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.

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sing123's picture
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Hi all. I am almost at my 11th of 13 Opdivo infusions and wondering if side effects tend to increase towards the end of treatment. I had a backache 2 weekends ago (very unusual for me), immediately followed by a terrible UTI with bleeding. Have taken the antibiotic, felt immediately better and now my back hurts again. 

Has anyone had a UTI as a side effect of treatment? Am thinking of taking cranberry pills but don't know if that will be effective or be advisable with Opdivo (will call my onc doc today). 

 

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo

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Replies by: ed williams

Good morning, I wrote a proposal for experimentation about oxidative diseases (cancer, Alzheimer's, Parkinson's). This experimentation in Italy is not possible to develop because the regulations and the bureaucracy are very complicated. This experimentation can be done both in the medical field and in the veterinary field. It is about using nitrogen as an antioxidant substance and with known protein relationships to see if nitrogen can work as a protein nhibitor on oxidative proteins.

Nitrogen can not be administered pharmacologically because it is not soluble, does not issolve in water. However, a certain pressure melts very well in the blood, in the spinal cord and in the skin.
Extensive experiments at the cellular level have shown that nitrogen is a powerful antioxidant, an excellent anti-inflammatory, a slowing down of cellular development. Furthermore, many relationships are known between nitrogen and proteins. In my research proposal, I explain how you could proceed to deactivate the oxidative proteins, which are the fulcrum of certain serious diseases.

If you are interested in my research, please write me your direct email, so you can send the whole report

Since I was a child, I realized that if I went scuba diving with a cold, when I came up from my dive, my cold would have disappeared. This experience repeated itself many times over the years, and I had heard other divers mention this phenomenon. None of us had an explanation, however. Before I was 30, for a period, I worked as a diver and noticed some interesting things: by diving frequently, my appetite and sleep improved.
Also, in some of my more aggressive colleagues, frequent dives seemed to reduce their aggressiveness. It was only after many years that I started to ask myself why these things happened while diving and I found their relationship to nitrogen.
Starting from the cold - which was certainly not a serious illness - though the cold virus is a very aggressive micro organism, and is more resistant than other, more letal, viruses.
Let’s not forget that all viruses have and oxidative protein component analogous to neoplasia.
Many viruses, starting from influenza, can open the door for tumors. By relating nitrogen with sleep, hunger, aggressiveness and nitrogen narcosis, I suspect that this gas has an important relationship with the biochemical processes of the brain.

I met Fabrizio in 1985, shortly before beginning my work as a diver. At that time, my father was dying of cancer and when I spoke to Fabrizio about it, he became agitated and told me about his adventure: a few years before he had a tumor that brought him on the verge of dying. Desperate, and as traditional treatments had not worked, he turned to homeopathy, which was just starting in those days. Personally, I am diffident about homeopathy, which I consider to be a more refined version of a herbalist shop. A bland anti-inflammatory, an astringent is fine, but from that to claim that homeopathy can cure cancer?
It is a long shot. Fabrizio showed me his case history, as well as some photographs showing the state he was in. There was no doubt that he had had cancer.
But how was he healed? For many years it was right in front of me something he had told me and that I have never taken in consideration, “I went to the sea floor to harvest the seaweed they suggest I take. As soon as I got out of the water, I would eat them right away, raw. They tasted awful, but I felt better immediately, and now I’m cured”.
Of the fact that the seaweed helped heal his cancer, I have my doubts, but what about the nitrogen that entered his bloodstream while he was harvested the seaweed?
Nitrogen is an anti-oxidant, it could have worked as inhibitor in that terrible oxidation process which is cancer. This would have been more plausible, knowing fuòò well that “one swallow does not a summer make”.
Fabrizio had a linfoma.

On the Island of Okinawa, and in other surrounding islands, the lowest percentage of oxidative disorders in the world is present. In particular, on some islands inhabited by fishermen, the percentage is extremely low.
This phenomenon has been noticed since the 70s, but no-one has been able to give it a logical explanation. an essay found on the internet talked about, “Low stress levels, optimistic people, diets based on seaweed and raw fish”. My manners stop from commenting further. Just looking at a map, one can see that the island of Okinawa il the target island of the Amami Archipelago. These island have always been the centre for jewelry of sea dedicated to oyster farming: these farm are about 20m deep, take seven years to produce pearls and are taken care of by “ama fishermen”. Up to the end of the 40s, they swam down in apnea, then they began using compressed air hookahs.
Even at ust 20m deep a person cannot stay underwater for long.
This caused an alternation among local population. And how many of the hundred-yeas elders are women?
Here I present my thesis: at over 12 meters deep, nitrogen enters the bloodstream, a strong anti oxidatint, anti inflammatory, reducer of cellular reproduction. With frequent dives, if there are no heart problem, one could live to be over a hundred.

