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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arthurjedi007's picture
Replies 17
Last reply 3/13/2015 - 1:27pm

Wasn't going to post this but since the previous two folks had good news I figured to make it three.

Got the results of my head scan. This time it was a ct instead of an mri so the angles were different when they tried to compare. But the doc said it looked smaller and there is no new stuff. So rescan this time in 6 months instead of 3. Sounds like a wonderful miracle and relief to me. They are going to do my 8th pet scan in 6 more weeks so about 5 months from my last one instead of 3ish months.

Way better than last year this time my med onc said if the tumor in my t10 grew a hairs breath in a certain direction I would be paralyzed. My surgeon was saying anyone else receiving that much spinal cord damage at once would already be paralyzed. One twist lift turn too many and I would be paralyzed and later they said they couldn't do the surgery. So yeah way better than this time last year. I'm not sure why I've been so blessed but I think I'm a walking talking miracle. Lots of tumors to get rid of but at least I'm still here in the fight.

Artie

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G-Samsa's picture
Replies 3
Last reply 3/13/2015 - 12:13pm
Replies by: arthurjedi007, Bubbles, Mat

I am sadly completing a successful 2.5 year run on the Anti-PD1/Ipi combo trial.  Although the visceral disease remains in-check, several mets have suddenly appeared and have taken hold in fatty tissue areas.  It's as if there are two distinct systems --- one in which the immune system is still effective at maintaining a tolerable tumor load, and one where it is beginning to lose its grip.  A reinduction of the combination drugs has been (after three infusions) unsuccessful at getting the immune system interested in these new tumors.   Although the new tumors are not life threatening, the doctors feel that it is important to have them removed.  The inaccessibility of the tumors (entangled with nerves, etc) suggests the need to "shrink and pluck", that is, reduce their size so that they can be surgically removed.   Since I am Braf positive, the outlined plan from the medical teamis to exit the trial and move me to a Braf/MEK inhibitor treatment regimen ( presumably it will shrink the tumors enough to be removed).  

Having been under the umbrella of a very effective treatment, I am clinging to my prior treatment like a cat on a cliff, and have expressed some reluctance to chase something not life-threatening, by forever giving up access to a treatment that has worked so well.  I've read many entries here about the limitations of the genetic treatment (that are typically effective for a limited period).  I've also heard it suggested that the Mel can sometime returns with a vengeance.  The doctors have talked me off the ceiling, indicating that together with the prior long-term immuno-therapy treatments, they expect the Braf/MEK to have a better long term effect, and indicate if it loses its grip, both ipi and anti-pd1 remain options (albeit as separate treatments)

Bringing this to the attention of the group for a couple of reasons--

I'd like feedback on whether this sounds like a reasonable approach (I believe we all have developed expertise fighting the disease -- and collective thought might be informative/supportive), also looking for experience/evidence that genetic treatment on top of immuno-therapy makes for a more durable response. I was thinking that I should suggest a set short-term use of the Braf/MEK, just to address the tumors,  hoping this would keep my powder dry, preserving the ability to use Braf/MEK at a later date if the critical tumors begin to stir.  

Thanks for your thoughts

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/13/2015 - 12:02pm

I've had four doses of PD1 and just had my first set of scans, there was some growth in a met in my spine and a new 9mm lung met and a new 1.3cm adrenal gland met. I have mets through body in the bones and in the lungs other than what I have stated everything else was stable ( no growth). Any ideas on what I should do from here, any advice would be helpful.

Thank You

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clthomas2131's picture
Replies 0

Question..... has anyone had a vacora biopsy of a neck node? I had a fine needle, and was told they were going to do a core biopsy but they called to say I am getting a vacora biopsy done and I would be knocked out for it.... I can't seem to find much on it at all for neck biopsies.

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Bubbles's picture
Replies 3
Last reply 3/13/2015 - 9:18am
Replies by: kpcollins31, _Paul_, Mat

I know his op ed in the NYT touched many of you.  I felt lucky to find another piece he wrote before he passed.  Perhaps you'd like to see it too?

