IAmA two time rare-cancer survivor. AMA!

Congrats on kicking the shit out of cancer. Was there anything specific you were able to do that helped keep your mind at ease while you went through this whole ordeal? Like a hobby or anything feasible like that?

Not really. The chemo I had was so draining so I would be on chemo for one full week and then off for two with the ovarian cancer. During chemo, I would just sleep. During my two weeks off, I would try to recoup for my next chemo. For my sarcoma's, I was just nauseous all the time and I wasn't aloud either in the sun or in places with large groups of people so it was pretty sucky.

How did it change your view on life?

Also, here's a video of a polar bear cub walking: https://www.youtube.com/watch?v=aGqedbRTz3U

If I could up vote you twice for the video, I would.

Also, it drastically changed my view on life. Afterwards, I enrolled in school and I really am trying to accomplish things. I appreciate things more, even just waking up next to my SO. Everything is better.

I'm a 22 year old 2 time common cancer survivor just here to say congratulations. Hang in there. Upvotes for cancer!

Wether it is a common cancer or a rare cancer, it is still just as amazing to beat! Good Job!

I actually have a totally different kind of question for you...

Did you ever feel like the world wasn't real anymore. As if, it wasn't possible something so horrible could happen to you? Like it was all fake or make believe somehow. I don't mean just simple denial. I mean literally questioning whether reality even existed anymore?

I like that question. I've never been asked anything like that before, and yes, I have. After my second diagnosis. It sucked because I found out about the sarcomas on my 1 year remission date for my ovarian cancer, and for a few days, I literally felt like it wasn't real. The ovarian cancer I knew happened, but I honestly thought the doctors just played some sick joke for my sarcomas.

My Girlfriend has late grade leukemia and has been told she doesn't have much longer, what is your advice for her to keep her hopes up and spirits high

What's your advice for me as a boyfriend?

As a boyfriend, just be with her. Sometimes, she might get tired and just want to sleep, or you might want to talk and she doesnt, but I know that having someone there, even just sitting with you helps. Don't tell her that its going to be okay and what not because I am sure she hears that from everyone else. Just be there, hold her hand. Buy her flowers. Watch movies. Do things that you normally would do, and just enjoy it.

For her, just take it one day at a time. It is so hard to focus on the now when you are so worried about the future, but it really does help. If she is in pain or needs help, go to the doctor. Don't push him out like many patients do. There isn't much that is going to ease her fear, but eventually she will accept it, if she hasn't already, and after that, she will be okay.

I am also a two time cancer survivor of malignant melanoma

Thats great! I don't know much about that type of cancer, but I have heard that its a tricky one to treat.

How do you feel about being labeled as a 'cancer survivor' the rest of your life?

Once someone knows that you have cancer, they treat you so differently, which sucks pretty bad. I am far enough in my remission though that my hair is about 3 inches long and I can cover my scars so no one really knows now unless I tell them. I am proud of myself for making it through chemo, but that label can be hard to deal with sometimes.

I've been in remission/"cured" (my oncologist's word, so yay) for over a decade. It becomes irrelevant. Friends and family sometimes (rarely) bring it up and sometimes I actually think, oh yeah, I did have cancer and I was on chemo. My main reminders are my fake hips and neuropathy in my feet, souvenirs of chemo, and those are just things you deal with because you made it through.

There is always little reminders. I'm not too far into remission so my hair is a constant reminder and my scars from my port.

On the 30th you'll watch doctor who reprise... how does it feel?

Well the Dalek are pretty pissed every-time he's on and saving the world and what not.

I can't wait.

If interested, you (and other relatives) can consider testing for Li Fraumeni syndrome. This may help guide screening in case you are at risk for others. Best of luck!

Thank you!

congrats on smashing OC!! Beat the odds with the Ewing's Sarcoma!! I had Ovarian Dysgerminoma too. My symptoms were 'my abdomen feels solid and not squishy'. The only indication on a blood test was my LDH levels in the liver function test were through the roof. A week after surgery, the levels halved and returned to normal levels in no time. high five for rare cancer beaters!

