newly diagnosed

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2/19/2011 9:18pm
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Replies: 13

Hi everyone , this is my first post on hereb and I really could use some info. Iwas diagnosed as stage 3 melanoma after having a wide excision surgery and lymph node mapping with 2 nodes removed and one come back posative for cancer . In jan o this year had rest of lymph nodes under arm removed amd all were negative. Went to see a chemo dr. and he wants to scan my brain and lungs and abdomen to see if the cancer has spread. that really scared me as my surgeon said I was stage 3 and would have to do a year of interferon and now this dr says something different . What do I believe or does any Dr. really know what this desease can do to person. any thoughts or prognoses info would be apprciated

LynnLuc - (2/19/2011 - 9:50pm)

at stage 3 you need to be aggressive...I am stage 4 and NED for now...the scans are part of a typical melanoma patients life...PET scans, CT's and MRI's for most of your life...Melanoma kills...there is no understating the fact you must be aggressive at stage 3...

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

glewis923 - (2/20/2011 - 8:36pm)

Amen to that!  If I could "go back" to stg. 3 b/c,  I would get bio-chemo, IL-2, IPI, and anything I could get my hands on.  Had too many Drs. minimize it and too "scared" they may "hurt me" by over-treatment / toxicity.  Demand the most aggressive treatment(s) possible.  Tell the Dr(s). you'll sign 1000 waivers of non-liability.  

Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

CLPrice31 - (2/19/2011 - 9:53pm)

Hi there. So sorry to hear that you were recently diagnosed. I was diagnosed with stage 3 in January also. Take the other doctors advice...I don't mean to scare you, but it is better to KNOW what you are dealing with. God forbid that it has spread, but if it has, you need to know so that you can make the best decisions for yourself.

 

I had both the PET CT and MRI directly after finding out the results of my lymph nodes. The people here on the forum are excellent help if you have questions (I'm too new to answer anything!)

 

Do your research, but know when to take a break. Rest. And like someone else told me, let people help you.

Hope to hear good news following your scans!

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy.
http://adventurewithmelanoma.blogspot.com

lhaley - (2/19/2011 - 10:13pm)

I'm sorry you've had to find us but welcome. 

Part of the initial staging is scans.  There is no other way to be sure that this disease has not spread.  Some of us post as NED.  That means No evidence of disease.  With melanoma you learn to be vigilent. 

Once the initial scans are done there is no strict protocal that is followed!  Some Doctors scan every 3 months for stage 3 patients, some every 6 months and some not at all unless there are symptoms.  What is right? Who knows....  there has been much discussion about this, however, all of us that have had initial metastisis have gone through at least once set of scans to see if there has been spread. 

Interfuron is the only stage 3 drug that has been FDA approved.  That being said some of the major melanoma centers no longer suggest it. This is something that you need to decide for yourself after talking to a specialist and hearing the pros and cons.  Some with lymph nodes that have had melanoma go with radiation to the area.  Again, this is something to talk to a melanoma specialist about.

I saw on your profile that you are from the Miami area.  Hopefully someone will give you the name of a melanoma specialist to consult if you aren't seeing one at the present time.  I do know that many on the board go to Moffitt in Orlando. 

It is extremly stressful at the beginning of your diagnosis as you learn all of the terms that are used, possible treatments and just coming to terms with what is going on. 

Wishing you the best,

Linda

Stage IV since 06

heg50heg - (2/20/2011 - 11:52am)

Linda, I am from OHIO and going to Miami Valley Hospital. Celina Ohio to be exact Thanks for telling me what NED meant and I am sure that some of the other Abreviations I wont know either, so I will be asking

TAC - (2/20/2011 - 9:37am)

I am Stage IIIb and have been so for 9 years...have had 6 recurrences all within 1 1/2 inches of my original lesion. Have tried interferon, radaition, a vaccine and now Leukine. Might consider Moffitt in Tampa...Dr. Jeffery Weber is a good guy to see there. You do need to be aggressive in treating it. The "watch and wait" is not a good idea even though some docs recommend it...'cause when sympttoms occur and you do go to ER or your doc, the melanoma has already spread into an organ...not good. Best wishes.

heg50heg - (2/20/2011 - 11:56am)

Thanks, that is my view to ,do everything I can right off the bat

Joan C - (2/20/2011 - 1:55pm)

Just wanted to reiterate that the OP is from Miami, OHIO, in case anyone knows of a good hospital near there.

Are you close enough to get to Cleveland and the Cleveland Clinic?  I would think they have a good melanoma program, but the folks here would know for sure.

Good luck and sorry you had to join our group

Vermont_Donna - (2/20/2011 - 3:19pm)

Hi,

You have come to the right place for support and information. This site also has valuable information besides what posting on the board here has to offer, for instance if you go to the main page of MPIP, to the upper left is information about melanoma including a glossary of terms. For me that was very helpful in the beginning, as cancer has its own language and learning the acronyms and other terms was important. Doctors will often use words that is second nature to them and so foreign to us. I didnt know what "resected" meant in terms of my cancer until I asked or read about it....it means having your melanoma removed in surgery, so you will hear about treatment after "resection".

