› Forums › Cutaneous Melanoma Community › New to MRF with my story
- This topic has 12 replies, 4 voices, and was last updated 10 years, 9 months ago by
luckydog.
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- August 15, 2013 at 1:39 am
It has been a long, stressful year since my original diagnosis in September 2012. If you recall, a mole began to grow and change on my left neck. After an inexperienced physician assistant at my local dermatologist told me it was a benign angioma and shaved it off, the pathology came back as invasive malignant melanoma (Breslow depth 1.5 mm at least, Clark level I, mitotic rate of 5 with no other “bad” characteristics). I immediately went to Memorial Sloan Kettering Cancer Center and saw Dr. Steven Wang and on 10/18/2012, I had a WLE and SNB performed by Dr.
It has been a long, stressful year since my original diagnosis in September 2012. If you recall, a mole began to grow and change on my left neck. After an inexperienced physician assistant at my local dermatologist told me it was a benign angioma and shaved it off, the pathology came back as invasive malignant melanoma (Breslow depth 1.5 mm at least, Clark level I, mitotic rate of 5 with no other “bad” characteristics). I immediately went to Memorial Sloan Kettering Cancer Center and saw Dr. Steven Wang and on 10/18/2012, I had a WLE and SNB performed by Dr. Jay Boyle at Sloan. Margins of WLE came back clear, final Breslow was 1.6 mm and a single Sentinel node removed, negative for melanoma. Entire body PET scan and head CT clear also. I was back to work a week after my surgery with no complications. The second punch came on 10/29/2012 when Superstorm Sandy devastated the Jersey Shore and I began working the restoration efforts 7 days a week, 12-16 hours days at my employer, a local utility company.
During a much-deserved trip with my family right after Christmas, I noticed a lump right under my left ear above the scar from the WLE. I saw the oncologic surgeon at Sloan on 1/6/2013 and he advised me that it was most likely nothing as I had told him I had a small infection at an ingrown hair in my scar. Nevertheless, he had an ultrasound done right then and it came back as a slightly enlarged lymph node but nothing alarming. He also performed a FNA, which came back benign. I went on, assured it was nothing. In April 2013, during a follow-up visit with the surgical oncologist, I told him the lump had not gone away and seemed to get larger. He became more concerned and sent me for a full-body PET scan, which unfortunately came back showing 2 areas around the lump as suspicious for malignancy. He then performed a very intense, painful FNA of the lump and scheduled me for a neck dissection and removal of my left parotid gland. The day before the surgery in May 2013, the nurse called and told me the FNA biopsy came back benign. I was still scheduled for surgery the next day however, they were first going to perform an excisional biopsy of the lump, do a frozen section and if nothing was found that was it for the time being. If they found anything, they would perform the original surgery. Unfortunately, I woke up after surgery with a drain and a scar from the top of my ear to the mid-line of my neck. 68 lymph nodes and surrounding tissue as well as my left parotid gland were removed.
The pathology came back 1 of 68 lymph nodes positive for melanoma plus 2 nodules of melanoma possibly infiltrating a nerve. The perineural invasion later proved to be false after further testing but the nodules were considered in-transit metastasis. This put me from a fairly “safe” stage 1B to a “serious” stage 3C in just 2 months considering when I first noticed the lump. The doctors were somewhat baffled about the “elusiveness” of the recurrence and that the melanoma showed up as “spindle” cells considering my original site was primarily epitheloid cells. In addition, the pathology of the surrounding tissue showed the possibility that I may also have chronic lymphocytic leukemia (CLL).
So after additional visits to a leukemia specialist at Sloan, the CLL was ruled out but a pre-cancerous condition was considered however additional testing failed to prove that so a big sigh of relief on that front.
I was referred to Dr. Sandra D’Angelo at Sloan’s Melanoma unit for consideration into a clinical trail. Two trials were offered, one for a Phase 2 trial of Dabrafenib as adjuvant treatment for Stage 3C melanoma patients with resected (removed) melanoma and the other for a Phase 1 trial of a dendritic cell vaccine against melanoma. Unfortunately, I proved to be BRAF negative so the Dabrafenib trial was out. I was very down about this but Dr. D’Angelo reassured me that Yervoy and the new PD-1 trials are better and more effective if I should have recurrence in the future and these are not BRAF dependent.
I was accepted into the dendritic cell vaccine trial and will have my stem cells collected on 9/11/2013 with my first of 5 vaccines to be given on 9/25/2013. I chose to do the trail because frankly I feel like a sitting duck and live in fear of this disease every day. I know that I will most likely have a recurrence but I want to give my self every chance to fight as I have a wife and 2 young children and I need to beat the beast. I use the term “Mela-No-More” and live and hope by the words of Dr. Wolchuk from Sloan as he presented at the recent ASCO conference: “We have thrown the books out the window on melanoma and melanoma is no longer a death sentence. It will become a chronic, manageable disease.” I prayer every day for this and all afflicted by any cancer.
