Like daugher like Mother

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4/7/2014 3:02pm
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Replies: 7

Hi all - I was diagnosed with Stage IV Melanoma in the lung unknown primary on 3/11/14.  I was mis-diagnosed in July 2012 with a carcinoid of the lung which was removed 10/31/12 via lobectomy and declared cured.  Several follow-up x-rays were clear until 1/27/14 when two nodules on my left lung were found measuring 13mm and 6mm, respectively.  Lung needle biopsy came back as melanoma.  The 2012 nodule was re-tested and came back as melanoma.  So.... I have been Stage IV Melanoma for almost 2 years with no treatment other than surgical.

I am meeting for the first time with a surgical oncologist this Wednesday (Dr. Jakowatz at UCI Medical).  I expect he will recommend surgical removal of the two newer nodes but I am not sure I want to do that.  Recovery from the last lobectomy was brutal and how much of my lungs can I have removed and still breathe?  Also, since it is malignant, won't more nodules just keep showing up?

Has anyone on this thread taken an Alternative approach to their disease with any success?  Drugs that stimulate the immune system scare me because I am currently deaf due to an over-active immune system. In other words, my immune system is very stupid and attacks healthy cells and ignores cancer cells.  Super-charging it, who knows what it would attack.

Just curious if anyone has pursued Alternative treatment.

Thanks,

Maggie

DZnDef - (4/7/2014 - 3:08pm)

Sorry, I should have explained the title of my post.  I sort of went off on a tangent.  Originally, I was going to tell you all that after my Melanoma diagnosis, everyone in my family is in the process of having their skin checked.  Yesterday, my Mom told me that they found a Stage II melanoma on her leg.  What are the odds we would both have melanoma at the exact same time while being 30 years apart in age (I'm 48)?  I'm guessing the death of my father in 2010 was the trigger for both of us.  They were married 52 years.  It was a brutal loss.  We'll see if any of my 3 siblings have melanoma.  They haven't been tested yet.  We all have mountains of moles.

SoCalDave - (4/8/2014 - 10:09am)

Hi DZnDef! In regards to your question about alternative treatments, the only changes I've made is to try and eat healthier, exercise more, etc. I do take reservatrol and turmeric extract. Like you I've got a ton of moles.

I've been seeing Dr. Jakowatz for about 4 years now (stage IIIb). Not everyone on this board likes him but there is no one else I'd rather have opening me up! It's different than a normal doctor's office; maybe because it's a teaching hospital. So there really isn't a front office so to speak. You check in where they take all doctors patients and then they call you back.

I'm sure he'll probably want to do surgery - he is a surgeon after all. I've seen him and his associate Dr Linden (Dermatoligist) and they've both been great.

I've gone through complete groin resection (original mel was on left calf), skin grafts, etc. My mel just keeps coming back at the original site. I did have micrometastasis on 2 of the lymph nodes, so I get pet/ct scans every 6 months. I've probably had over 30 re-currences. Right now is about the longest I've gone without a recurrence (6 months). We've tried all kinds of different topical creams and stuff but for now they just keep on cutting the ones that pop up.

Good luck tomorrow! I actually go see Dr J next week! Let me know how things go. If you need someone to chat with you can always pm me.

David

 

 

Anonymous - (4/8/2014 - 10:56am)

As for Dr.Jakowatz & UCI medical Center, I CANNOT recommend either.

Dr. Jakowatz did multiple surgeries on me & did NOT get CLEAR MARGINS on 3 of my surgeries which lead to my melanoma spreading to my organs. 

The BIG negative of going to UCI Medical surgery is that it is a "teaching" hospital so a "STUDENT/Resident" could be performing the surgery on you. Even though you think that Dr. Jakowatz is doing the surgery, it might be a student cutting into you. This is the way it is with teaching hospitals.

My recommendation is run, do not walk and find yourself a surgeon that will GUARANTEE to do the surgery not a student.There are plenty of EXCELLENT oncologist surgeon.

Try Hoag Hospital or Mission Hospital. I suggest you post asking for recommendations. Even if you have to drive to Los Angeles or San Diego, this is your life and you only get one chance to save it! I live with my decision to have Dr.Jakowatz do my surgery every day and regret it!

Good Luck

DZnDef - (4/8/2014 - 12:55pm)

Hi Anonymous, I posted asking for recommendations.  Do you have a particular doctor that you have used that you recommend?  You mentioned some hospitals but no doctors.

Thanks,

Maggie

DZnDef - (4/8/2014 - 12:53pm)

Hi David, thank you for the response.  I'm not sure what to realistically expect from my meeting tomorrow.  If he recommends surgery for my lung and I agree to it, I will have my thoracic surgion, Dr. Chino, do it, not Dr. Jakowatz.  I guess I'm hoping he has some ideas and/or resources to locate my primary.  Would be nice to get that one removed wherever it is to at least minimize the amount of cancer cells running through my system (for now anyway).  Plus, I think I need an oncologist keeping tabs on my whole body.  I love my thoracic surgeon, but he's all about the lungs only.  This whole journey started with a spot on my lung.  I'll let you know how it goes tomorrow.  Any advice on what to ask?

Thanks,

Maggie

SoCalDave - (4/8/2014 - 1:26pm)

I was first seen at both Saddleback Memorial and Mission hospital; they both recommended Dr Jakowatz.

I'd at least keep the appointment and see what he has to say. But it never hurts getting a 2nd and even 3rd opinion!

Let us know how things turn out. 

David

Anonymous - (4/8/2014 - 5:58pm)

Maggie,

 

Where do you live?? I have melanoma for many yrs. & have many melanoma oncologists.  I can recommend  a few melanoma oncologists: 1 at UCSD and 1 in Los Angels if you are interested?