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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Beezer's picture
Replies 7
Last reply 7/25/2015 - 8:45am

Just one hour ago I got the news from my brother in law, that my darling sisters fight is coming to an end, she had only one keytruda infusion but had deteriorated so bad in the past two weeks that after scanning her a few hours ago they informed my brother in law that she is too far gone and there is no point with the keytruda any longer as my darling little lamb had lost her battle and now must go back home to die, as I write these lines I am utterly shattered I really thought this drug would help extend her life it's even harder for me right now as she lived in Austrslia and I'm in Ireland, I had hoped so much to go to see her soon but my husband was hospitalised with a pericardial effusion and he's not well so I am nursing him and feel so so useless no being able to hold my sister and tell her how much I love her Oh God I'm so sorry for my emotional outburst at the moment but I'm sitting here in the dark and am torn in half. If anybody is reading this and knows anything about how long she might have I could prepare the rest of our family tomorrow as we all live here. She has lost the use of her hand and legs and is sleeping a lot and her husband ( my hero) told me that she really does not know what's happening as her cognitive awareness gone too, he thinks this is a little blessing as she very happy in her own little unaware state Thankyou for reading 

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Christine.P's picture
Replies 8
Last reply 7/24/2015 - 2:11pm

I just had biopsies done on two moles and the doctor said both came back positive for melanoma. The mole I went in to have checked is very large - all total about an inch-and-a half around/wide and you can actually see some below the skin. The second was a small, but "protruding" mole on my left arm. 

The doctor did a scrape biopsy on my arm and a punch biopsy on my leg. My confusion is this. The prelimary pathology report gives details for the scrape biopsy - but NONE for the let. I have the full report. What does this mean? 

The doctor did tell me I need to have both melanomas removed (of course) and senitnal node biopsies for both sites as well. 

Any informaiton will be appreciated. Thank you!

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/28/2015 - 7:08pm
Replies by: DianaD

Hello,

I thought I would give this a try. My finance is who I am writing about, not myseld. He is 22 years old and has moles on his body his entire life. He has had them checked around 6 years ago. Well, recently he has been having night sweats every now and then and he also has a couple "holes" on the sole of his foot. I read online that these could be linked to melanoma.. and since he has so many moles that does not surprise me. He also has developed two moles on his scalp that have caused grey hair to form.. I read that those are nothing to worry about but as his fiance and him only being 22 I am FRIGHTENED. I guess what I am on here asking is... because he had these "spots" on his foot and occasional night sweats is he in danger of having melanoma??? We go to doctor in September but so scared to wait that long.

 

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jvictoria's picture
Replies 13
Last reply 7/28/2015 - 11:38am

Hello all,

Melanoma Stage III, I have already distal thumb amputation and sentinel node which came back with two positive nodules.

I'm currently scheduled for Lymphadenectomy 7/31 but have been told it would be a good idea to get scans (PET/MRI) done before; some doctors are saying do scans before, some say do it after surgery. Doing before would mean 3-4 week postponement of the Lymphadenectomy.

Thoughts?

Juan

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/23/2015 - 4:25pm
Replies by: stars, Anonymous

Good afternoon:

I was dx with stage 1b melanoma last June, had a WLE and SNB based on mitioc rate.  Recently I noticed a small red slightly raised spot on my lower back.  It's further down then where the original lesion was so it's not in my scar.  I have a derm appointment in September so I'm going to keep an eye on it to see if it' get's larger.    Could this be melanoma that has spread from the original spot and would it be red?   

Wishing everyone blessings.

 

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mrsaxde's picture
Replies 4
Last reply 7/24/2015 - 2:15pm

After getting what my doctor called a "mixed" response to Yervoy, he decided to start me on Keytruda. My most recent scans, the last being a CT scan in May, revealed that internally, my disease appears to be stable. There is one lesion in my right lung that has not changed since last November, and the CT scan picked out two very small lesions in the same lung that were not present on a PET scan that was done in February. But the doctor said they were so small that they may have been there, but they were too small to be caught by the PET scan.

So internally there doesn't appear to be much going on. But I keep getting new skin lesions, which is why the doctor decided to go ahead with Keytruda. A couple of lesions that have been there for a while don't seem to have gotten any larger. In fact, they may have shrunk ever so slightly. But I've had another 4-5 small lesions appear near the site of the orginal excision.

Anyway, I'm looking to hear from people who have received Keytruda following a partial response to Yervoy. What response did you get to Keytruda? From what I've read, the response rate for Keytruda is lower than that for Yervoy. But if you have at least some response to Yervoy, does that mean that you'll have at least a partial response to Keytruda?

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rabbits68's picture
Replies 3
Last reply 7/28/2015 - 5:50pm
Replies by: rabbits68, Aussielyn, dfeng

3 month scan showed tumor regression in lungs, liver and bone! One has disappeared! I am having a few side effects from the meds. Anyone experienced back pain or joint swelling?  My wbc count is getting low and doctor has mentioned adjusting dosage. I am so thrilled about scan but am scared about wbc level.  Any personal experiences? 

