arashkya's Journey with Skin Cancer - Melanoma

Survivor: Skin Cancer - Melanoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 9 years ago, Female, Age: 31, BRAF mutation positive: Don't Know, c-kit positive: Don't Know

  1. 1
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Discovered the problem

    Oh No

    While in college I discovered the problem area on my back. Through self-research I discovered the extremely high probability that it was skin cancer. And the bad kind.

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  2. 2
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Problem with doctor

    Oh No

    Being a poor college student away from all family, I had to rely on free clinics. It took months to finally get an appointment to see someone. Once there, I described the problem and showed them the trouble spot. The doctor instantly held up his hands and backed away. He refused to diagnose me and instead scheduled me for an appointment with a skin specialist two months later.

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  3. 3
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Decided to visit family

    Decision Point

    A few weeks after the first clinic visit I took a flight to my home state to visit family. They saw the problem and instantly got me in to see the family physician. I was diagnosed with multiple malignant melanoma within a few days. According to the doctors, I had less that a few weeks before it spread to the point of being untreatable. It would have hit the blood stream. The appointment for the skin specialist was a month away. I would have never made it.

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  4. 4
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    My first surgery was scheduled within a few weeks of diagnosis. The location was on my lower back and they had to determine the spread. There were MANY different CTs and MRIs to help determine the location of affected nodes, but the worst test came just before surgery. I can't remember what it was called, but I laid on a table while a needle was inserted into the problem area and something was injected in. The feeling was like having a burning cigarette put out into your skin over and over and over again. The pain was immeasurable. The surgery to me was like a blur. I simply woke up and it was done. I learnt that not only was my back done, but I had infected nodes all the way up to my armpit. There were two surgery points. Back surgery is not fun. I was unable to move very well for about 3 weeks. My family had to wash my hair, and it was difficult to wash myself. My parents invested in removable shower heads and shower chairs so that I could bathe myself. Dressing was harder still. I had to wear clothes that didn't involve bras, as my stitches were right where the band went. And the drainage equiptment had to be pinned to my clothes at all times. They never tell you how to clean those. Not really. So I'll share what I learned. 1. You have the tube, and the bulb thing (think hand grenade... it's fun that way) 2. Remove the bulb and squeeze out any fluid. If you find that there is coagulated blood... use lots of hot hot hot water. It will eventually come out. 3. The XXX tube. Obviously you can't remove it. This is what I learned. You pinch off the tube somewhere semi-close to the insertion point. Then using firm pressure, hold the tube between your thumb and forefinger and drag down. This will help force any gunk and fluid out of the tube. 4. You may choose to use a hot wash cloth instead of your fingers... which can help with loosening things. 5. Once all clear (as best as possible) hook the bulb back up and your done. I always did this once a day. Or once every two days. Whenever I needed to drain and record the fluid levels. My drainage stayed very clean and really impressed my nurses.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    Not long after recovering from the first surgery, I discovered a new pain in my groin area. Just around my pelvis. Thinking it was a bruise (since I'm highly accident prone) I tried to ignore it. The family did not. We went back to the oncologist and he didn't like it either. Looked like I'd be having another surgery.

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  6. 6
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Surgery to remove cancer that has spread

    Procedure or Surgery

    The second surgery was for a large cluster of lymph nodes that had become infected near the right side of my groin. The same side of my body as all the rest of the infection. The surgery went very well. I was even released the same day. New drainage tube and a new discovery of compression stalkings. Because of the location of the node removal, I now had a very high risk of lymphoma. Basically I now had a risk of having my leg swell to the point where I can't walk. Compression stalkings became a new familiarity. In the middle of summer. It was miserable. Thankfully, my surgeon said (nearing the end of recovery) that I may not need the stalkings. Just keep them on hand in case it seems like the leg acts up. Needless to say I do my best to keep my leg elevated whenever possible.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Neutral/NA
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  7. 7
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Work problems

    Oh No

    Due to my "vacation" now lasting two months, I was told by the doctors that I would not be returning to my home. Which was in San Francisco. I was told that I'd be quitting work and school. 1 year from my graduation date, I was forced to stop. You might be surprised to learn that student loans have no type of forgiveness for near death illnesses. My job promised me that I could return when I was finished with treatments. My position would be waiting for me. On top of all of this, I had to inform my roommates that I would not be returning, and my boyfriend (who I lived with as well). It was hard.

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  8. 8
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Interferon Injections

