Worried!!!

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5/1/2014 11:05am
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Replies: 17

My husband had a 4mm melanoma removed from his back in Nov. 12 using the wide excision. They tried to use dye for the lymph nodes and it would not move so they done a whole body pet scan, with nothing showing up. He has went every 90 days to the surgeons office for exam and everything has been OK, last trip in Feb. said he is doing well and extended time to 6 mos. His liver enzyme test was high so they took him oiff of cholesterol meds and told him to quit naproxen as that would affect results. Last test it had gone down slightly. Lung x-rays have always bee clear, no swollen lymph glands etc.  Starting in Feb. his vision started having flashing lights etc. I have also posted on the ocular board. He has gone to a very good eye specialist who termed it as a suspicous choridial nexus and wants to watch he goes back in June. In the meantime he has had several new spots show up on his  back, chest, and inside his lip. We were sent to a different dermatologist as the one at our local VA felt he should be seen by a specialist. We went yesterday and boy he scared me to death!! He say the melanoma from his back has spread including his eye and kept making statements like no use to put him through eye treatment as it was the skin cancer. The eye specitalist whom is one of the best in the state said if it is melanoma in his eye it is not associated with the skin even though it is called melanoma, as it  looks totally different to him than the skin cancer type. This guy yesterday started in on brain scans, lung scans, chemo etc. He would only due biopsies on 3 of the 9 spots as he is positive they are all the same even though they do not look alike or even resemble the one taken off his back. and again no point in putting him through further biopsies.  He was hard to understand due to his accent and was very abrupt he also an associate professor at the local college and has a know it all attitude.

BrianP - (5/1/2014 - 11:50am)

Degood,

So sorry you are going through this.  I hope you are getting some good information on the ocular board.  Can I ask you where you are located and where you have been seen so far?  Are you able to travel to clinical trial sites if need? 

Look at this thread on MIF and look at the post by Johnathan on 28 June.  He's in a trial that seems to be working well for ocular melanoma.  It's a long shot but thought I would pass it on.

http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34242&hilit=adc

Brian

 

degood - (5/2/2014 - 9:36am)

Brian,

My husband is an former Marine and we have been going to the VA in Indianapolis. We live in North Central Indiana. A VA derm. found the spot on the back and sent us to a surgeon also with the VA.  He has not seen an oncologist as they said they got it all, by the results of the pet scan. He has been going back to the surgeon every 3 mos. for check up which consisted of lymph node exam, x-rays and blood tests. When he started with the eye problem the VA eye Dr. found the spot and sent him to an outside Dr. as the VA has no one that treats this problem. The specialist he was sent to if supposed to be the best in the state and actually treated my husband's mother for an eye melanoma years ago. He also said that it is not inherited.

When these new spots on his body showed up he went to the VA derm. she said given his history she wanted him to see someone else, the VA has so many derm. patients she knew she could not get him in to one of them so she refered us to this other Dr. The new guy was mad when we walked in because the VA limited him to what he could do and wanted us to leave the VA system and use medicare. Then started in on the other thing I mentioned before. We don't mind leaving the VA system but I don't think I would want him for a Dr. Thanks

BrianP - (5/2/2014 - 1:26pm)

Degood,

It's never easy navigating the medical system.  Sounds like you guys are doing a great job.  Never forget you are your best advocate.  Even with the doctors I love and respect I sometimes have to push for things I think are in my best interest.  I hope you are able to use some of the information from the others on this thread.  Tell your husband from one Marine to another, "Semper Fi!"

Brian

tcell - (5/1/2014 - 2:02pm)

Hi,

Honestly I do not think that being a doctor always means knowing what compassion is or maybe even applying it. One should assume that they are used to treating patients with terrible illnesses and to communicate accordingly but this is often not the case.

from your discriptiom it seems to me that the way he treated you and he communicated was far way from right and this was a very negative experience for you and xour husband. The way you write tells me you do not trust him really,

i cannot make any medical recommendations here but would advise you to see another melanoma specialist to get a second opinion before rushing into something. I thing it is very important to find somebody you trust.

BrianP - (5/1/2014 - 4:24pm)

Chris,

I was thinking the same thing but didn't know how to spell it out.  I think you summed it up nicely.

BrianP - (5/1/2014 - 4:24pm)

Chris,

I was thinking the same thing but didn't know how to spell it out.  I think you summed it up nicely.

degood - (5/2/2014 - 9:38am)

I agree with you and we are trying to figure out what to do. Thank you for your support.

Tamils - (5/1/2014 - 6:39pm)

I'm sorry you're dealing with this; it's very hard!  My father was diagnosed with ocular melanoma, also somewhat out of the blue.  He felt a lump on his head, and when it was removed, it turned out to be melanoma metastasized to the skull bone.  They could not initially find a primary, but after a few months, eye specialists decided it was probably due to a very tiny, flat spot in the back of his eye-- ocular melanoma.  I just wanted to shed some light on what your (cold, abrupt, rude) doctor may have meant by "no use to put him through eye treatment."  Our very kind ocular specialist explained the methods of directly attacking the melanoma in the eye, but she also said that since the melanoma had already spread, she advised we pursue a systemic treatment (designed to treat the whole body) rather than the specific eye treatment, which would be somewhat painful and hard to take, and would not address any other melanoma sites.  A systemic treatment, on the other hand, would have the possibility of also addressing the eye issue in addition to other areas.  However, my father's eye spot was not affecting his vision, and the doctor did say that in the event his vision were threatened, they would reconsider whether to go through with the eye treatment (implanting irradiated plaques).