Besides the above-mentioned characteristics, there are other many known relationships between nitrogen and proteins, but nitrogen has been studied only regarding its ability at a cellular level. Hyperbaric medicine, seeing that nothing significant came from blood tests carried out on divers, abandoned all research, marking nitrogen as an “inert gas”, helium is also an inert gas, but it certainly does not have the same level of cellular action that nitrogen does. But it shouldn’t be taken for granted that something can’t be found out from blood tests on healthy individuals, which normal blood count levels. Also, excluding an air embolism, nitrogen is not a pathogenic agent, and a modest amount of this gas in the bloodstream, after a dive, might easily not be seen. I know that during dive the dominating gas in oxygen. The oxidation state increases, erythropoietin and other oxidative proteins, cellular reproduction increases and a sympathicoblastoma situation arises. This phenomenon only regards “compression”, Once the dive is finished, blood count levels return to normal, while nitrogen remains in the blood for hours, reaching all areas  of the body. Nitrogen is then disposed of, after diving, through respiration.

This is the proposal I’m making researchers: bubble in a hyperbaric chamber 20m deep (or else the nitrogen will not dissolve) nitrogen in blood samples taken from people with cancer, with a well known tumor maker. The marker qualifies the oxidative proteins released by tumor cells. After the nitrogen repeat the marker. If the nitrogen was able to deactivate the oxidative proteins, we will have discovered the secrets of the elders in Okinawa, and, at the same time, will have opened door for a new and possibly powerful anti-oxidant therapy.

An acceptable compromise regarding leukaemia: leukaemia sufferers suffer from haemolysis and must undergo blood transfusions.

It would be possible to proceed in the following way: a diver, with blood group compatible with that of the patient, will make a dive with a compressed air breathing apparatus. The dive must be, as it is said in the jargon, “at the limit of the safety curve”, so as to enrich the blood of the diver / donor as much as possible with nitrogen.
The following diving times and depths must be achieved: 45 minutes at 20 metres depth, or 22/23 minutes at 30 metres depth, or 12/13 minutes at 40 metres depth.

The transfusion must be done in the minutes immediately following the dive. Nitrogen is disposed by breathing in the hours following the dive, therefore it is very important to transfuse the patient as soon as possible after the donor’s dive.
This system can be used with all cancer patients suffering from haemolysis, or from a significant reduction in red blood cells.

Being able to use a compressed air hyperbaric chamber, instead of the divers it will be possible to use normal voluntary donors, thus improving the number of available donors. To enter the hyperbaric chamber, however, the donor should not suffer from severe heart or kidney problems.

If, after these transfusions, the blood parameters will show improvements, confirming a reduction in the sedimentation rate of the C reactive protein and a decrease in the white blood cells, the patient can be placed in a compressed air hyperbaric chamber, at a simulated depth of 20 meters for 12/15 minutes, twice a day. The sessions in the hyperbaric chamber must take place at 5 / 6 hours apart from each other.

With these transfusions, the intake of nitrogen in the blood of the sick will not be high. It is advisable to do more than one transfusion per patient. However, one thing is certain that this type of transfusion is not absolutely dangerous.
Considering the characteristics of nitrogen (antioxidant and anti-inflammatory) and since the tumours are oxidative diseases, why not try?

It is an experimentation that requires the collaboration of a veterinarian, an expert transfusion
doctor and a hyperbaric doctor.
It will be necessary to recover a medium or large sized dog with a tumor.
I'm not talking about contaminating a dog and making it sick, it's clear, just getting a dog already sick.
The animal will be sedated and a quantity of 100-200 cubic centimeters of blood will be collected, which will be additivated with the right quantity of anticoagulant.
This blood sample will be placed in a pressure-resistant vessel and will be equipped with an
overpressure valve set at 2-3 atmospheres.
Compressed air added with nitrogen will be bubbled in the blood sample in order to enrich it with nitrogen. Once this is done the container will be decompressed and the blood will be re-introduced into the dog's bloodstream. When the blood has almost completely entered the blood system, another blood will be extracted from another vein and proceeded as it was done with the first blood sample. And so on until at least half of the sick animal's blood has been treated.
The analyzes carried out in the following days will tell us if the nitrogen, a powerful antioxidant, has managed to do something positive.
Thank you in advance for your kind attention.