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/doctor-writer-father-cancer-patient.html

Live well. Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Lyric17's picture
Replies 28
Last reply 3/12/2015 - 10:58pm

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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aus123's picture
Replies 7
Last reply 3/12/2015 - 9:26pm

Hi All,

Firstly, thankyou for taking the time to read my post and for sharing your personal stories on this forum.. it is immensly helpful for me in this time of need. 

I am after advice for my father who is stage IV melanoma. A little background:

2005 - Melanoma discovered in heel of foot, large part of the heel is removed and lymph nodes in legs and groin are removed as a precautionary measure. 

March 2014 - Woke up unable to move left side of body properly. Taken to emergency to find brain tumour and multiple mets in stomach and in lungs.
Brain tumour is successfully operated on and removed. Round of radition is undertaken to make sure it is all gone (has since not returned). 

May 2014 - Yervoy/Ipilimumab round started.

Nov 2014 - Yervoy/IPI is not deemed not successful and more mets develop in stomach.

Dec 2014 - Taken to hospital with extremely low blood count. Large tumour in stomach is bleeding and stays in hospital for 16 days to undertake radiation as surgery is not as option with blood levels topped up daily. Tumours now found in intestines.

Jan 2015 - Stomach tumour is still bleeding but has slowed down and blood levels stay high for longer periods of time. Extreme pain in shoulder reveals a large tumour inside the bone and radiation round is started to help reduce pain.

Early Feb 2015 - We are extremely lucky to be given access to PD-1 Nivolumab which is not listed on the PBS (Australia's version of the FDA) based on compassionate reasons as oncologist said we dont have many other options. 

At this stage he is not eating a lot at all and has woken up multiple times with severe pain attacks in the stomach and back. We are told that testing for PD-1 success will not take place until the end of the treatment (which i believe is still an excrutiating 10 weeks away) but tumours are now visable through his skin in his back and also on his stomach that the oncologist said is in his liver. My dad said he is feeling better overall but with tumours still obviously growing (fast!) my question - is there still hope that he can have a reaction to PD-1? He has recieved at least 4 doses of the drug on a weekly basis and I would like to know what everyones experience has been with reaction time and if there are any tell-tale signs that it is working?
During this process I have fallen pregnant with my first child and my fathers first grandchild. It is definately challanging to go through one of the saddest and happiest times of your life at the same time but all in all we are very positive and thankful for this special time we have. 

Thanks.

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/12/2015 - 6:25pm

Hi Everyone,

 

First and formost thank you all for the valuable information you share .

I am allergic to contrast. My doctor orders CT scans for me "without " contrast. I am worried that the radiologist does not get a "clear" picture if I have any tumors or swollen nodes.

Should I be worried or can radiologists still determine if there are tumors/swollen nodes "without" contrast on my scans. I appreciate any opinion you can give me.

Thanks

 

 

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Marianne quinn's picture
Replies 5
Last reply 3/12/2015 - 5:00pm

My husband was diagnosed at Stage 3C in September 2013. He had melanoma under his thumbnail which he dd not investigate for at least 1 year. After a partial amputation and lymphendectomy, he was NED  and entered the clinical trial of yervoy vs interferon trial.. He was in the 10 mg arm ( there was also a 3 mg arm). We were very nervous about the high dose and the side effects. With diet modification and occassional use of OTC medication, he weathered GI effects without needing steroids. To our dismay in March, his CAT scan after the induction phase of 4 infusions showed a small metastasis in his liver. He was removed from the trial. We were absolutely devastated thinking the ipi did not work. In May2014, he had microwave ablation of the single metastasis. We were pleased to find out that at the time of surgery, the metastasis was slightly smaller than the CAT scan indicated 6 weeks before.He became NED.