    Drug or Chemo Therapy

    I was lucky. I did not need to have any sort of chemo. On the other hand... I did have to do a years worth of interferon injections. And I'm terrified of needles. My mother was the one to help me. She injected me every other day for a year. And sat back and watched as I cried and screamed and cringed every time the needle came near me. The start of the treatments were the worst. I had massive side effects to the drug. My legs became so restless that I couldn't keep them still. I had to take a whole bag of benadryl into my system before the treatment just to help put me to sleep. Plus tylonal for the headaches. The first month was just bags. I was being fed the stuff through a pic-line in my arm. The pic-line? Worst pain. You have to be awake when they put it in. When mine was being put in they tried it first on my left arm. Since that's the arm I don't use as much. They messed up. The tube went in wrong and curled into a ball. After the excruciating pain of that, they pulled it out and said they had to do it all over again... but in the other arm. I'm sure my face was covered in tears. The second time was a success. But now I'd have to learn to not use my writing arm very much so as to not injure my veins with the tube. After the first month, I got to stay home and do the injections. My arm had become so weak from the tube that I couldn't even scramble eggs or open a bottle of water. I took advil and benadryl every time I took a needle. It helped with the indredible itching I felt in my legs. I also did it before bed, so that I could sleep it off. The treatments were hard, but not as hard as I'm sure it could have been. My body became very weak. My speach was slurred and off. And my body reaction time was destroyed. I could think something but it would be about 20 seconds before my body responded. Speach was the same way. And to add to that, my hair was falling out and my body was swollen. I couldn't eat. The medicine made everything taste and smell like cigarette ashes and metal, so I lost a lot of weight. In less than a year I went from 230lb to 180lb. But through it all... I never gave up. I did everything in my power to stay happy and positive. At one point during treatments I even flew out to San Francisco to help my boyfriend move into our new studio. I had helped find it over the phone. My roommate had kicked him out while I was gone and I wanted to stay with him. I had to keep a face mask on to help with the germs. And since it was during the big swine flu epidemic... I had a lot of snickers. People even spat at me in public and laughed. While visiting some places, people would point and take my photo. I don't think they ever knew why I was the way I was. They never asked. Nor would they approach me.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  9. 9
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Everything

    Side Effects

    The interferon came with a long list of possible side effects. Here is what I had: Constipation Weight loss hair loss swelling itching tiredness tenderness easy bruising lethargy not wanting to eat The one side effect that I fear I might have? Infertility The side effects remained in my system for nearly a year after treatment ended. And it was terrible.

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  10. 10
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Relationship issues

    Oh No

    Just a few months after finishing treatments, I was ready to move back home. It had been a little over a year since I left on "vacation" and I was ready to get back to my life. My life just wasn't there anymore. My boyfriend informed me that we were over. I discovered that he had been cheating on me since before I went to help us move into the studio. My roommate had kicked him out for cheating, and I never believed her. Instead, alienated a great friendship with someone who was like a sister. (I've never had a real sister, but she was the closest) I had no job, nowhere to live and most of my friends had already graduated school and moved on. I decided to stay living with my parents.

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  11. 11
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Brain Tumor

    Oh No

    After a year of being off of treatments my side effects wouldn't lessen. The doctors and nurses were confused and said that it wasn't normal. More tests were done, and we discovered that my thyroid had stopped. The treatments had destroyed it, and we never noticed. Due to the stopped thyroid my pituitary glad had gone into over drive, and the excess it was producing caused it to grow a mass. A pituitary tumor. I was instantly thrown onto thyroid medication to help. The mass was just a hairline away from interfering with my optical nerves. I would have lost my eye sight. Instead it's slowly shrinking down. I am now on stand-by to find out if I'll be needing any brain surgery to remove the tumor. Best news? All of the doctors believe that it's not malignant.

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  12. 12
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 4 years ago
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    Remission

    Celebration

    I'm not on my 4th year of remission. There has been no signs of recurrence. The doctor is extremely surprised with my recovery and is happy to tell me to go away when I see him. Not only that, since then I've met an amazing man. We have been together for a year and a half and just recently moved in together. He knows of all of my conditions and what I've been through and loves me with all of his heart. We plan to get married and start a family together. The best thing about it all? I never let it get to me. I never allowed myself to be depressed. Be sad. Be angry. I simply kept a smile on my face and kept going. Knowing that it would get better. And you know what? Despite all the pain... the hair loss... the side effects... I recovered. Weeks from no return, fully healthy again (all weight back.. boo) and living on my own with a man I love and with a job I enjoy... I recovered. And it was my positive attitude that kept my family from breaking down around me. They thank me for my strength every day.

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  13. 13
    • arashkya
    • Experience with Skin Cancer - Melanoma
    about 4 years ago
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    Update

    Other Care

    I've finally reached my 4 year remission mark. My oncologist has given me nothing but praise and is now only seeing me once every few years. My endocrinologist is now only seeing me once a year, and my neurosurgeon is only seeing me if necessary. My hair is fully grown in and is now just as thick as ever. (even a bit curlier) The pituitary tumor is a bit smaller than it started, but it hasn't gone away. If anything it never will, not w/out surgery. But so long as I'm healthy and doing well there is no need for that. So far everything is going amazingly well. My only hurdle now is that because I AM so healthy.... the state has cut my insurance. I'll have to try and get on the company insurance.... let's just hope that they can help cover the costs of the specialists when it's time.

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  14. 14
    • arashkya
    • Experience with Skin Cancer - Melanoma
    over 2 years ago
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    Remission

    Celebration

    This month has marked the official 5th year of my remission from my oncologist. It has been 5 years since I finished treatments. Since then, I've also gotten my thyroid conditions in check. This means that I'm come to terms with the fact that I now have a hypothyroid disorder that makes it near impossible for me to get the weight in check. Aside from that... I believe that I do pretty good. This month is also the start of a new chapter for me. I'm married! The amazing man that accepted me for all my flaws and troubled past has went so far as to marry me. (he's gotta be crazy) We've been together for nearly four years and can't wait to spend many many more together. Aside from the physical scars, there is virtually no sign that I suffered from malignant melanoma. My experiences though are invaluable. Thanks to what I know and experienced, I actually got the chance to save a dear friend from the same fate. He called me with concerns about a skin legion and described everything that had happened with me before diagnosis. I told him to run to his doctor immediately. They caught it before anything spread. He thanks me every day for yelling at him. (he was about to ignore it due to lack of money)

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