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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mel123's picture
Replies 2
Last reply 8/12/2013 - 10:33am
Replies by: mel123, Swanee

I don't post on here very often, but since today I am one year cancer free, I thought it might be encouraging to others who are newly diagnosed. One year ago today, I had surgery to remove the lymph nodes under my left arm (this was about one year after I'd had my original excision and lymph node biopsy which came back all clear at the time). Everything was so uncertain, words like immunotherapy, adjuvant therapy, radiation, interferon, clinical trial were all being thrown around and I didn't like any of it! 

Cut to one year later, I'm in a clinical trial, being the guinea pig that I didn't want to be, and doing very well! I won't go in to the entire story here, but there's info on my profile and on my blog which is below. The very first entry of my blog is the basic background to my little story.

I want you guys to know that I pray for all of you every day, wherever you are in your journey, whether a patient or caregiver, some of you by name even though I've never interacted with you. I am blessed and encouraged by the support I see on here on a daily basis. 

My best advice to you who are newly diagnosed is to be vigilant in your follow up care (I have plenty of complaints about my original dermatologist, but if she hadn't checked my lymph nodes at every follow up appointment, we might not have caught the cancer in the nodes as quickly) and if you have questions, ASK!! Other than that, dont' spend your life worrying about what "might" happen, and don't hide inside in a dark room, enjoy your life. Hats, sunscreen and UPF clothing were made for a reason!

Love, hugs, peace and prayers to you all :)


"For God has not given us a spirit of fear, but of power and of love and of a sound mind" 2 Timothy 1:7

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JenJen12's picture
Replies 3
Last reply 8/8/2013 - 11:06pm

Im jen and havent been on here in awhile but stopped by to share some good news.Just wanted to let everyone know that my 4 year NED date was yesterday! I defenitely celebrated. I've had some scares along the way but very happy with my current good health as I know it can change at any moment! Just started nursing school because my diagnosis at age 26 led me to an amazing career change!!! I'll be in a shape magazine article next month if anyone wants to check it out!
Stage 3a (few isolated cells found in sentinel node)
3 surgeries
Inguinal lymph nodes removed
1 month high dose interferon
11 months low dose injections

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JenJen12's picture
Replies 1
Last reply 8/8/2013 - 5:57pm
Replies by: LilithFaith

Im jen and havent been on here in awhile but stopped by to share some good news.Just wanted to let everyone know that my 4 year NED date was yesterday! I defenitely celebrated. I've had some scares along the way but very happy with my current good health as I know it can change at any moment! Just started nursing school because my diagnosis at age 26 led me to an amazing career change!!! I'll be in a shape magazine article next month if anyone wants to check it out!
Stage 3a (few isolated cells found in sentinel node)
3 surgeries
Inguinal lymph nodes removed
1 month high dose interferon
11 months low dose injections

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Hello again,


Thanks so much for knowing I can come here and ask questions of you all.  My husband is in 2 weeks on his radiation treatment for his melanoma and lung cancer.  He has 3.5 weeks to go.  I understand it is about a month or more before they will do a PETscan again to check the status of the melanoma.  Just wanted to get your knowledge of standard (if any) timing of a PETscan after treatment is done.

thanks, Mary

Hugs to all, patients and care givers.

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Replies by: benp

The results of Landsberg et al. have important clinical implications if the phenotypic plasticity of melanoma cells in an inflammatory microenvironment is validated in a larger cohort of patients with melanoma after ACT. Down-modulation of gp100 expression and concurrent up-regulation of NGFR expression of melanoma cells in an inflammatory environment raises the possibility of using ACT with a cocktail of CAR-engineered T cells with dual or multiple specificities to target more than one melanoma antigen to ensure complete regression of tumor lesions. For this, a personalized approach of analyzing melanoma antigen expression on tumor cells before and after ACT therapy will be essential for the selection of CAR-engineered T cells with defined tumor antigen specificity. The proposed approach may enhance the long term disease-free survival of patients with metastatic melanoma.


