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
Anonymous
Replies 0

Hello all,

i was hoping some of you wonderful people may be able to advise how you cope with your emotions on being diagnosed.

I was told on Tues that I am stage 1a, I have a WLE scheduled in 6 weeks time.

I am so scared right now and my thoughts are running all over the place.  Counselling for Melonoma has a waiting list, which I am on.

M x

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Replies by: cjm22

After the dual neck resections in December and 2 Opdivo treatments, I finally got a few scans a couple days ago after going to the ER for severe back pain. 

And mel is in my neck, several spots in my lungs, my liver, my spleen, a spot near my umbilical hernia and a nice big bone met on my spine. *mic drop* Oh and they won't call me back about the head MRI so let's assume its there too. All this in 3 months.

Has ANYONE else had it spread this far, this fast? To say I'm devastated is an understatement. 

I could really use some encouragement right now. :'(

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/22/2019 - 8:58am
Replies by: Tracyyy

Hi there,

I’ve been on opdivo for stage 3c nodular melanoma since the middle of last October. I just had a ultrasound done on my right armpit (where my cancer spread to) and it showed one enlarged lymph node. Could this be due to the opdivo causing inflammation? My oncologist wasn’t worried about it being cancer, but I’ll be meeting with my surgeon soon to go over the ultrasound in more detail soon. Just wanting some reassurance I guess. 

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Zoe6565's picture
Replies 7
Last reply 2/22/2019 - 12:10pm

 Hi everyone! 

So we met with our oncologist on Tuesday. She is thinking to switch my husband treatment to braf/mek combo. She thought  there is no visible change in the size of the huge visible Tumor on the shoulder (although according to the ultrasound he did a month ago, 10 cm of the central part of the mass is fluid/necrotic tissue), also one the other subq tumor is bigger, and there are progressing in the lungs( now multiple nodules). But she also said we could give the third ipi/nivo a chance (this coming Saturday). So the plan is third ipi/nivo, then another set of scan on Wednesday, if there is still progressing moving to targeted therapy. Now my questions are?

is there still any hope for immunotherapy to kick in? Any experience?!

how durable is targeted therapy? Any positive thoughts?

we are from Ontario Canada, and from what she mentioned ( funding complications) we probably won’t be able to go back to immunotherapy after trying targeted therapy.

any help, advice or experience would be much appreciated!

many thanks as always 

Zoe

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gopher38's picture
Replies 1
Last reply 2/22/2019 - 9:06am
Replies by: gopher38

Finished my last infusion for my clinical trial: either opdivo alone or opdivo&yervoy.  Lost count, but I think it was 25 infusions.  Last scan was clean, thank goodness.  Next scan is 3 months.  Got to say, I'll be missing my regular infusion-security-blanket a bit, but I'll feel great if the next unaided one comes back clean also.  Only semi-serious side effect has been shortness of breath, and I'll be interested to see (and hoping) that that fades as I stop the treatments.  Too cold and slippery to run outside in Minneapolis right now anyway.  Wishing us all luck.

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Lucygoose's picture
Replies 2
Last reply 2/22/2019 - 9:13am
Replies by: Linny, ed williams

Hi

i am not yet staged, but am at least stage III as melanoma was found in an elarged lymph node without a primary tumor.  I go for my scans early next week and my first onocologist visit a day later  

I have read the patient support documents on this site and a few others and they have great questions to ask the doctor.  However I am interested in what the community has to say. 

What do you suggest a new patient ask the doctor at the first visit?

 

thank you for your support. 

Lucy

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HollyC's picture
Replies 5
Last reply 2/21/2019 - 8:07pm

Hi!

I’m newly diagnosed Stage 3a. My melanoma specialist suggested “wait and see” with scans every 3-4 months. While my oncology surgeon said he would start immunotherapy if I were his sister or wife. 

I’ve been doing a lot of research and talking to several other melanoma patients and I feel that I should move forward with immunotherapy. However...since this is considered preventative as currently I am NED, however no one knows if there are still cancer cells floating around waiting to attack me again. But here’s my question....I know the standard course of treatment for Opdivo is typically 1 year...12 or 24 doses. However, I’m wondering how quickly does the treatment start doing it’s job?   Maybe I don’t really need an entire year of it?  Makes me wonder if a few months of treatment would be enough to make a difference and potentially kill any remaining cancer cells that might be there.  And then of course continue with regular scans.   I would think some is better than none.  I guess my thoughts are...if 12 months of Opdivo is the treatment for Stage 4 with visible tumors then is it “too much” for Stage 3a NED? 

i guess I’m concerned too that if I really didn’t need it now...will it be as effective when / if I should need it in the future.

I appreciate any and all comments! 

Thank you!! 

 

 

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MikeInAK's picture
Replies 1
Last reply 2/21/2019 - 7:02am
Replies by: Lucygoose

Today I met with my oncologist and had my 3rd trip to the "juice bar" for another 240mg bag of Opdivo (nivo).   Two weeks ago right after my 2nd infusion, I had a full body check by my dermatologist as I had a fast appearing lesion on the back of my right hand, and I was a bit paniced.   She punch biopsied it, and 3 other moles.  Was a difficult wait for four days until the pathology came back, but praise the Lord, all were negative for our evil enemy Mel.   I was kinda suprised based on all of the other high risk pathologies.  