So, I wait for my 6-month PET scan in late-September and hope the trial provides some benefit to me. My recent blood work all came back good with normal LDH levels and my full-body skin exam done today by Dr. Wang at Sloan was also good.
Please let me know if you have any suggestions for me going forward.
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- August 15, 2013 at 2:35 am
I don't have any suggestions for you, as my husband (the patient) is currently only Stage 1 with multiple primaries. However, I wanted to say that you seem to have this under control … as much as is possible. You are seeing a melanoma specialist, you are getting the very latest treatments, and you are being vigilant to stay ahead of this disease. You also came here, where you can find lots of information and tons of support.
I hope that all goes well with the vaccines. Please keep us updated.
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- August 15, 2013 at 2:35 am
I don't have any suggestions for you, as my husband (the patient) is currently only Stage 1 with multiple primaries. However, I wanted to say that you seem to have this under control … as much as is possible. You are seeing a melanoma specialist, you are getting the very latest treatments, and you are being vigilant to stay ahead of this disease. You also came here, where you can find lots of information and tons of support.
I hope that all goes well with the vaccines. Please keep us updated.
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- August 15, 2013 at 2:35 am
I don't have any suggestions for you, as my husband (the patient) is currently only Stage 1 with multiple primaries. However, I wanted to say that you seem to have this under control … as much as is possible. You are seeing a melanoma specialist, you are getting the very latest treatments, and you are being vigilant to stay ahead of this disease. You also came here, where you can find lots of information and tons of support.
I hope that all goes well with the vaccines. Please keep us updated.
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- August 15, 2013 at 6:44 am
I'm sorry I dont have any suggestions…but maybe you can get some fulfillment from helping me out lol.
I had stage 1 (maybe2…as it was a shave) on my right earlobe/base of cheek and ear in sept 2012.
went to MD Anderson…WLE and SNB from two sites side neck kind of cervical jugular and subclavical….all neg and margins clear.
skin checks and ultrasounds every 3 months since all clear.
6 weeks ago i felt hard lump about the size of a pea right under my ear…fixed and firm….now 6 weeks later about the size of a jumbo olive, fixed, firm about 1/2 inch from my primary site and right under my SNB scar below right ear
went for Ultrasound and FNA at UCLA today 14 Aug 2013
Radiologist tells me it looks like a mass on my parotid salvitary gland…he took samples and said results will be in in 3 to 5 days and i have appointmnmet with my onc (melanoma guy at UCLA on wed the 21 Aug.
this just sounds so similar I had to get your thoughts. etc.
Matt
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- August 15, 2013 at 6:44 am
I'm sorry I dont have any suggestions…but maybe you can get some fulfillment from helping me out lol.
I had stage 1 (maybe2…as it was a shave) on my right earlobe/base of cheek and ear in sept 2012.
went to MD Anderson…WLE and SNB from two sites side neck kind of cervical jugular and subclavical….all neg and margins clear.
skin checks and ultrasounds every 3 months since all clear.
6 weeks ago i felt hard lump about the size of a pea right under my ear…fixed and firm….now 6 weeks later about the size of a jumbo olive, fixed, firm about 1/2 inch from my primary site and right under my SNB scar below right ear
went for Ultrasound and FNA at UCLA today 14 Aug 2013
Radiologist tells me it looks like a mass on my parotid salvitary gland…he took samples and said results will be in in 3 to 5 days and i have appointmnmet with my onc (melanoma guy at UCLA on wed the 21 Aug.
this just sounds so similar I had to get your thoughts. etc.
Matt
-
- August 15, 2013 at 6:44 am
I'm sorry I dont have any suggestions…but maybe you can get some fulfillment from helping me out lol.
I had stage 1 (maybe2…as it was a shave) on my right earlobe/base of cheek and ear in sept 2012.
went to MD Anderson…WLE and SNB from two sites side neck kind of cervical jugular and subclavical….all neg and margins clear.
skin checks and ultrasounds every 3 months since all clear.
6 weeks ago i felt hard lump about the size of a pea right under my ear…fixed and firm….now 6 weeks later about the size of a jumbo olive, fixed, firm about 1/2 inch from my primary site and right under my SNB scar below right ear
went for Ultrasound and FNA at UCLA today 14 Aug 2013
Radiologist tells me it looks like a mass on my parotid salvitary gland…he took samples and said results will be in in 3 to 5 days and i have appointmnmet with my onc (melanoma guy at UCLA on wed the 21 Aug.
this just sounds so similar I had to get your thoughts. etc.