INTERESTING.  My question, "would aspirin improve the ACT/TIL success"? 

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

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melmar's picture
Replies 6
Last reply 8/14/2013 - 11:31pm
Replies by: BrianP, NYKaren, Anonymous, JerryfromFauq, POW

First thank you to everyone on this forum for sharing your experiences. Though I have not had time to post often, it has been a great source of support. Anyway since I last posted (and after initial brain surgery and gamma knife) I started pd1. I came off 10 mos ish later because of progression. Did three doses of yervoy but stopped because of liver toxicity. Took steroids for a couple of months and then had surgery to remove only remaining tumor in the adrenal gland. Unfortunately during surgery, the tumor ruptured and since then it has been a rough ride. Growths in abdominal cavity, liver, kidney, lungs and a small brain
met (which is under control after SRS) . After this progression, I started Zelboraf which worked wonders for two months, but it has now stopped working. Docs are considering adding MEK or maybe doing Il2 (there had been some push back on Il2 though because apparently it doesn't work well when things are growing rapidly). Anyway I am wondering if anyone on this board has been through a similar regimen and has any suggestions and/or knows of new promising trials. I have four kids age 5-12 and much to live for, but my optimism is fading. Please help if you can. Wishing much strength to everyone on this board. This is such an unfair roller coaster ride.

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

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Replies by: Annamae, nickmo79, Cindy VT, Anonymous, POW

Hello all, 

I had a level 1B melanoma 7 years ago and only basal cell removals since then... so very fortunate.  Recently, I've had some pain in my armpit.   Had a mamogram and there was no problem. I am on Keflex, thinking it may be an infection. Then, had some lab work done... Hemoglobin is 10.5, iron is normal and White Blood Cell count is 3.3     Family doctor is sending me to a hemotologist.   Could this be related to melanoma?  

Thanks, in advance, for any thoughts you may have to share.  


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Fred Morgan's picture
Replies 13
Last reply 8/13/2013 - 9:33pm

Hi everyone, new here need info. I have been taking 4 in AM and 4 in PM. Yesterday my head started itching real bad, arm pitts are red and I noticed today tounge is white. Do you think I should cut back on pills ?  Any ideas ! Please

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Research August 01, 2013



Public Availability of Results of Trials Assessing Cancer Drugs in the United States


J. Clin. Oncol. 2013 Jul 22;[EPub Ahead of Print], TA Nguyen, A Dechartres, S Belgherbi, P Ravaud




An analysis of cancer-related clinical trials assessing new drugs with a primary completion date between 2007 and 2010 reveals that almost 50% of trials still had no publicly available results 3 years after completion.


Purpose: To evaluate to what extent results of completed trials of cancer drugs conducted in the United States are publicly available at, as required by the Food and Drug Administration Amendments Act (FDAAA), or are published in journals.

Methods: We searched for cancer trials governed by the FDAAA: phase II to IV trials assessing drugs in the United States with a primary completion date between December 26, 2007, and May 31, 2010. For each trial, we also searched PubMed to identify the publication of results. We assessed the cumulative percentages of posted or published results over time by using the Kaplan-Meier method.ResultsWe identified 646 trials, including 209 randomized controlled trials (RCTs). At 12 months after completion of the trials, the cumulative percentages of trials with results posted at ClinicalTrials .gov, published in journals, and available either at or in journals were 9% (95% CI, 7% to 11%), 12% (95% CI, 10% to 15%), and 20% (95% CI, 17% to 23%), respectively, and for RCTs, the percentages were 12% (95% CI, 8% to 16%), 5% (95% CI, 2% to 8%), and 17% (95% CI, 12% to 22%), respectively. At 36 months, these percentages were 31% (95% CI, 28% to 35%), 35% (95% CI, 31% to 39%), and 55% (95% CI, 51% to 59%), respectively, and for RCTs, they were 38% (95% CI, 31% to 45%), 32% (95% CI, 25% to 39%), and 56% (95% CI, 48% to 62%), respectively. Public availability of phase III trials was 15% (95% CI, 7% to 23%) at 12 months, 39% (95% CI, 27% to 49%) at 24 months, and 64% (95% CI, 50% to 73%) at 36 months.