 

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Anonymous's picture
Anonymous
Replies 0

Good Morning,

i noticed a small slightly raised mole back in June and I have been keeping an eye on it. It hasn’t grown in size, it’s symmetric and about a little bit smaller than a pencil eraser. However I can tell there is slight pigmentation with the center being a more dark brown color. I’ve been reading all that I can on Melanoma and everything written says anything new definitely needs to be checked out. My question is, can a melanoma be small and symmetrical?

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dessie's picture
Replies 2
Last reply 2/20/2019 - 9:53am
Replies by: Bubbles, BrianP

Hey all,

There was the light at the end of the tunnel and I am there!!.  Last infusion of Opdivo yesterday, PETs have been negative... Praying for everyone here to destroy our Melanoma!!

Thanks to all for your support and answering questions, and just plain being here to share our journeys with one another.

May all our hopes and dreams come reality!!

Dessie

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TexMelanomex's picture
Replies 4
Last reply 2/20/2019 - 11:15am
Replies by: jbronicki, Bubbles, BillB, Anonymous

Hey Warriors,

I just got back from round 24 of Pembro, all labs still great and was finally given an end date for treatment. I have 9 rounds left for the full protocol so I should be done with the infusions in August or at the latest in September assuming we stay strict to once every three weeks. Can't say I'll miss the "juice bar" as MelanomaMike calls it, but that's still several months away.

I hope you are all staying deep in the fight and winning!

 

Tex

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Bubbles's picture
Replies 5
Last reply 2/20/2019 - 11:13am

I hope your pain has become more manageable, Jeremy.  I hope you are no longer a red hot mess, and just a red hot momma, Julie!!!  AND....JAAANNNNNNER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  Nuff said.  Love to all.  celeste

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mclyde's picture
Replies 1
Last reply 2/19/2019 - 7:35pm
Replies by: ed williams

I had a 7mm punch biopsy done to remove a suspicious mole (6mm x 3mm) and the pathology report came back as 

MELANOCYTIC NEVUS COMPOUND TYPE, WITH SEVERE ARCHITECTURAL DISORDER AND SEVERE CYTOLOGIC ATYPIA OF MELANOCYTES. SEE NOTE.

NOTE: The lesion shows worrisome features for evolving malignant melanoma in-situ.  Immunohistochemistry for MART-1 supports the above diagnosis. The lesion extends to the margin.

 

I am going back next week for an excision to remove 5mm margins.   

Is this considered a melanoma in situ (Stage 0 ?)  that is evolving or a dysplastic nevi with characteristics that suggest it could evolve into a melanoma (pre-cursor) ?  I understand treatment would be the same and if it were melanoma has a ~ 100% cure rate.

What questions should I be asking when I return?

While they biopsy the tissue taken from this excision?  

does MART-1 make it more likely that it is melanoma in terms of a differential diagnosis?

Would followup be different?

Thanks in advance!

 

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Krista87's picture
Replies 2
Last reply 2/19/2019 - 5:03pm
Replies by: Bubbles, Krista87

Hello,

I am extremely anxious awaiting on my biopsy results. I notice a slightly raised mole on my upper thigh back in September and instantly new something wasn’t right because I do not have any raised moles. I kept putting this off and finally went in to see a Derm and she stated she wasn’t concerned that it was raised.. but for my skin it is concerning because I do not have any raised legions. She was not personable, came in with the lighted magnifine glass looked at it for literally 5 seconds and said she saw some pigmentation so she was going to biopsy it. I asked her if this could be melanoma and she said no and that I don’t have anything to worry about and kept telling me not to worry that she sees hundreds of moles a day and mine isnt anything to worry about. I’m sorry but if she thought it was nothing to worry about then why did I get a biopsy done? I’m extremely anxious over this and had the biopsy on 2/15. She said my mole is perfectly circle and symetric but I have been reading that doesn’t necessarily matter. I just know that this is NOT normal for my skin. God forbid this is Melanoma I am hoping this is caught early. I have attached a picture of my raised lesion/mole. Any perspective would help me so much while I wait. Thank you all

  Not sure how to upload image.. 

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cjm22's picture
Replies 2
Last reply 2/19/2019 - 5:46pm
Replies by: GeoTony, Zoe6565

My husband has been on Keytruda since mid-November, and we added low-dose Yervoy to that just three weeks ago. On Wednesday we'll find out the results of his latest PET scan, which will tell us if Keytruda is working or not.