Congrats! I love to hear those good stories.

On the bright side, congratulations on surviving!

On the dark side, it sounds like you lost the genetic lottery. Have you considered genetic counseling? As a scientist I'd be interested to know what SNPs you're carrying, but as your friend I'd say that any results probably won't help you live your life any differently.

I have never actually though of it. I don't even know how I would get into something like that but I would be open to it.

As a two-time common-cancer survivor (Hodgkin's, melanoma), congratulations and high-fives all round!

What chemo did you do, with what different drugs over how long? Or was it radiation, or a combo? What were the short-term side effects? How about long-term?

I never got radiation. For my ovarian cancer I had (and these could be spelled wrong) etopiside, cystplatin, and bleomicin. The short term side effects were tiredness, like extreame tiredness, nauseua, lass of taste, weight loss, and other minor things. The long term side effect was scarring in my lungs from the bleomycin. It doesnt effect me much now since I'm not a runner or anything.

For the sarcoma's, I had doxerubicin, etopiside, adriomycin, and two others that I just can't remember off the top of my head. I haven't thought about them in a while. I only had one round of these because then I refused treatment. The short term side effects were the same as above plus low white blood cells. I haven't had any long term side effects yet.

For my ovarian cancer I had chemo for a week, then off for two, and I did that for three rounds and rejected my fourth round.

Did you have any health issues before the bout with ovarian cancer? I ask because i've been on anti-TNA drugs for 10 out of my 23 years now and one of the common side effects is many different types of cancer.

No. I had pancreatitis when I was in 5th grade but that was about it. I always seemed to have some kind of a cold though.

Well congrats to your good health! Oh and one more thing, did they make you take methotrexate?

That sounds really familiar. I will look on my papers but I think so. I know that I have heard that before.

It was either a pill or injection, and its used alongside chemo to suppress the part of your immune system that fights back against the chemo. They also use it for rheumatic patients like me so my body stops attacking itself. Its not a very happy drug

Okay yes I did have it.

Just wanted to say its nice to see another Euwings Sarcoma survivor... we actually have a really low survival rate. When I was in treatment for mine there were two other patients in the hospital with Euwings. I was the fortunate 1 of 3.

I hope you make it to your 5 year post date. Those monthly/yearly scans were always made me nervous. Best advice I could give you is keep a positive attitude, but you already seem like you are in a good place.

As for a question, did you have any extreme treatments? I'm just wondering because I both had the maximum allowed lifetime radiation treatment for a human, and a self stem-cell transplant when I had a recurrence (which was the worst).

(also did they make you take those little pink pills that would like instantly break apart the minute they hit your tongue? I forget what they were for... but they would make me throw up every time so I started crushing them and putting them in jell caps)

I had little green pills that were awful. Ugh the thought of them makes me cringe. I had chemo therapy but I only made it through one round before I refused any more treatment. Every side effect that you can get, I got. It was awful.

Ouch, I only had a few times where the Nausea would really get to me, but for the most part I was able to handle it.

I sincerely hope you never have to do it again, and wish you the best of luck in your recovery. And if you ever want to ask me anything feel free to send me a PM.

Thank you so much and I probably will. it is nice to have people to talk to that understand. I mean, I have family and friends, but they didn't go through it. They help, but its different.

Is it still rare if you got it twice?

I had two different cancers, so yeah.

first off .... im glad to hear your story with surviving cancer. What treatment besides cancer did you have if any, and where you given the choice to chose your treatment? Did you have a bowel resection and if so do you have an ostomy? How long have you been in remission? How often do you need to have check ups? Aside from family and friends, what health care providers were able to impact you emotionally, mentally, physically, etc in this process?

I only had chemotherapy for treatment. I didn't get any radiation. I also didn't get a choice in my treatment. They had to use very specific chemo's. I did not have any of my bowel taken out, thankfully. I have been in remission for two and a half years for my ovarian cancer and one and a half years for my sarcoma. I was lucky because try found my sarcoma so early from my ovarian check up. I go to the doctor every three months for a CT. I actually go to my doctor tomorrow which is both exciting and nerve racking.

did you have ovaries removed? and if not why?