Monday his CAT scan was clear. Thinking how it was last March, I am so grateful and appreciative of this forum that kep me informed and positive. We are sure that the Yervoy worked and he just had what is termed as a "unconventional" response.  

I know that people are scared of Yervoy, but it can work. It seems unfair that you have to "fail" Yervoy before you get the anti-PD1s. However, Yervoy might work for you. Even if you "fail" it, maybe getting the anti- PD1 afterwards might be more effective after having the Yervoy. Just speculating, but the medications work in different ways so who really knows? 

Just for interest, he had his last dose of ipi in March 2014. He still has a sensitive GI tract, but only to whole wheat and milk. He can drink lactaid.  He makes a smoothie of bananas, applesauce, and Greek yogurt with active cultures daily. He believes that repopulating his GI tract with beneficial bacteria helped keep the diarrhea under control. We think he has a permanent change to his immune system which is the goal of therapy. Hope we are right.

Best of luck to you all. 

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MindyD's picture
Replies 12
Last reply 3/12/2015 - 4:35pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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arthurjedi007's picture
Replies 5
Last reply 3/12/2015 - 4:21pm

Anyone had issues coming off fentanyl and did anything help?

i was on the twelve patch a couple weeks then the 25 for a couple months. I was having lots of stomach issues and diarrhea I thought was due to the radiation. So much so they did a ct of the abdomen and pelvis. Granted the Imodium did help the diarrhea a lot. Not sure why but that day I decided to drop down to the 12. Low and behold my stomach issues were a lot less and when they got the ct results they could not find anything wrong. So after 6 days on the 12 I felt weird. Like very agitated sleeplessness. Like my skin was crawling. So I decided to go back to the 25 but after only a few hours my stomach started messing up so switched back to the 12. Still lots of agitated sleeplessness so 2 days later I took the patch off and have been without for 2 days. But the sleeplessness agitation skin crawling continues. Not all the time but usually off and on especially in the evening and night. 

I googled and apparently lots of people have this issue. But the only advice seemed to be to drop to a 5 patch but they said that didn't really help either. My pain or nerve tingling in my left foot and pain in my left hip and left lower leg are tolerable but this sleeplessness is crazy. Also read the foot nerve tingling others have when coming off fentanyl. Here I thought it might be nerve damage from radiation or the keytruda or a tumor pressing on a nerve only to find it really might just be part of the fentanyl withdrawal. Other advice was pretty much tough it out and hope it subsides which could be weeks or months.

Very crazy stuff. Any other advice what to do? I'll be seeing one doc tomorrow and my other one the next day but I've found it best to try and resolve things like this myself cause they tend to go way off track with more meds which I'm going to refuse from now on again. For example I was having massive syatic nerve pain in my left leg when I sat so they kept throwing stronger pain stuff at it and started radiation of the t4 and t5. Finally I became coherent enough to google and got a tailbone coxic cushion and low and behold instant relief when sitting. So yeah best to educate myself first in my opinion. Granted he's a great radiation doc and I would have been paralyzed without him but things like this are not his or his wonderful nurses specialty from my experience. Anyway I'm rambling. Sorry. 

Artie

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suzanemine's picture
Replies 1
Last reply 3/12/2015 - 11:39am
Replies by: Anonymous

Some apoptotic bodies (Figure 1A). Apoptotic bodies are approximately in the size range of platelets (1-4 am), whereas micro particles are much smaller (< 1 am). Annexin V/FITC staining showed that both apoptotic bodies and micro particles are positive for annexing V (Figure 1B). In contrast, staining with PI showed that apoptotic bodies, but not micro particles, are positive for PI (Figure 1B). Furthermore, apoptotic bodies stained positive for DAPI, PI, and lection, as demonstrated by RevTest fluorescence microscopy (Figure 1C). These findings demonstrate that EC-derived apoptotic bodies exist as small membrane vesicles, which contain DNA. Circulating EPCs play a role in the repair of injured vessels and ischemic or damaged tissue.10 because endothelial injury is often associated with apoptosis, we have investigated whether apoptotic bodies from mature ECs could affect the behavior of adult EPCs in vitro. We demonstrated here a stimulatory effect of HUVEC-derived apoptotic bodies on the number and.