In most ways he seems like he's improving (a little more energy, much better mobility), but his MRI in January showed a new spot in his brain. The spot is very small and it's possible it cropped up before he started Keytruda, since they were comparing the January MRI to his last MRI in August, which did not show the new spot. But like I said, he only started Keytruda in November. But there are also other possible explanations for his improved mobility (which has seemed like the biggest clue that Keytruda is working), since he did get a steroid epidural when he started Keytruda, too. He is getting SRS for the little spot in his brain tomorrow.

I'm really nervous. I wish I could just fast-forward to Wednesday and stop dreading it. I feel like I should be optimistic -- he definitely hasn't gotten WORSE since starting Keytruda in November, and really in most ways seems better -- but the improvement has been pretty slow and he is still extremely fatigued (sleeps 15-18 hours a day) and experiences nausea every day. Our life is definitely still very much in "sick person mode." I guess that could also just be the immunotherapy doing its thing, though.

Sigh. I don't have any questions. I'm just nervous and sad. I knew you guys would understand.

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HeidiZ's picture
Replies 7
Last reply 2/19/2019 - 7:04pm

Diagnosed in April 2015. Progressed to Stage IV February 2016, had 4 doses ippi/nivo and there after 16 of keytruda. Stopped treatment August 2017, my body was to inflamed so I had my first pet scan and 2 others since stopping treatment.  I feel truly fortunate that my last three Pet scans show no uptake but wondering when counting 5 years out do you start counting from last treatment, or when I first became stage IV. I started my first treatment March 2016 so next month it will be 3 years since then.  Of course, I’m also waiting for the other shoe to drop every time I go for my scan and feel like I’m only living six months at a time. The scaniety and waiting for that call with the results is the worst.  Always Praying for all cancers to be wiped out of this world. HeidiZ 

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Zoe6565's picture
Replies 13
Last reply 2/18/2019 - 8:33pm

Hi everyone!

It's my first time posting here on behalf of my husband! for the past few months since my husband progressed to stage 4, this community has been a tremendous source of help and hope for both of us!

quick background:

First diagnosed Sep 2017, 6 mm nodular melanoma on scalp

April 2018: progressed to stage 4 with bone mets on right shoulder

August 2018: Successful surgery to remove the shoulder mass

September 2018: clear scan/brain MRI

October 2018: 2 big lumps started to grow very quickly around the surgery site, Ct scan confirmed 3 big masses around 5-7 cm (this time very agressive).  following CT and MRI confirmed nodules in lungs, scalp and small mass in the brain.

After this point, he started the IPI/Nivo combo, not too many major side effects except for Liver enzymes elevated, which lead him stop the treatments and go on prednisone to calm everything down. after the first treatment the mass on the shoulder grew very very large. So his oncologist decided to resume the treatment (he got the second infusion about 3 weeks ago). We noticed this huge mass has been now softer to touch and quite smaller (he also had radiotherapy to the mass due to it's rapid growth).

Now my quistion is about the spot in the brain. the second MRI on Feb 8th showd it has increased in size from 4mm to 9mm, nothing new!

his doctor is suggesting,

Wait and watch for the third treatment to work!

Get the spot treated with radiotherapy!

thanks everyon for reading this, any thoghts would be helpful!

God bless you all

 

 

 

 

 

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SHERRY BOSSERMAN's picture
Replies 1
Last reply 2/17/2019 - 6:18pm
Replies by: Gene_S

Hi Everyone:

My name is Sherry, I'm a 57 year old female with aggressive Stage III melanoma of the head and neck.  Of course I always have to be extra special, the cancer spread into my lymph nodes. 

Very briefly the melanoma started as a clear pimple on top of my head, the doctors all thought it was basil cell carcinoma until the punch biopsy.  We were playing in a whole new league then.  I ended up having a 12 hour surgery, with a complimentary skin graft on my scalp, that was taken from my thigh.  Still did not get all the cancer.  Due to a MSSA infection from the first surgery, treatment was delayed for 9 weeks and the cancer that originally was trailing on the right side of my head, had now infected the lymph system on the left.  Immunotherapy of Yervoy/Opdivo was started.  I've had four rounds and aside from the hives I continue to get I've tolerated it well.

I do have a few questions...has anyone else gotten hives?  If so, how do you manage the itching, I scratch in my sleep till I bleed.  Cortisone cream just doesn't work, and benadryl makes me feel like a zombie at work the next day.