Conclusion: Despite the FDAAA, results for nearly half the trials of cancer drugs in the United States were not publicly available 3 years after completion of the trials.

Journal of Clinical Oncology
Public Availability of Results of Trials Assessing Cancer Drugs in the United States
J. Clin. Oncol. 2013 Jul 22;[EPub Ahead of Print], TA Nguyen, A Dechartres, S Belgherbi, P Ravaud

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Interview August 01, 2013



Immunotherapy in Melanoma




In this interview, Dr. Michael Postow, Assistant Attending Physician with the Melanoma–Sarcoma Oncology Service at Memorial Sloan-Kettering Cancer Center, and Dr. Tony Nimeh, Research Physician at Brigham and Women’s Hospital, discuss advances in immunotherapy for melanoma.

Dr. Postow is enthusiastic about the promising early data on the effects of blocking the programmed death-1 (PD-1) receptor using nivolumab and lambrolizumab, antibodies with specific activity against PD-1. However, he cautions that therapy using immunomodulators needs to be administered with care because of immune-mediated side effects and the occasional need for immunosuppressants. Large phase III studies will be necessary to determine the full potential benefits of these PD-1 immunomodulatory drugs. The ultimate hope is to win FDA approval for the drugs, making them accessible to the many patients in need.

Dr. Nimeh: Dr. Postow, would you discuss the recent data on nivolumab that were presented at ASCO?

Dr. Postow: Nivolumab is one of several very promising new antibodies that target the PD-1 receptor. Previous data on nivolumab had been published in 2012 in The New England Journal of Medicine1 This year at ASCO, long-term data from those studies were presented, and we learned more about PD-L1 as a potential biomarker for PD-1 therapy with nivolumab.

Dr. Mario Sznol presented long-term data on PD-1 treatment with nivolumab in the Melanoma/Skin Cancers Oral Abstract session.2 The drug toxicity profile was extremely favorable, even over time and with continued dosing. The lack of accumulation of additional toxicities over time is obviously very important with any ongoing, continuous therapy.

The median overall survival also appeared quite favorable, when compared with prior historical data in advanced melanoma. The median overall survival was 16.8 months across all of the different doses that were evaluated. Of course, cross-trial comparisons need to be interpreted with caution, particularly in a phase I trial such as this one; but, these results are certainly promising and, based on the results, several larger-scale, randomized, phase III studies are being conducted to test the drug’s benefits in a larger population.

Potential biomarkers for Nivolumab

Dr. Nimeh: Are there any immunotherapy biomarkers that might help identify the best candidates for nivolumab?

Dr. Postow: At this point, there are no specific biomarkers that have been studied thoroughly enough, and provided data that are convincing enough, to influence the selection of a patient for PD-1 antibody therapy. PD-L1, however, is being examined as a potential biomarker for nivolumab in ongoing large phase III trials.

To put this in context, we need to keep in mind certain principles in immunotherapy. Most anticancer therapies target the tumor itself. With biomarkers, we attempt to detect genetic changes in the tumor, or changes within oncogenic signaling pathways, to help us direct therapies at the tumors. In contrast, all of these immunomodulating antibodies (such as PD-1) act on, and target, the patient’s normal immune cells rather than the tumor itself. Because of that difference, it has been very difficult to identify a biomarker that would influence patient selection. In concept, every patient could potentially benefit from immunotherapy if it was used appropriately and in the right sequence or combination.

There is a lot of discussion about PD-L1 as a potential biomarker for nivolumab and perhaps other PD-L agents. In biomarker studies of PD-L1, patients are considered positive if they have at least 5% membranous staining on the tumor surface by immunohistochemical analysis. These patients preliminarily appear to have a greater likelihood of tumor shrinkage. However, some patients have an excellent response even though their tumors do not have PD-L1 expression. Therefore, patients who do not express PD-L1 should still be considered for treatment with agents such as nivolumab.