For more information, visit this site >>>>>>>  http://healthoffertrial.com/revtest-review-free-trial/

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rjwilson2015's picture
Replies 3
Last reply 3/12/2015 - 12:46am
Replies by: MattF, rjwilson2015, Janner

Just got the second report back no melacytric  proliferations found deeper tissues examined. What would this mean ?

 

then is goes on to say intercorneal hemmohrage in thumb nail ?

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JerryfromFauq's picture
Replies 2
Last reply 3/11/2015 - 9:29pm
Replies by: BrianP, Maureen038

 Adopting Bodily Defenses to Cure Cancer

http://home.ccr.cancer.gov/connections/2014/Vol8_No1/intheclinic.asp

Steven Rosenberg, M.D., Ph.D., Chief of CCR’s Surgery Branch since 1974, is a genuine pioneer in the development of immunotherapies for cancer. In 1985, he was the first to demonstrate that an immunotherapy—specifically, the administration of interleukin-2 (IL-2)—could cure certain patients with metastatic disease. A few years later, he opened the doors to cell-based immunotherapies by showing that tumor-infiltrating T lymphocytes (TILs) could be isolated from melanomas, stimulated to proliferate, and reintroduced into patients to promote cancer regression. Since that time, Rosenberg and his colleagues have discovered and developed innovative ways to improve upon cell transfer therapies. He was the first to insert foreign genes into humans in 1990 and the first to demonstrate that genetic modification of T cells could mediate cancer regression in patients with melanoma, sarcomas, and lymphomas. Rosenberg has written more than 1,100 scientific articles, as well as eight books, and was the most cited clinician in the world in the field of oncology between 1981 and 1998.

^^^^^^^^^^^^^^^^^^^^^^^^^

Destroying the Competition

In 2002, we demonstrated that we could increase the therapeutic efficacy of ACT dramatically, by first extracting TILs, then depleting the patient’s remaining lymphocytes with a combination of drugs (cyclophosphamide and fludarabine) before reinfusing the expanded population of TILs into the patient. We recently reported that among the first 93 patients with metastatic melanoma who were treated in this way, 20 had complete regressions. Of those 20, 19 maintained their tumor-free status for more than six years and some have been followed for more than 10 years. We reported these data from three successive pilot trials; in the last trial, 40 percent of patients experienced complete cancer regression.

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 9
Last reply 3/11/2015 - 1:59pm
Replies by: arthurjedi007, Want2help, Anonymous, Patina

My friend aged about 62 was diagnosed withmetastatic malignant Melanoma in April 2014 . HPR showed malignant melanoma of left sole with invasion into reticular dermis,tumor thickness upto 3mm, no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 inguinal lymphode positive ECE.She underwent surgery on May 14.

 

The doctor opted for observation. Her scans were all clear till 25 Oct, 14. She complained of imbalance and right lower limb weakness. The MRI of brain showed multiple intraparenchymal lesion scattered in bilateral frontal,parietal,left occipital regions, largest measuring 2.5x2.3 cm in left frontoparietal region, She received palliative external beam radiotheraphy to whole brain to a dose of 30gy/10# from 27/10 to 6/11/14 PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes.  She has just completed her 6th chemotheraphy and now has weakness in right arm and right leg. She is facing a slight not very much) difficulty in understanding and responding. Looks like the brain mets are active again. She was doing good after her radiation and this happened suddenly.

We will see the doctor tomorrow. My question is how much raditaion can be given to a person? Her radiation got over on 6/11/14. What are the survival chances in case of brain mets? I love my friend and it dreads me what might happen next. I am just not able to function now

 

Can anyone please help.

God bless!

 

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