Also, after the first treatment, I developed a golf ball size lump in the front of my throat, it doesn't really hurt, but the area seems to be swollen slightly.  I've had my thryoid tested 3 times and it comes back fine.  No one seems to know what this is...a lymph node that's angry maybe?  Lymphadema?

Any thoughts would be helpful.

 

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Ridingaroundwith27Jennifers's picture
Replies 6
Last reply 2/19/2019 - 3:01am

Hi Everyone,

I've been off the board for a while.  

I've struggled with wanting my spouse to understand but he can't because he isn't in my shoes.   

Physically I'm doing OK.  Melanoma and the treatment have changed me.  I have some limitations which I didn't have prior.  I wasn't expecting that.  I thought it was either I'd be dead or I'd survive and get back to my life.  I didn't envision that I'd survive and be physically limited or that I would have to change my life, or give things up to survive.

The new mental challenge is when to stop Opdivo.  Stopping too early means risking another brain met, but I can't stay on it forever.  The next set of scans will determine if we maybe stop in April.  That's great news but it comes with a case of the "what ifs" and a new set of anxiety.  There's a feeling of safety being on it - it's killed the beast and is keeping it at bay.  

Thirteen years ago I went to that feeling of safety.  The suspicous mole was out.  The margins were clear.  I was safe.  (Not really but the docs and I thought I was)  Ten years of moles screens and follow up appointments and all was good.  Then it wasn't good.  It was really, really bad.  You all know the story.  I'm lucky.  Treatment worked.  Sure there were some bumps in the road but I'm still here.  Now it's on to the new future - whatever that is.  

I don't have any words of wisdom for you and I'm not looking for advice.  Just thanks to you all for listening and sending good wishes to you.  This community is great and I appreciate you.  Dying is easy.  Living is hard.  Choose the more difficult path because you are great and even though cancer may change you we all still love you.

Good wishes to you and hang in there with me,

Jennifer

 

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https://www.outsideonline.com/2380751/sunscreen-sun-exposure-skin-cancer-science

             "Originally, [Linqvist] was studying blood clots, which he found occurred less frequently in women who spent more time in the sun—and less frequently during the summer. Lindqvist looked at diabetes next. Sure enough, the sun worshippers had much lower rates. Melanoma? True, the sun worshippers had a higher incidence of it—but they were eight times less likely to die from it."

My apologies if I’m re-running this article, I haven’t seen it discussed.

I think it is a great example of how easy it is to cite plausible connections in an entertaining story. What is scary is this author isn’t even trying to mislead, where others mix in source material of various quality without being clear about it.

That said, who doesn’t feel that sunlight is important to the body and soul? For my scientific survey, what is your attitude toward the sun, post melanoma, or your “solar diet”?

A.   Sun is death, I avoid direct contact. Give me vitamins and indirect lighting only.

B.    I nibble on sunshine, and won’t wear a burka or safari hat, but mostly agree with A, above.

C.    Guilty pleasure, treated as guilty pleasures are. I take what I need and try not to beat myself too much up for that.

D.    Life goes on, baby. Improvise, adapt, overcome. I’m outside so much I get lots of sun even despite all my diligence, I have several safari hats, and am developing a breathable gender-free burka concept.

E.    Same as D, above, baby. Except I actually do try to be outdoors less. I may or may not be successful, but I try. I live in long sleeves and usually don’t call strangers “baby”. 

F.   I play with fire. Or fire-ball, whatever.  I know. I know. I just love a healthy glow. Don’t judge me. I was told this forum is a safe space.

G.   See F, above. And I still use tanning booths, for personal and/or professional reasons. I’m not sure why I’m on this forum.

H.   You people are all fools. Damage is done. “G” and I are  going outside for a cigarette. Let’s pour shots when we come back!

I.    Uh.....It's winter. Check back with me in 4 months, Florida man.

Feel free to make up your own answer, for science.

Happy Sunday.

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MrsPoppy's picture
Replies 1
Last reply 2/16/2019 - 4:42pm
Replies by: SABKLYN

Hi I just found this site. I'm happy I did. It's nice to see so much care and support happening. I wish you all well.

So, I suppose the title says it all. 2 of my fingernails have a line running down the center. I've noticed 1 recently and the other has gotten wider and slightly darker. I'm mildly concerned after consulting dr Google which I know isn't the greatest thing to do.

Both lines are on my right hand. One is my thumb and the other is on my pinkie. Neither are particularly dark or wide. Just odd I suppose as I feel they came out of nowhere and are mildly changing their appearance.

Does anyone have any experience with such a thing and should I be concerned?

Thank you for your time.
Poppy

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