So.... Not sure, but I think I am NED, having the primary and 3 lmph node tumors all disected as well as all of the suspicious growths on me removed.   The onc said probably won't do another PET-CT scan for a few months, just stay on the bi-weekly Opdivo infusions, and 3 month checks by dermatologist, and lymph node checks every 3 months.   Also, I am seemingly not having much issue with my Opdivo slug, I feel a bit tired for a day with some mild nausea.  My blood work looks great too for the last three pre-infusion checks.  

It seems like its been a long road since November when this deal with the devil Mel started, and it has been.  But it is nice to see for the time being things are going my way.   

Since following this forum group I see our new members coming in with all of the anxiety and and fear of what road is in front of them, just like I did.   I just want to say, find comfort here from those much further down life's road with Mel, it has really helped me through these wicked few months. 

Peace

 

Stage 3C - Oct. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019. 

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Jenine's picture
Replies 3
Last reply 2/22/2019 - 9:23am
Replies by: swalters1038, Jenine

Hello friends,

I hope this post finds everybody happy and healthy for the moment. Every day is certainly a gift!  

My husband recently finished up a two-year clinical trail.   It seems as if he had a positive response to the treatment and he did not developed any additional tumors and the two tumors he have stabilized and/or slightly shrunk. I believe the term his doctor uses is necrotic. I understand this to mean the tumors are not alive but still there. This being said our surgeon has suggested to remove the tumor in my husband neck.   Has one in his sternum but it’s nearly impossible to remediate.

Would you suggest removing the tumor from his neck? His doctor thinks it would be a good idea as he said if the immunotherapy wears off the tumor could then become active again.  My poor husband is like a pincushion.  He is finally feeling better and recovering from all of the side effects from the two-year clinical trial. Can anybody off or suggestions or questions for me to ask the doctors at Hillman?  

Peace and Love,

Jenine

 

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AlexCmons's picture
Replies 1
Last reply 2/21/2019 - 12:49am
Replies by: MikeInAK

Hello everyone currently 25 male.  Fair Skin. got two moles removed.  One in my back had some odd colors and big but I never noticed any itching or bleeding. But concern since they said it looked concerned.  Also one on my scalp was pink but got irritated cause it was underneath of my hair on scalp any advice? Currently in panic mode.  

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mrsaxde's picture
Replies 6
Last reply 2/21/2019 - 2:50pm

Hi Everybody,

I just had a talk on the phone with my radiation oncologist. The bottom line is that my latest brain MRI revealed a questionable new spot that she said she wasn't sure what to make of. It's very tiny, but it definitely wasn't there on the scan I had pre-radiation just over a month ago. She said that she would defer to the radiologist's opinion on it since they are trained to spot things like that. In addition, one other treated area on my cerebellum is quetionable, and may be showing new activity.

I haven't talked to Dr. Sharfman yet, and I need to get the pictures sent to him, as the local cancer center only sent him the report. But I'm afraid this is going to disqualify me from the anti IL-8 trial I was hoping to get into. That leaves more radiation and Temodar as my only treatment options at the moment.

I've been dealing with this for six years now, and for the first time I'm feeling pessimistic about the future. I'm sorry about whining on here but I needed to vent. I wouldn't call my mood "devastated" but this is a major hit. Thanks for listening.

-Bill

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cjm22's picture
Replies 2
Last reply 2/20/2019 - 6:32pm
Replies by: cjm22, Hukill

We talked to the oncologist about my husband's PET scan from last week! He has been on Keytruda since mid-November and also got one low-dose Yervoy three weeks ago (next one is tomorrow).

Mixed results:

- Most mets have shrunk (in fact, the one near his spine that put my husband in a wheelchair and in the hospital last November has disappeared)

- There is one small, new spot elsewhere in his spine

- The spot in his adrenal gland looks brighter on the scan

- His liver looks a little worse in his blood work

So ... Mixed bag. The oncologist thinks that the new spot in his spine as well as the brighter spot in his adrenal gland could be due to the introduction of Yervoy, since that might have led to additional inflammation. She says it's hard to tell from the scan. The liver issues might also be from the Yervoy.

He will go back for blood work again in a week and a half to monitor his liver more closely.

He will also get another PET scan in three months (barring worsening symptoms in the meantime) to get a clearer idea of whether these drugs are really working for him or not.

She said overall the meeting was positive, but I'm still pretty sad. I was hoping for better news -- that everything had shrunk.

But I guess for now we just keep on playing the waiting game.

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Lucygoose's picture
Replies 4
Last reply 2/21/2019 - 8:26pm
Replies by: Lucygoose, Bubbles, Linny

Hello

i am newly diagnosed.  I had an enlarged cervical lymph node show up about 6 weeks ago.  It was biopsied 2 weeks ago.  I was floored when it came back Melanoma.   I’ve had basal cell carcinomas removed and so go for a dermatologist check every 6 months.  I went back to the dermatologist, he couldn’t find a primary- even in my scalp.  The ENT who did the biopsy scoped my sinuses and throat - no primary.  I go to have my eyes checked tomorrow. 

I have an MRI and PET scan scheduled next week, followed by the surgical onco appt the next day.  I’m really scared.  My best hope at this point is 3A.  

I am having symptoms that could be related to anxiety.  Headaches, GI issues.  Did anyone else have that?  I’m just worried it means stage IV.  

Anyway I am open to advice as to how not to go crazy before I am staged. 

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sing123's picture
Replies 0

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: Anonymous, NSNewf, 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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