Nearly 50% of patients with melanoma have a BRAF mutation. Patients with BRAF mutations are expected to do just as well with nivolumab and other immunotherapies as patients without BRAF mutations. There are no convincing data to suggest that the response to immunotherapy depends on the particular mutation found in the tumor, especially with BRAF. Often, small-molecule targeted therapies, such as vemurafenib, dabrafenib, and trametinib, are approved by the FDA and used for patients with BRAF mutations. Combinations of these targeted agents are also being tested to see if they are better than single agents themselves. 

The specific sequences or combinations of therapies that are most beneficial are still being evaluated in clinical trials.  For a patient who has a mutation such as BRAF, we do not yet know, based on available data, whether it is preferable to start treatment with immunotherapy or with targeted therapy. It has been our practice, for an asymptomatic patient (who does not need an immediate response), to start with immunotherapy. This gives the patient an opportunity for long-term durable benefit. However, for the patient who has symptomatic disease or a large tumor burden, we prefer to begin with targeted therapy, as we feel this gives him or her the best chance for immediate tumor shrinkage (which seems to occur more readily with the targeted agents).

Dr. Nimeh: Blockade of the PD-1 and PD-L1 pathway may be effective against tumors in which PD-L1 is expressed at the cell surface, reflecting a baseline, “preactivated” state of the immune system. Is there anything we can do to up-regulate PD-L1 in cells that are not in such a preactivated state?

Dr. Postow: That’s an excellent question and one that is the focus of several ongoing investigations. It is not yet completely clear which specific treatment modalities would up-regulate PD-L1 because we have not yet done enough prospective trials, with pre- and post-treatment biopsies, to assess PD-L1 changes associated with a specific intervening therapy.

PD-L1 is believed to be up-regulated in the setting of chronic inflammation. This may be a mechanism by which the tumor cells create their own resistance to otherwise effective antitumor immunity. When tumor-infiltrating lymphocytes interact with the tumor, it has been shown (through interferon-gamma secretion) that PD-L1 can be expressed. Thus, perhaps the tumor has found a way to protect itself from these immunologic onslaughts of tumor-infiltrating lymphocytes. Perhaps we need to find ways to increase this immune-cell infiltration within the tumor to cause a PD-L1 up-regulation leading to an increased susceptibility to the beneficial effects of PD-1 therapy.

Bear in mind that we have not yet determined the appropriate sequence or combination to up-regulate PD-L1 clinically, after which we could use the PD-1 antibody to enact a response. It is a critical point that even patients whose tumors are PD-L1 negative can still respond to PD-1 blockade.

Side effects of immunotherapy

Dr. Nimeh: What are the side effects of immunotherapy to be aware of, and how do you manage them?

Dr. Postow: Immunotherapy enhances the body’s immune system, and our hope is that this results in improved antitumor immunity against the malignancy. Unfortunately, this activation of the immune system can also result in reactivity against tissues not involved in the malignancy, creating important side effects. And since patients often require immunosuppression for the treatment of immune-related side effects, the potential for the development of opportunistic infections is important to keep in mind.

Inflammatory pneumonitis is particularly relevant for antibodies that block the PD-1 axis. A few patients, unfortunately, died from complications of pneumonitis in one of the phase I trials. However, with increasing recognition and prompt treatment using immunosuppressants, we believe that this potential side effect can be effectively managed. The number of patients who experience pneumonitis is very low, particularly those in whom it occurs to any significant degree.

Renal insufficiency is another side effect—elevated creatinine levels have been associated with the PD-1 agents. Colitis and diarrhea seem to be more of a problem with CTLA-4 blockade than with PD-1 blocking agents.

The main point to remember, though, is that all of these agents can cause immune-related adverse events, which are generally easily managed with prompt recognition and the initiation of steroids or other immunosuppressants. Long-term sequelae are generally extremely mild, if they occur at all.

No maximum tolerated dose has been established in dose-escalation studies with PD-1 agents. These drugs are very well tolerated because the mechanism for adverse effects is different from that which occurs in chemotherapy or targeted therapy.   

