Diagnosed Stage IV Metastatic June 2011 : Brain, Liver & Lung : Started Yervoy!

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9/18/2011 11:22pm
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Replies: 15

Hi everyone, this is my 1st time posting, just joined TODAY!

I'm from Pittsburgh, PA, thankfully home of the Hillman Cancer Center & UPMC Presby, where I've got all my surgeries, etc done already.

Back in May 2011, I had horrible headaches, and my vision was getting blurry, for almost a month I dealt with it (thinking it was my birth control doing it, so I got off that), and it didn't stop. So, June 21st 2011, I went for a head scan, and they found 2 SPOTS on my brain.

June 21, 2011, I was in the hospital and and June 22, I had brain surgery to remove the GIANT ORANGE size spot above my LEFT EYE (which caused the blurry vision), and they left the small spot on the other side of my brain in (size of a quarter).

I was out of the hospital after a few days and the eye doctor called and said that my vision tests showed hugely abnormal distress, and said I needed to come back in and after a few more tests, they sent me to the hospital, to either get eye surgery or a Lumbar drain (which is what I got for 8 days over July 4th), as all the fluid was still up around my brain causing stress on the eyes.

So for 2 months, for all of July & August, I had to keep checking with the eye doctor , and luckily my vision is almost back to normal as of Sept 2011 and in July I had the Gamma Knife treatment (which I just lost my hair in both spots they treated, and for almost 2 months it hasn't grown back!)

Then my chest xray showed I had 2 spots in my right lung (1.3cm & 3.9cm) and 1 spot in my liver (4.6cm), which for 2 months went untreated while my eyes and head were recovering.

FINALLY Sept 2nd, I started 1st injection of YERVOY / IPI . No side effects yet except for some very dry skin on my head. I go for my 2nd round Sept 23rd at Hillman Center in Pittsburgh. This is my 1st treatment for my chest spots, and all I can say is I HOPE THIS WORKS to shrink these down.

I will go thru whatever I need to to stay alive for as long as I can. I've had a very difficult time with this emotionally, I break down almost everyday crying thinking about the future, just having a hard time dealing with all this, most my friends must think skin cancer is a skin only thing and it's NOT, hell even I had no idea before I got this, I had moles removed this winter, where is where they think this may have came from.

I'm 31 years old and have 2 kids, who are 6 & 2, and I want to stay on this beautiful earth for as long as I can to be with my kids!

I'm just so nervous about whether this works or not, I am not looking forward to IL-2, if I have to go to that, I'm BRAF negative.

Welcome to this wonderful website, I know you will find answers and comfort and you will get to know so many insightful, wonderful and caring people, fighting this war with you....always remember, you are not alone and come here for comfort and answers.

I am always sad to hear of one more person who hears this devastating news.  But hear is the good news : ) , there is a  lot of hope for you and lots of treatments available and many people who find complete response in these treatments....however, it is a process finding out which one will work for you.  I have found it so helpful to read as much as I can, follow your gut and work with the treatments you are comfortable with.  It sounds like you are in a good place medically and so you should have good consultation for treatment. I wish I had a magic ball I could give you that would direct you to a perfect treatment that will work for you but unfortunately there is no such magic and like all of us, it is a challenging process to negotiate your way through....but like the rest of us......you will find your way and it will be unique unto you.

As you get to know many of the people (patients & caregivers) on this website you will soon discover that their are many possibilities and many different experiences. This cancer is so diverse and their are so many ways for it to rear it's ugly head in every part of the body and that is why I believe it is so difficult to treat.  Attitude is everything and that has been the hardest part for me....keeping my spirits high and not succombing to statistics (numbers!) and remembering how individual I am, so I must focus on the best possible outcome and I will be the 1, 5, 20 or  50% who survives or responds to the treatment or survival of this disease.

Surround yourself with loving, positive, caring and strong friends and family and don't worry about the ones you must leave behind, because today is about you and your battle to win!  You can do it.......it takes a lot but it's worth the fight, you go girl!  Pour your heart and soul into this battle and when you're feeling down, play with your kids, laugh and be silly and pour on the love to these little ones!  I have been living with this diagnosis for 18 months and I can tell you they have been the hardest but the most real and fulfilling of all my years.....I live in real time now, every moment counts. 

God Bless and I hope this helps you and you find inspiration from others on this wonderful website.  Take care and post often what your discoveries are! 

 "I had moles removed this winter, where is where they think this may have came from."

How could that be possible, maybe those moles were misdiagnosed?

In addition to misdiagnosis, could also be a unknown primary, positive SNB, deep melanoma etc.

They do mention "surgeries" as well.

When the poster feels able, perhaps fill out their profile.

Were the "moles' set to a pathologist?  If so get a copy of the pathologist's report.  They should have been sent.  If they were just removed for cosmetic reasons, they may well not have been sent.  WEre the mole stored in parafin blocks?  If so get them to a pathologist.