Matt
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- August 15, 2013 at 8:47 pm
There are lots of vaccine trials going on – my husband (Stage 2B) did the GVAX trial at Johns Hopkins, and we also looked at a peptide trial at Univ. of Va. but it was much more involved. The Hopkins trial just started its final study subject two weeks ago, and they hope to have some results to report after he finishes his four monthly injections and six-month follow-up early in 2014. There is some indication already that study subjects have had a heightened immune response.
It is so hard, being N.E.D. but with a high-risk case. I hope you can find some comfort in doing the vaccine trial, not just the frustrating "watch and wait" routine. And maybe, eventually, there will be a way to tell which melanoma survivors have micrometastases floating around … I wrote about that on my blog today.
I hope you are able to put melanoma into a channel in your brain where it won't be the first thing you think about every minute of every day. Enjoy your life, your wife and two young kids – live the fullest that you can – and stay vigilant. Cover up outside, watch your spots, and don't let any nagging lump or pain that doesn't go away escape without investigation.
I know this level of melanoma anxiety at Stage 3C is new to you. I hope things will get easier as you proceed through your trial.
Best of luck —
Hazel
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- August 15, 2013 at 8:47 pm
There are lots of vaccine trials going on – my husband (Stage 2B) did the GVAX trial at Johns Hopkins, and we also looked at a peptide trial at Univ. of Va. but it was much more involved. The Hopkins trial just started its final study subject two weeks ago, and they hope to have some results to report after he finishes his four monthly injections and six-month follow-up early in 2014. There is some indication already that study subjects have had a heightened immune response.
It is so hard, being N.E.D. but with a high-risk case. I hope you can find some comfort in doing the vaccine trial, not just the frustrating "watch and wait" routine. And maybe, eventually, there will be a way to tell which melanoma survivors have micrometastases floating around … I wrote about that on my blog today.
I hope you are able to put melanoma into a channel in your brain where it won't be the first thing you think about every minute of every day. Enjoy your life, your wife and two young kids – live the fullest that you can – and stay vigilant. Cover up outside, watch your spots, and don't let any nagging lump or pain that doesn't go away escape without investigation.
I know this level of melanoma anxiety at Stage 3C is new to you. I hope things will get easier as you proceed through your trial.
Best of luck —
Hazel
-
- August 15, 2013 at 8:47 pm
There are lots of vaccine trials going on – my husband (Stage 2B) did the GVAX trial at Johns Hopkins, and we also looked at a peptide trial at Univ. of Va. but it was much more involved. The Hopkins trial just started its final study subject two weeks ago, and they hope to have some results to report after he finishes his four monthly injections and six-month follow-up early in 2014. There is some indication already that study subjects have had a heightened immune response.
It is so hard, being N.E.D. but with a high-risk case. I hope you can find some comfort in doing the vaccine trial, not just the frustrating "watch and wait" routine. And maybe, eventually, there will be a way to tell which melanoma survivors have micrometastases floating around … I wrote about that on my blog today.
I hope you are able to put melanoma into a channel in your brain where it won't be the first thing you think about every minute of every day. Enjoy your life, your wife and two young kids – live the fullest that you can – and stay vigilant. Cover up outside, watch your spots, and don't let any nagging lump or pain that doesn't go away escape without investigation.
I know this level of melanoma anxiety at Stage 3C is new to you. I hope things will get easier as you proceed through your trial.
Best of luck —
Hazel
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- August 15, 2013 at 11:27 pm
This is my worry also. Diagnosed last October 2012 and had surgery and snb. Mine is on my middle upper back. I worry every day of my life that I am going to feel something somewhere…. I understand how you must feel and hope all goes forward well. So far I go to onc every 6 months and I live at my dermatologist office. No other melanoma but many other atypical things. Nine so far. Not so reassuring. I think the strides they are making in treatments are good and hopeful.
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- August 15, 2013 at 11:27 pm
This is my worry also. Diagnosed last October 2012 and had surgery and snb. Mine is on my middle upper back. I worry every day of my life that I am going to feel something somewhere…. I understand how you must feel and hope all goes forward well. So far I go to onc every 6 months and I live at my dermatologist office. No other melanoma but many other atypical things. Nine so far. Not so reassuring. I think the strides they are making in treatments are good and hopeful.
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- August 15, 2013 at 11:27 pm
This is my worry also. Diagnosed last October 2012 and had surgery and snb. Mine is on my middle upper back. I worry every day of my life that I am going to feel something somewhere…. I understand how you must feel and hope all goes forward well. So far I go to onc every 6 months and I live at my dermatologist office. No other melanoma but many other atypical things. Nine so far. Not so reassuring. I think the strides they are making in treatments are good and hopeful.
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Tagged: cutaneous melanoma
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