Measuring response to immunotherapy

Dr. Nimeh: How is response to immunotherapy measured, and how is “success” defined?

Dr. Postow: Ultimately, we will assess the response to immunotherapy differently from the methods we have been using up to this point. Right now, however, response to immunotherapy is assessed using traditional radiographic response criteria, such as those applied to other investigational agents. Basically, these are the modified World Health Organization response criteria or the RECIST criteria.

Traditional response endpoints, apparent on CT scans or PET scans, can often be misleading and potentially underestimate the long-term survival benefits accrued with immunotherapies. The reason is that the patterns of response that occur with immunotherapy are different from those observed with traditional chemotherapy. For example, with immunotherapy, new lesions may appear in the presence of an otherwise decreasing tumor burden, and there may even be an apparent worsening of overall tumor burden, prior to ultimate shrinkage of the tumor burden and a response.

The immune-related response criteria have been investigated for patients treated with ipilimumab (an anti−CTLA-4 blocking antibody now approved by the FDA), and it was proposed that a novel set of response criteria should be applied to that drug. In fact, the novel immune-related response criteria appeared to better approximate the long-term survival benefits of the drug as compared with traditional radiographic response endpoints. The newly proposed response criteria still need to undergo prospective evaluation. Nevertheless, immunotherapies, particularly the PD-1 agents, demonstrate high response rates even with traditional radiographic response criteria, such as RECIST.

We are still struggling to establish the best surrogates to apply in early-phase trials and to ascertain how well these surrogates correlate with overall survival. Overall survival, therefore, remains the most important endpoint in clinical trials evaluating the immunologic agents. Interestingly, a greater number of patients have achieved long-term survival after treatment with ipilimumab than were considered to have responded by traditional radiographic response criteria.

Treatment regimens in immunotherapy

Dr. Nimeh: With new treatment approaches emerging, what is the potential for combining immunotherapies—for example, ipilimumab and granulocyte-macrophage colony-stimulating factor (GM-CSF)—or adding targeted therapy?

Dr. Postow: Many new agents appear to be promising as monotherapies. It is very exciting to think about the possibility of additive (or potentially synergistic) benefits if we combine more than one in appropriate and rational ways.

At ASCO this year, Dr. Stephen Hodi presented data which showed that patients who received ipilimumab 10 mg/kg in combination with GM-CSF had improved overall survival as compared with patients who received ipilimumab 10 mg/kg alone.3 The results were consistent with those from preclinical evaluations in mice. This combination treatment demonstrates the potential promise of combining these immunologic agents.

We reported in The New England Journal of Medicine,4 and also presented at ASCO this year,5 that, in a phase I trial involving a small number of patients, the combination of nivolumab with ipilimumab resulted in a very impressive response rate.

Whether or not these responses to combination nivolumab and ipilimumab (which have been durable) translate into long-term overall survival benefit is the subject of an ongoing phase III study. At this juncture, we do not yet know whether it is better to combine nivolumab and ipilimumab initially or to sequence them, one followed by the other. Patients can respond to nivolumab even if they have not responded to ipilimumab and vice-versa. We are hopeful that the large-scale phase III trials will answer these questions regarding the relative merits of combination therapy vs monotherapy. Combinations of targeted therapy and immunotherapy are also very exciting to investigate. Several prior evaluations6,7 have suggested that treatments such as BRAF inhibitors can result in immunologic effects that may be additive or synergistic when combined with immunotherapy.

We conducted a phase I trial in which we combined vemurafenib with ipilimumab.8 Unfortunately, the trial was discontinued because the rate of hepatotoxicity was too high. One of the many lessons we learned from that trial was the importance of carefully evaluating combinations of targeted therapy with immunotherapy in early-phase clinical trials, in which dosing and scheduling are very carefully monitored. It is possible that sequencing these agents, or using specific combinations, will be more tolerable and possibly beneficial.

