Stage 3B and waiting-help!!

Posted By
Anonymous
4/29/2014 1:55pm
Activity
Replies: 9

My husband was recently diagnosed with stage 3B-melanoma.. We noticed a pink cyst like lump at the base of his neck in November 2013. After much discussion-he had it removed only to find the answer that has changed our lives.  (no color melanoma measuring 1.5 x 1.1 x .8cm with a lesion depth of 9mm). We immediately had many doctor checks to see if we could find a primary site but to no avail. In December 2013, had the tumor successfully removed and a SNB. Lymph node was clear.  Results of PET scan were also clear.  In March 2014, we found another spot (melanoma) on the skin surface that was removed with clear margins.  We were told this may perhaps be an "in transit" spot.  At the present time, we are waiting on results of BRAF mutation test.

Where do we go from here?  We have been told that there are many clinical trials that we may quailfy for. As I have researched the trials-- I am finding out about T-VEC and also hearing the words Yervoy and Interferon.. Of course, the medication side effects seem horrible.. I am asking for advice on the drug treatments and also clinical trials.. HELP-- feeling overwhelmed and confused.  

I have been NED for almost 6 years after being diagnosed Stage IIIB. All I chose was surgery and have been thankful my bet has worked so far! However, there are better options now and this board can help guide you with experience. Personally, I did not choose interferon because the risks and side effects for me outweighed the small percentage that it would help. Others have made that choice and have been glad they did.  You will hear this over and over and it is true - FIND a melanoma specialist!  It may take extra effort to get to one but you will be glad you did. Weigh all your options and make the decisions with all the education you can taking into account your personal life and what you feel is best.

Good luck - this board can be a great support.

 

 

Jme - (4/29/2014 - 5:25pm)

thank you so much for your response!

My husband had a 19 mm (that's correct) tumor (the entire dimension were 22 X 20 mm) which was removed this February from his upper left back.  He told me he had a cyst removed and that he had melanoma on a Saturday night while watching a movie!  I was floored.  He is 48 and we have a 6 year old daughter.  We are lucky, we live in Houston so we are right by MD Anderson.  However, I've done tons of research based on hispathology and factors.  I know that they do have BRAF inhibitors that are targeted specifically for that type of mutation that causes the tumor to grow, if that is the type of mutation your husband has.  They have Zelboraf for that type and they also have Yervoy (ipi) for that. Yervoy can also be used in Immunotherapy which is tough but a game changer in the melanoma world.  It's essentially boosting your immune system (hence the side effects) instead of the traditional approach of trying to kill all the cancer cells.  It inhibits the tumor growth by inhibiting the pathway essentially.  My husband happens to have the NRAS mutation which they haven't developed anything really for it yet, even though it's on the same pathway as BRAF.

My husband had the WLE and then SLNB which came back negative and the scans came back negative.  They couldn't stage him because there was no overlying epidermal component to suggest it was a primary (hence it was either Stage 4 or Stage 2, BIG DIFFERENCE).  We are waiting and seeing and they can't tell if he has primary dermal melanoma due to the lack of skin involvement (it could have regressed since he had a weird mole there for years), but it does help my state of mind that we are right near melanoma specialists.  So maybe if you got melanoma specialist that would help with the anxiety.   Our clinical oncologist didn't think Interferon was worth it based on the research that shows it doesn't necessarily extend life, but it does extend the time until recurrence if that happens. We will do a vaccine trial if one opens up since there is very little risk at this point.

If you need any other research, feel free to say.  I'm actually a medical librarian but afraid to data dump as it can be pretty overwhelming.

Here at MD Anderson they have Immunotherapy which has shown really good results:

http://www.mdanderson.org/patient-and-cancer-information/cancer-informat...

I hope any of this helps but more importantly I know how hard the not knowing is.  It's hard to make these huge decisions without really knowing, many hugs.

 

 

 

 

 

Jackie <3

Also, the PD-1 drugs are being trialed  and you may want to ask your doctors about that, they were going to do combination trials in 2014.

 

http://www.pmlive.com/pharma_news/mercks_melanoma_drug_shows_survival_be...

Jackie <3

Jme - (4/29/2014 - 5:27pm)

thank you Jackie.. I will look at these websites and talk to my husband.. Scary stuff!

hbecker - (4/29/2014 - 9:43pm)

Hi - sorry to welcome you here, but you have come to a good place for information and support.

There are many similarities between your husband's case and my husband's - including a 9 mm melanoma that didn't show up on the skin. We consulted with Dr. Scharfman at Johns Hopkins, who specializes in melanoma of unknown primary. He helped us deal with the uncertainties of diagnosing and deciding on a course of treatment for these kinds of cases.

You don't say where you are located or whether you are able to travel, but I suggest you find a melanoma specialist with experience and knowledge of melanoma of unknown primary. Find someone you are comfortable with to help you navigate the next few months.

Wishing you well.

Hazel

 

blogging at www.hazelbecker.com

Jme - (4/30/2014 - 3:42pm)

Hazel,

Do you live in Maryland or did you research and find Dr. Scharfman? We have family in Baltimore so may be worth trying to get an appointment once we receive the BRAF results..

hbecker - (4/30/2014 - 8:51pm)

We had a referral to Dr. Scharfman from my husband's physician here in D.C. Luckily, Johns Hopkins has bought a couple of hospitals in Washington and suburban Maryland, and some of the follow-up care can be done at Sibley Hospital, about 4 miles from our house. The study Robert participated in was done in Baltimore, and our yearly follow-up study visits are there, but our oncologist visits with Dr. Lipson are here.

Backing up a little - William Scharfman is the researcher and clinical director of Hopkins' melanoma program who specializes in melanomas of unknown primary. He met with us a few times to help us figure out what was going on (as best he, or anyone else, can tell). We could go back to him for all the follow-up care if we wanted to, but the visits for the study were with Dr. Evan Lipson and we have great confidence in him.

Considering your description of your husband's case, I strongly suggest calling right away and getting an appointment with Dr. Scharfman to help you figure out what's going on.

Best of luck - feel free to email me off-list (through my profile) or through the contact page on my blog if you want.

Hazel

blogging at www.hazelbecker.com

Jme - (5/1/2014 - 7:09pm)

Hazel,

I have contacted Dr. Scharfman's office and will submit our records for his review. Once he has the records -we will schedule an appointment.  Thank you for the advice and referral.

Jenny