I would strongly suggest getting a second opinion/ changing doctors.  I understand your guy is supposed to be the best in the state, but he sounds terrible nonetheless.  If you post where you are located, some people may be able to suggest alternatives.  Dr Sato at Jefferson in Philadelphia is supposed to be tops in the nation at ocular melanoma, and I hear he is also very caring.  My father saw doctors in San Francisco-- Dr Stewart at UCSF and Dr Phan (enormously kind and over-and-above helpful) at Kaiser SF.

Selumetinib was shown by clinical trial last year to have an effect on ocular melanoma.  Jonathan has also reported good results for OM from his clinical trial, linked to above.  Nothing else, to my limited knowledge, has specifically been shown to have efficacy in ocular melanoma-- but you should also very much keep in mind that OM is a small subsection of melanoma patients, and therefore drug companies do not usually run tests to scientifically prove efficacy in OM one way or another.

kylez - (5/1/2014 - 10:33pm)

Dr. Paul Stewart is with the Eye Center of Texas now (http://www.eyecenteroftexas.com/doctor/paul-stewart-m-d/). I knew he had left UCSF; I looked up where he went to just now.

 

degood - (5/2/2014 - 9:49am)

Thanks so much for your reply, I am sorry to hear about your father.  I may not have explained myself well enough, the Dr. I don't care for and confused me isn't the eye Dr. (who is very nice and explains things extremely well) it was a different dermatologist We were sent to him from the local VA because the derm. there wanted him to look at the new spots on his skin. Am I wrong thinking the dermatologist isn't the one to plan out treatment, and that we need to find an oncologist? Wish we lived closer to one of the specialists you mentioned. We live about 60 miles north of Indianapolis, in a very small town.

My daughter's best friend only 39. has melanoma started on her back and has spread they tried everything here, she is now going for clinical trials in Tennnesse, don't know if that is the closest place to us or not.

kylez - (5/2/2014 - 11:48am)

One place you might look for second opinions/specialists that might be near you is:

Indiana University Cancer Center
Interndisciplinary Melanoma Clinic

535 Barnhill Drive 
Indianapolis, IN 46202-5289 
317-944-0920
http://iucc.iu.edu
Theordore Logan, MD

Leslie Fecher, M.D.

- See more at: http://www.aimatmelanoma.org/en/aim-for-answers/path-to-getting-a-diagno...

Ginger8888 - (6/2/2014 - 10:32pm)

Hi, sorry to hear about all the problems your having with finding treatment..I was diagnosed in Jan 2014 with melanoma and sent to Dr Fecher M.D. at Indiana University ..I love her, she is straight forwar and is a specialist in melanoma..I did the 30 day interferon and was unsuccessful but she is getting ready to start me on Yervoy..Good luck

kylez - (5/2/2014 - 11:53am)

correct link to the IU melanoma clinic, http://iuhealth.org/simon-cancer-center/melanoma/

degood - (5/2/2014 - 12:19pm)

Thank you very much will look into this!! The derm. that seen him Wed. is at Ball Memorial hospital in Muncie, IN. They are owned by IU. This guy is an associate professor. We will seen if we can bypass him and go on to Indy. Thank you!!

Tamils - (5/2/2014 - 7:14pm)

Best of luck and let us know how things go!  Rereading your first post, it sounds like you are still trying to figure out whether the eye issue is melanoma, and if so, whether it is connected to the mel from his back and the new skin issues, so my post about OM was premature and hopefully will never be useful information for you.  It certainly seems worth consulting an oncologist rather than a dermatologist, especially if the derm is talking scans and chemo.   

degood - (5/6/2014 - 3:13pm)

Got results of biopsys today it is melanoma the derm said he would be going for surgery then chemo. Waiting to hear from VA derm as to course of action for the VA. Hoping they send him somewhere local, instead of having to drive 60 miles on way to Indy. Don't they do chemo everyday?

Anonymous - (6/4/2014 - 9:27am)

It appears that your husband has melanoma in at least 2 organs-- skin and eye. This means that he is Stage IV. It is very important for anyone who is Stage IV to be treated at a melanoma specialty clilnic, or at least have a consultation at a melanoma specialty clinic. If such a clinic is available to you in Indianapolis, you would be wise to take advantage of it. 

The thing with melanoma is that Stage IV was considered untreatable for decades. Melanoma is notoriously resistant to conventional radiation and chemo. It is only recently, like within the last 3 or 4 years, that scientists have begun to develop some treatments that actually do work to slow down or even stop the melanoma. New treatments in radiotherapy, immunotherpy and chemotherapy are completely changing the picture for melanoma patients. 

The problem is that these developments are coming so fast that few general oncologists can keep up with all the melanoma literature--not in addition to all the literature about lung cancer, colon cancer, breast cancer, and all the other cancers that they treat.  In addition, the most recent research indicates that the best way to treat melanoma is to combine 2 or more therapies. That could be surgery plus radiaiton, or radiation plus immunotheray, or a long list of combo treatments. Knowing which combination is likely to be most effective for a given patient requires a team of melnaoma specialists that you would only find in a melanoam specialty center. Lastly, all of these treatments have their own side effects which are different in different people. The doctors, nurses and support staff at melanoma specialty centers know what to look for and how to treat side effects before they do serious damage to the patient. 

My brother was treated at a VA. His local VA hospital was actually pretty good about most things. But I could tell that as soon as he was diagnoses as Stage IV most of his doctors threw up their hands and recommended "palliative treatment". They did not know and/or could not prescribe any of the new melanoma treatments currently avaiable (the VA does not participate in any clinical trials and the best new melanoma treatments are only offered via clinical trials at this point). 

I don't know much about how to navigate the VA system. I don't know if your husband can stay with the VA system but use Medicare for his cancer treatments. But, frankly, I would not recommend that anyone with melanoma stay exclusively wiht the VA healthcare system. They're just not set up for time sensitive, cutting edge treatments.