What is important is to locate a melanoma oncologist that you like and that you feel comfortable with, at a major hospital prefably as you may need the services of other disciplines ie surgical ongology, certainly PET/CT scans; etc. I have had to use interventional radiology several times. For me going to a major medical center who had all the above services in addition to most of the treatments I needed, meant coordinated care and less running around. Yes I had to travel 90 miles one way to get there, but fortunately for me my family lives 10 miles from the hospital and my mother was an LPN who worked there at the hospital so she knew alot of staff there (not cancer staff though). You need to have a "team", that includes you, your doctor, a spouse or partner, a friend or other family member who can attend appointments with you and help ask questions and hear what the doctors are discussing with you; make a list of questions and ask them, making notes if you want to. Basically you need to establish a "medical cancer home" , rather like having a "medical home" with your primary care doctor where you live. Your oncologist should be sharing information with your pcp also, with your permission.

Your melanoma team  and you will ascertain what is the best course of treatment for you given your stage (once it is figured out). There is an FDA approved treatment for stage 3a (Interferon) as mentioned above. It has its pros and cons, as does everything. You may decide it is the right thing for you after discussing it with your team and family. There are clinical trials you can research, but keep in mind that trials can randomize you to a placebo or another drug that perhaps you wont know what you are getting. Clinical trials are different, and may be an option you decide to do.

This bulletin board on MPIP is useful with people posting their questions and concerns, and information about things they have done or tried. Some people are for conventional medicine and others try alternative options and others combine things. Remember that these posts are anecdotal, meaning they are peoples own personal posts and beliefs, some are founded in scientific research, others are not. Use common sense in thinking about what you have read and discuss things with your medical team and family. Use your best judgement with your team in deciding what is BEST for YOU, and then have NO REGRETS about treatment paths you take.

You will see that life will "settle" down in some ways once you get past the initial diagnosis and treatment decisions, meaning that of course your life is forever changed now with the diagnosis of cancer, but you will be able to enjoy things, and sleep again, and not spend every waking moment in panic mode. We have all been there and in time you will see that you can live with cancer. Melanoma is not an automatic death sentence, but it is CANCER and it is serious, just like breast cancer or pancreatic cancer, so be VIGILANT, check your skin, work with your team and keep coming back to this board to learn, get support and let us know how you are doing!

Vermont_Donna, stage 3a

stable after 4 infusions of Ipi (after many other treatments)

heg50heg - (2/20/2011 - 4:59pm)

what treatments have you gone through and how were you able to handle them. Can I still work doing interferon or radiation or other treatments or does a person hibernate for a year . Just wondering what to expect out of life for awhile. Thanks   HEG

Vermont_Donna - (2/20/2011 - 8:56pm)

Hi,

I've been dealing with melanoma for almost 5 years so its best to read my profile....diagnosed right off at 3a and still 3a, but have had many re-occurences in the same leg, usually on the average of 7 to 12 months after a treatment, but then more frequently this last year. So read my profile and if you have more questions please ask.

As far as Interferon, I decided after my SNB was positive and then the LND negative and I was offered to do the year of Interferon, I opted to take a year's leave of abscence from work and I applied for SSDI and was granted. My biggest side effects were fatigue from the interferon. I had some trouble concentrating ie couldnt sustain reading for long or watching tv. I slept alot. I had a teenager still at home so I was able to cook, clean, do laundry, basic "running the household" but it would have been hard for me to work (I am a therapist so felt I needed to be really mentally there for my clients). I had less income but I managed. I went almost a year before I had a re-occurence of melanoma. My re-occurences havent always looked like my first melanoma mole, so be vigilant about CHANGES that you see occuring on your skin, or lumps, etc, or maybe even more systemic things. Ask your oncologist about anything you are concerned about and some things you may find are not cancer and your pcp will be helpful.

I have done two rounds of radiation.....the first for 5.5 weeks and the second for 6 weeks, different areas of my leg (just about my whole leg has been radiated now)...I worked every day this last round, left early at the end of the day and had to drive an hour to get the treatments at a satellite clinic. I dont remember if I worked the first time. Radiation can make you a bit more tired but I cut back on other activities (less meeting my friends for beer and pizza in the evening,etc, instead I went home, cooked for my family and went to bed early).

Life will really depend on what you do for work, your family responsilbilities, financial matters, treatment options and issues, etc. I am happy with my choices so far and have NO regrets about how my melanoma cancer care has progressed over the last almost 5 years.

Vermont_Donna, stage 3a

heg50heg - (2/21/2011 - 12:30pm)

Thanks Donna, I will be posting the results of my scans when I find out today and maybe I might even come away with aplan of treatment. I will discuss with you and others for advice after appointment.

Drew N - (2/20/2011 - 10:32pm)

This is a scary time you're in, but this board is a good place to be. Get the best information you can and don't scrimp (or let your care unit scrimp) on your care. Good luck.

Drew N 3b NED