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
Replies 4
Last reply 3/15/2015 - 9:39pm
Replies by: Anonymous, jenny22

As a past user of this group (10 years stage 4 melanoma with Ipilimumab), I now need a good discussion group for prostate cancer in order to find the best urologist.

(I found my melanoma oncologist through this forum but cannot find such an active prostate cancer forum. There are few unfrequent users in the prostate cancer forum that I found. Can anyone recommend please)

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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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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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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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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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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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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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Brendan's picture
Replies 12
Last reply 3/16/2015 - 3:22pm

Hi everyone,

i just wanted to share some good news in the hopes that it will lift someone's spirits; as many have done for me in the past.

i just had all my scans yesterday and they looked good. Here's a quick summary:

Sept 2011-stage IV, lung met, thoracic surgery

Nov 2012-craniotomy #1

June 2013-craniotomy #2 (recurrence), gliadel wafers left in cavity

November 2013-two new mets, one in each lung

Jan 2014-begin nivolumab trial

Feb 2014-first scans on clinical trial are good, small met is gone, target met down 60%

March 2015-brain still clear, lung met stable after 95% shrinkage.

So I've been stage IV for 3 1/2 years and still going. Some SRS and ipi was mixed in there too, along with some seizures.  

I'm just happy to still be able to play with my girls and bother my wife!

Good luck to you all.

Brendan

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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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braunerk's picture
Replies 4
Last reply 3/14/2015 - 9:09pm

Has anyone had thier adrenals come back to life after failure from Yervoy. My endo says mine won't come back so I will be on steroids forever. 

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Replies by: Bubbles, JerryfromFauq

Vitals

Key clinical point: Patients with advanced melanoma and mutations in the NRAS gene had better responses to immunotherapy than did those without NRAS mutations.

Major finding: Of the patients with mutated NRAS, 28% had complete or partial responses to first-line immunotherapy, compared with 16% of patients without NRAS mutations.

Data source: The retrospective study evaluated medical records from 229 patients with advanced melanoma who were treated with ipilimumab, IL-2, or anti-PD-1/PD-L1.

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

http://www.oncologypractice.com/home/article/nras-mutations-predict-immu...

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

Patients with advanced melanoma who were treated with immunotherapy responded better if they harbored mutations in the NRAS gene, according to a study published March 3 in Cancer Immunology Research.

Out of 229 cases retrospectively analyzed, 26% had mutations in NRASG12/G13/Q61, 23% had BRAFV600, and 51% were wild type for NRAS and BRAF. Patients received first-line therapy with high-dose IL-2 (25%), ipilimumab (62%), or anti-PD-1/PD-L1 (12%), investigators reported (Cancer Immunol. Res. 2015 March 3).

 

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

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Anonymous's picture
Replies 8
Last reply 3/28/2015 - 2:07pm

My friend aged 62 years was diagnosed with metastatic malignant melanoma in April 2014. HPR showed malignant melanoma of sole with invasion of 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 ingunial lymphnode ECE. She underwent surgery in May 2014.

 

The doctor opted for observation. She was doing fine till Oct 14, when she complained of imbalance and right lower limb weakness.The MRI showed multiple intraparenchymal lesion scattered bilateral, frontal, parietal,left occipital region largest measuring 2.5x2.3 cm. She received external beam radiotheraphy to whole brain from 27/10/14 -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 was doing completely fine . She one day complained of pain in both knees and had difficulty walking. We had to support her even to go the restroom. Her 6th chemo was scheduled on March 2 . We went to the doctor and informed him about this. He delayed chemo for 1 day and gave her meds like mannitol etc. Then continued with her chemo and said the pain is not related to lesions in brain, She got discharged on March 7. She came back and was not able to get up herself due to weakness. Next day she was in a hazy sort of situation, taking time to understand. Her right leg and right arm had become very weak. We rushed her to emergency the next day. The doc ordered an MRI of the brain. The reports showed multiple intraparenchymal well defined nodular lesions scattered in frontal ,parietal,left occipital regions, largest measuring 3.1x2.8 cm in left frontoparietal region. Moderate perilesional edema is noted with effacement of frontal horn and mild midline shift of 3.5 mm towards right.

They asked us since it is last stage and the problem has reoccured, there is little hope. Now they would be doing stereotactic RT from 12/3/15  for 10 days but arnt hopeful if it would help. They say she has just 3-4 months to live. In the meantime her condition has improved slightly . She is able to get up on her own and there is less weakness in right arm and leg. Her all other reports are good.

Just 3-4 months to live when she has shown improvement..how is this possible? Is this illness so dreadful? Is there no chance of survival in case of brain mets? Looks like my world has come to an end after hearing this..can anyone please help? Is there any ray of hope.

Stay Blessed!

 

 

 

 

God bless you

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Aundrea's picture
Replies 11
Last reply 3/11/2015 - 1:11pm

Hi guys and gals, Im stopping by once again, second time in 2 years.  Last yr my husband had a wide excision for melanoma, reached clear margins, oncologist said all looked good and released him.  Just follow up with Derm and primary to check nodes.  Well low and behold I once again caught his melanoma, you would of thought the dr would have huh!  I noticed his node swollen and made a appt.  After numerous test, surgery 2 weeks ago for a modified radical neck desection of around 30 nodes and partial parotidectomy, 5 nodes were postive.  The oncologist said we reached clear margins, yay but what about last time.  It has taken me lots of reserch to finally understand cancer has misroscopic cells that cannot be seen by the naked eye or test.  All his test come back clear, MRI of brain, 3 ct scans, pet scan.... All clear except the nodes that have now been removed.  So the paln is 6-7 weeks of radiation and then the dr said he had 2 options.  Clinical trial MEK162 or Interferon.  Need opinions and advice.  He does road construction and we are in our 30s with 2 kids.  Spent our only savings on drs the last 3 months and to hear the dr say he probably will have a hard time working due to being sick from treatment kinda deppresed us both.  Have you done MEK162 trial?  What were side effects?  How was it administered and did you go home or stay in the hospitla the whole trial?  Does insurance cover a clinical trial or is it pd for my the trial?  What about radiation, what are the side effects?  I have read about Interferon but would love to hear others experiance as well.  Any advice on financial or disibility to help me provide for my family.  We just bought our first house 2 years ago and bought a new car 2 weeks before we found out about his cancer returning. This is all overwhelming.  Thanks for any advise!!  By the way, we are from Texas. 

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yazziemac's picture
Replies 2
Last reply 3/10/2015 - 12:18pm

Good morning

My husband, Pete, has his first infusion of Yervoy tomorrow for multiple mets in liver, spine, bone, muscle. His back has become quite stiff and sore from the tumours that are in the muscle and bone there.  We are going to talk with our oncologist tomorrow about radiation options, but I wanted to find out what others' experiences have been in this community.  What is the typical process of getting radiation for pain control at the same time as getting Yervoy?

Thanks in advance,

Yasmin

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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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