I'm me, not a statistic. Praying to not be one for years yet.

I'm so sorry you've had to join this club in the first place.  I know the emotional rollercoaster you are on as I'm on the same ride. I'm 41 with a 23 month old daughter who I can never imagine leaving behind. 

I pray and send you good thoughts that this Yervoy will shrink and eliminate the spots in your lungs.

Don't ever give up believing that you will be one of the lucky ones.

Lisa - Stage 4 - lung mets

Many impossible things have been accomplished for those who refuse to quit

I am totally with you. I am not so young (57), but I have a 17 year-old-daughter and I want to see her become a woman. It is definitely not easy to stay positive, so I pray every morning for gratitude for what I do have, and it has helped a lot. I spend as much time with my daughter as she will allow me, and we do just fun, silly things. I am glad for the folks on this board. Sometimes I just read posts, and sometimes I post, but I always get so much help and support no matter what. Hang in there and come here often!

Cristy, Stage IV

Getter done!

Thanks for the replies everyone. Before all this, all I really knew about cancer was like 1 in 4 people get it, never thought it'd be me, and certainly didn't even know skin cancer/melanoma was anything other than spots on the skin! It's just such a shock.  Like others have said, until you personally are affected, you just have no idea what we go thru.

I am going to call the skin doctor I went to see, to get my results from my various moles, two of them, I had to go back for a 2 hour surgery to remove them off my back, I remember them digging deep to get them out, they never once said any of them were cancerous, or even a step below, or I would have taken more precautions, got tests done.

Just sucks all of us have this horrible cancer than we don't see people living 40 years with or something, that's all I want, every dream I ever had, I just feel won't come true seeing my kids grow up and see what they turn into, career wise, getting married, etc.

Just yesterday I finally got my dad to tell me that it's very hard to see/hear me being so depressed about all this, when he's the one spending his free time to take me to all my appointments since day 1, and that it makes him feel like well why do we bother, if I can't even believe myself that I may actually get better and live 10+ years (like another Stage IV Melanoma patient we know), but being such an pessimist, I have a hard time believing anything is possible now that I have this, and that's what is so hard.

I do and will do every treatment, drug, etc they want to do, I just want to stay alive, but when I read about the few treatments we have I just get so discouraged.

I saw 2 of my grandparents both get cancer (colon cancer), and both survived for another 20+ years, and it just hurts me to know I got this shitty one that has to be so bad.

Sorry if I'm all depressed. I just don't know how after 3 months of this, I'm supposed to be all happy and living with this , when all I do is think about my kids.  I literally before all this happened used to sit and think "wow, this earth and living is just so awesome" and 2 weeks before my diagnosis, I was on vacation in California at Yosemite Park and thinking "wow I'm in one of the most gorgeous places on earth", then life gives me & all of us this crap!

Just like everyone here, we all want answers, this waiting & seeing what happens on every drug or treatment is such a nightmare.

I did finally today get some skin rash on my back from the Yervoy treatment, that's the 1st side effect that I've had/noticed so far from my 1st injection.  This week #2 injection!

I  don't mean to be harsh...I can totally relate with the feelings of depression. I had to ask myself a couple of questions when it was all said and done. If I could actually see myself dying in the near future (which of course, I can't), would I want to be miserable until then or spend my time making wonderful memories for my daughter? I chose the latter. Sometimes we just watch a Netflix Stand-up Comedy show so we can both laugh, and I have never been a comedy type of person until lately.

Also, just thank your father for helping you and know that his inability to help you without conditions is his issue and not yours. If it is adding to your depression, see if you can get someone from your local American Cancer Society office to help you get to appointments and so forth. They definitely offer lots of services.

And the last thing is, don't spend a whole lot of time dwelling on what could have been. The world is still beautiful - just go out and enjoy it (ha, ha, I know, easier said than done, but at least give it a try. You and your children deserve it!).

Cristy, Stage IV

Getter done!

I am currently seeing a Psychologist at the Hillman Cancer Center, basically once every 3 weeks, just to talk.  Saw them the 1st time a few weeks ago, and let all my fears, frustrations, anger, etc out on her. I see her again this Friday, and I think I'm more relaxed at this point, now that I've started treatment.

Going without any treatment for 2 months for my Lung & Liver, while my Brain healed, and I went thru a Lumbar Drain, and my eyes healing up, was very difficult.  All I wanted was to get started, and that sorta threw me off emotionally too.

We can't live in the past, but 2 weeks before my diagnosis, I went on a trip to California to visit a few friends, then to Las Vegas. I was suffering from my horrible headaches & blurry vision (I thought it'd get better at some point), and I had thrown up on the planes a few times and then one day I passed out for an entire day, and had to be taken to a Las Vegas hospital when my friend couldn't keep me away for more than a few seconds, where of course, they just gave me fluids, they didn't test me for anything else, which I guess is good, otherwise I may still be stuck out there.