One ongoing study is evaluating the use of dabrafenib and ipilimumab, with or without the MEK inhibitor trametinib.9 We are hopeful that this study will provide some additional information on the possibility of combining targeted agents with immunotherapy for patients with advanced melanoma. At this point, we would not recommend combining immunotherapy and targeted therapy outside of the context of a clinical trial. We encourage the enrollment of patients in such trials.

  • References
    1. Topalian SL, Hodi FS, Brahmer JR, et al. Safety, activity, and immune correlates of anti-PD-1 antibody in cancer. N Engl J Med. 2012;366(26):2443-2454.

    2. Sznol M, Kluger HM, Hodi FS, et al. Survival and long-term follow-up of safety and response in patients (pts) with advanced melanoma (MEL) in a phase I trial of nivolumab (anti-PD-1; BMS-936558; ONO-4538). Paper presented at: American Society of Clinical Oncology; May 31-June 4, 2013; Chicago, Illinois. J Clin Oncol. 2013(suppl; abstr CRA9006).

    3. Hodi SF, Lee SJ, McDermott DF, et al. Multicenter, randomized phase II trial of Gm-CSf (GM) and ipilimumab (Ipi) versus Ipi alone in metastatic melanoma: E1608. J Clin Oncol. 2013(suppl; abstr CRA9007).

    4. Wolchok JD, Kluger HM, Callahan MK, et al. Nivolumab plus ipilimumab in advanced melanoma. N Engl J Med. 2013;369(2):122-133.

    5. Wolchok JD, Kluger HM, Callahan MK, et al. Safety and clinical activity of nivolumab (anti-PD-1, BMS-936558, ONO-4538) in combination with ipilimumab in patients (pts) with advanced melanoma (MEL). Paper presented at: American Society of Clinical Oncology; May 31-June 4, 2013; Chicago, Illinois. J Clin Oncol. 2013(suppl; abstr 9012).

    6. Frederick DT, Piris A, Cogdill AP, et al. BRAF inhibition is associated with enhanced melanoma antigen expression and a more favorable tumor microenvironment in patients with metastatic melanoma. Clin Cancer Res. 2013;19(5):1225-1231.

    7. Comin-Anduix B, Chodon T, Sazegar H, et al. The oncogenic BRAF kinase inhibitor PLX4032/RG7204 does not affect the viability or function of human lymphocytes across a wide range of concentrations. Clin Cancer Res. 2010;16(24):6040-6048.

    8. Ribas A, Hodi SF, Callahan C, et al. Hepatotoxicity with Combination of Vemurafenib and Ipilimumab [correspondence].N Engl J Med 2013;368(14):1365-1366.

    9. Phase I study of the BRAF inhibitor dabrafenib +/− MEK inhibitor trametinib in combination with ipilimumab for V600E/K mutation positive metastatic or unresectable melanoma. NCT01767454. Accessed July 14, 2013.



Copyright © 2013 Elsevier. All rights reserved.


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brooke's picture
Replies 5
Last reply 8/8/2013 - 4:11pm
Replies by: POW, brooke, Becky

After all the wonderful responses and advice I received from everyone in my initial post, it seems that finding a melanoma specialist is key!

My husband is insured by Kaiser Permanente (an HMO in Colorado) and I know it can be very difficult to be accepted outside of their facilities.

I was wondering if anyone has had luck getting referred to the University of Colorado melanoma center or any other melanoma specialists with Kaiser insurance?



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presleerae's picture
Replies 11
Last reply 8/7/2013 - 1:33am

HI everyone.  I am new to this site and don't know if I'm in the right place.  My husband has just been diagnosed with a malignant melanoma.  I have the pathology report and would like to share it with you all to see if anyone can help me understand it better.  Is this where I post the details of the report?  I feel ignorant about it and I'm really scared and am having alot of anxiety problems because of it.  He is the love of my life and I will stand by him all the way.  Just needing answers. 

We go to a dermatologist on August 15 and to an oncologist on August 19.  


Please let me know where to post this report.  Thank you so much in advance, and I apologize if I'm in the wrong place.


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