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/25/2015 - 7:15am
Replies by: jpg, Anonymous

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Hi everyone and can I just say what lovely support and people on this site. I have been looking and learning has much as possible to help me through my stage 4 lungs liver mels tumours . A brief on my journey stage 2b 2011 but was left a year prior going to my GP for a year on many times worried about a mole was told it looked ok so a year of that before eventually getting to a dermatologist at our local hospital. Mole was taken for biopsy and came back mel 2b had it removed and was told no other treatment apart from 3 months checks for 5 year and if it came back they would catch it in lymp nodes . Was I wrong I was asking them what if due to be left a year it has already in my body but again was assured it would to to nodes first or if a cell had gone my body would probs kill it off . I asked about a scan to check but no follow ups was advices. I wish I acted on my own instinct due to after 4 years checks and telling them my back hurt and scar only to say it was my arthritis and scar tissue eventually did a scan and now stage 4 lungs liver and scatterd else where. Had a course of ippi scans tom scared due to pain where tumours are so worried if it's grown. Looking at treatment anywhere in world can anyone help am in UK am 43 female with 2 children been told clinical trial next no acces to PD1 or nivolumab in Uk am scared and a trial here is chemo and some other tablet sorry do not have details. I thought chemo was not has good as immunatherapy . Any advice would be apriciated .

scooby123

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Ninniditti's picture
Replies 4
Last reply 7/23/2015 - 9:19pm

Hi all! I am on pembro (EAP) since 6 days now. The first 3 days I was really bad, didn't come up from bed. Very much pain where my tumours are, swetting a lot and felt like having fever. Som itching too. But the fourth day when I woke up, the pain and itching was gone and I am really feeling well, better than for a long time. Has someone of you experienced the same?

Inger

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Gordknight's picture
Replies 1
Last reply 7/23/2015 - 3:51am
Replies by: stars

So back in october i was diagnosed with stage 1a melanoma. Had the wle done and a few minor scares since then which after biopsied turned out to be nothing. Well over the last month i noticed a mole raising and becoming inflammed. I finally got in to my derm today and he removed it and said it didnt look too concerning but he said he also noticed another mole that had changed and was becoming a halo nevus. He checked the rest of my trunk area, found nothing of note and sent me on my way.

What did i do? Stupidly i went online to find out that sometimes a halo nevus forming at my age can mean melanoma is elsewhere on the body or even internally! Needless to say im panicing again. Any advice or info or comfort anyone can provide will be most helpful. Oh and he did remove the halo nevus. Thanks.

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mkirkland's picture
Replies 10
Last reply 7/28/2015 - 7:18pm
Replies by: DianaD, Janner, kathycmc, stars, mkirkland, Anonymous

My story starts out kind of strange... a few months ago my fiance and I were moving around some furniture when I noticed a flat mole/freckle on his side near the ribs that had started changing colors half way through. I stayed on him to make an apt at his dermatologist and thank god he did. He was diagnosed with stage 1 superficial melanoma. It measured I believe 0.2 mm. We had an apt with the oncologist surgeon and they cut a pretty cut chunk. Well, since then he has been on me to go get this mole on top of my right foot looked at. Well, I finally went in and this week I received my diagnosis... stage 2 malignant nodular melanoma. I was floored when I received this report. I got a copy of my path report and on the report it says it cannot rule out metastasis. My apt w/ the oncologist is not for almost TWO WEEKS. So of course I am curious about others with this diagnosis and how was surgery/treatments? I am scared & nervous but at the same time I have faith that God will see me through whatever course of action we must take. Any feedback would be greatly appreciated!    

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Erica A's picture
Replies 6
Last reply 7/23/2015 - 4:16pm
Replies by: tcell's wife, mrsriddle, Anonymous, dentholla, stars, _Paul_

Just doing the yearly checkin for my husband, Ken, who was 10 years NED from Stage 4 in June.  Ken is doing great and has had no significant lasting effects from the cancer or the treatment. - he is still going strong and living a normal life these days with only yearly check-ups.  It is my wish that this will give others hope that there can be long term remission from widespread disease. 

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Anonymous's picture
Anonymous
Replies 5
Last reply 7/22/2015 - 7:49pm
Replies by: Mat, _Paul_, Brendan, Bubbles

So I'm having a bit of weird issue with my left eye.  Over the past few days, I've had pain that seems like it is emanating from the back of the eye.  Not debilitating pain, but requires Advil.  My perception in that eye is also a bit off--particularly my peripheral vision.  Kind of like the first few second after you rub your eye and then open it in a light filled area, except that the eye doesn't get back to normal.  Not limiting, but annoying.  I've also been running a low grade fever and my white count is high (hasn't been high since I had colitis while on ipi).  I visited an eye hospital on Monday to rule out uveitis (which they did).  I'm waiting for the results of my pituitary panel to see if this is hypophysitis.  I'll let the group know.  Hypophysitis is listed as a (low probability) side effect of Keytruda.  I know that others (Brian) have experienced it on ipi, but I haven't seen anyone report it for Keytruda.

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