Even at home here back in May 2011, I had went to my doctor complaining of headaches, I didn't have insurance at that time (my husband was starting a new job end of June which then I'd have it), so he just gave me some medicine to calm headaches, once again no tests to further find out if anything else was wrong.

It wasn't until I called my doctor again end of June and told the secretary that I was having blurry vision & headaches and she said I needed to go get a scan, otherwise I may die, and I guess she was right, because that day I did go and of course they found this damn cancer.

I am glad I found these Melanoma boards, I just hope all of us can keep making it thru, and they keep finding some other treatments, pills, etc to help us keep getting thru life!

 

 

Had an MRI of my brain today, for my various appointments this Friday.  Luckily the technician, said she didn't notice that many spots were holding the Contrast/Dye, so hopefully that means my leftover spots from original Brain Surgery & my other small spot they never treated except for Gamma Knife have shrunk.

Of course I will find out Friday when I see the Brain Surgeon (Dr. Engh) .

Also have my 2nd Yervoy injection Friday as well. 

Nervous as alwaysfrown

Praying that Friday is a FANTASTIC day for you!!

Getter done!

Met with my Melanoma doctor, and got my 2nd treatment of Yervoy.  Just hoping for no major side effects of course.

I did however get Shingles this week, just one spot on my back, they prescribed a medication that will hopefully get rid of it, I have been overly stressed.

I met with the Brain doctor as well. He said the Gamma Knife worked and my one small spot is shrinking, and the leftover spots from my original brain surgery are disappearing as well.  He did mention he saw a small speck on the scan, but can't tell if it is anything it's so small, so we'll just do another scan in 2 months to check up on that again. 

I'm just happy the Gamma Knife worked, so we can use that again if needed.

Now if we can get this Yervoy to work!

The Melanoma doctor did say that sometimes the Yervoy will shrink some spots and make others larger, and when they are treated again, they start to shrink, I just sure hope mine all shrink the first time.

Awesome, mom! That sounds really good. We are pretty much running parallel. While my brain scan just came back clear (which is pretty good considering I opted not to have the recommended WBRT after surgery), but I have about 15 lung mets and one large liver met. I start Yervoy on Tuesday, and I am glad to see that side effects can be light.

Have a great weekend~

Cristy, Stage IV

Getter done!

Weird thing too yesterday was our Melanoma doctor said I actually have 1 spot in my lung & 2 spots in my liver!  Before we were told like 3 times that it was 2 spots in the lung, 1 in the liver.  Now of course we look at the discharge papers from the hospital from back in June 2011 when I first got diagnosed Stage IV, of course, my dad kept this and I never saw it, so I had no idea til he found it yesterday and showed it to me.

I'm trying not to get ahead of myself with treatments, asking them what other treatments lay ahead, but I am still wondering if I can get surgery on my lung or liver (since it regrows) to help remove these spots if Yervoy or IL-2 or something won't shrink them.

I'm truly hoping Yervoy will shrink them, but I just want to know I have other options ahead if I need them.  I've read about others having surgery on these parts, but they like to wait to do those, but I think at some point they wont do it if they dont think it'll help someone.

Here's what they said in the discharge papers.

"There is a lobulated mass measuring 3.9 x 2.2cm in the medial segment of the right middle lobe which impresses upon the proximal medial segmental bronchus.  This mass may represent partially confluent nodules. A satellite nodule measuring 13mm module is identified adjacent to the fissure in the posterior aspect of the right middle lobe. No further nodules are identified in the right lung.  Left lung is unremarkable. "

"There is a 4.6mm hypodense mass in the segment 5 which most likely represents a metastasis. No definite further liver lesions are identified. The gallblader, spleen, adrenal glands, kidneys & pancreas are unremarkable. A midly enlarged portacaval lymph node measure 2.5 x 2 cm is present."

Then it also says later:

"3.9 x 2.2cm lobulated mass/partially confluent nodulesand an addional 13mm satellite nodule in the right middle lobe. In the absence of a convincing primary malignancy elsewhere, findings may represent a primary bronchial neoplasm".

Honestly I don't know what most of that stuff even means, I'm not sure if looking it up online is even going to help. I know many out there have tons more spots in their bodies, I don't know if that's worse, or the same whether you have 1 spot or 30 spots, I have no idea.

 

Most of it is definitely Greek to me! I am getting more confident by reading information on different treatments, but I can get overwhelmed pretty quickly.  My oncologist says that the lungs are huge and very forgiving. I have lots of mets in my lungs and I have not had one single symptom. Same with my liver. Ironically, I wont have symptoms until beginning treatment!! surprise  I feel very fortunate and grateful for any amount of time I can spend creating memories with my daughter. It's not always easy, but I just try to keep on pushing forward.

Have a great rest of your weekend!

Cristy, Stage IV

Getter done!