
I have the following question to community:
I have melanoma (Braf mutation) and now I have metastasis in spine L2 only.
Doctor has advised to make Stereotactic Body Radiation Therapy (SBRT) in L2
with the following dosage : 5 fractions with 4 Gray per fraction (20 total)
From my searching via internet I guess that it’s not enough in case of melanoma, I mean dose per fraction and total dose.
Did someone have that experience with radiotherapy in spine?
Pls advice

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snow white's picture
Replies 10
Last reply 1/25/2017 - 10:57pm

Dad saw the infectious disease doc today.  Doc does not feel he has fungus, but they will test the spinal fluid for it along with the LMD.  He goes tomorrow for the spinal tap.  In the meantime, Dr. Freeman (Hamid) wants to start Dad on Ipi (Yervoy) possibly next week.  My mom was a bit freaked out when she read the side effects, death being in the first paragraph.  But, i told her that all drugs have side effects, don't read the side effects, deal with them as they come.  So my mighty Warriors, what do you think of this plan?  Is this the expected next step after 5 treatments of Opdivo?  What do I need to know? anything to look out for? Dad tolerated Opdivo with hardly any side effects.

Any and all thoughts would be greatly appreciated.  Of course I am feeling a bit nervous about anything new, but I also know that we must move ahead with treatment in order to kill the Beast.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/25/2017 - 9:11pm
Replies by: Janner, jennunicorn

Hey!!

I noticed a new mole on my leg.

Now I am wondering. Can melanoma pop up out of nowhere and have an invasive depth from the first second? For example a depth of 0.6?

I don't really understand the progression of melanoma so I would really like to hear from one of you.

Thanks so much!!

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Aloha14's picture
Replies 5
Last reply 1/25/2017 - 7:32pm

Today I had the seromas drained again (2ne time) and this time the surgeon was more aggressive about it~meaning she went in from different angles and also drained a 4th one that I thought was either muscle spasms or scar tissue. That was 5 hours ago and even with a compression bandage and compression shorts, it's almost filled up again.

I don't understand why my body can't drain this stuff?

Next the surgeon wants me to get a repeat ultrasound so she can look at the seromas again since the draining. I may have to have radiology drain these while under ultrasound rather than having the surgeon just use a still picture. 

 

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