And let us know how it goes!

I had my left ovary removed. I hope it goes well. I always get so nervous.

That is crazy! Congrats on surviving through so much in so little time though!...how long have you been in remission for?

My ovarian cancer about 2 and a half years and sarcomas about a year and a half.

What was the most comforting thing for you? I ask because my mom is getting tested for breast cancer next week and I want to be as helpful and comforting as possible.

Just having people around me helped. I hated talking about it, and when I did want to, I brought it up. It was comforting to know that people were with me, even just to stare at the white hospital walls. Good luck to your mom. I hope everything comes back clean. If she needs treatment, tell her to LISTEN TO HER DOCTOR. My grandmother passed away from breast cancer because she ignored her doctor and let her mass grow before having surgery. She was afraid. I am sure your mom is afraid. Just tell her you love and you are there no matter what the outcome of her test is.

Did you use cannibus at all during your treatment? I am always curious to hear people's results. Congrats on a clean bill of health either way!

I didnt because 1)It makes me tired and I was already so tired and 2) I live in PA and I am under 25 so they would prescribe it to me anyways. I didnt think about just going to buy some once to help me eat but I didnt. I do thik that everyone should; do that though if itll help them through it.

Do you still feel sick?

I don't feel sick anymore but I so have some side effects that I still deal with like hot flashes. My hormones are still all messed up from having an ovary removed which causes me womanly problems but I won't go into details with that. Other than that though, now. I feel healthy.

Do you think you're more likely to get another kind of cancer?

Medically speaking, I'm not sure. I do know that I constantly think that I am sick again.

Congratulations on your recovery! My brother was recently diagnosed with colon cancer. He's only 30 so they're having genetic testing done so they might identify a cause. They're specifically looking for lynch syndrome Did you have any genetic testing done? If so, what did they find?

Good luck to your brother. I hope everything turns out good and tell him to stay strong.

I have never done genetic testing before but I would be open to it. I never really thought about it much. Im not sure where I would even get into it though.

You are very lucky and I know how tough chemotherapy is and what you've been through. Sadly I knew too many who didn't make it. Always makes me happy to hear about people who beats cancer. What do you appreciate more today than before?

I appreciate my family more. I always thought they were just a bunch of crazy people, but now I can see that, although they are crazy, I love them dearly. I appreciate waking up, because for a long time, I thought I wouldn't. I know it sounds cheesy, but every morning I am just so happy that I get to experience that morning.

How did you feel when you actually found out that it was not a baby?

At first, the only thing I could think of was that I had cancer. When I finally did start to think about it, it was rough. I honestly wasn't ready for a baby, and my boyfriend, who is now my fiancé, wasn't either. In some ways it was a relief.

Two time cancer survivor here as well.

1980 and 1991.

It's a good feeling to know you beat it sure.

No question, just wanted to say God bless you. My mom died of cancer when I was 20 so anyone who fights it like you I think is very brave.

Thank you so much. I am sorry to hear about your mom. I know how tough that must have been.

Could you provide some proof please?

Yes. Sorry I forgot that. I will go in and do that now.

Do you like the new time vortex title sequence in this season of doctor who?

Yes I do.

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Sure, have at it.

Thats awesome and congrats! What did you find made it easier to deal with the cancer? If people pretended you didn't have it? Or if they talked about it with you? I guess mainly my question is, if I were to try to be there for someone with cancer, is there any activities/attitudes that help you stay optimistic? And if its not too invasive, was there ever a point where you "accepted" death so to speak, or did you always remain positive and confident that you would be fine?

Also, I've seen a lot of documentaries on the Gerson Therapy in the past few months (they're all over netflix if you have it) which is basically a diet that cures cancer. Although the way the docutmentaries put it, its just eating the foods you should. Your body is just repairing itself and returning to its natural homeostasis. The reason cancer crops up is because of the plethora of environmental contaminants we eat, drink, breathe, and absorb through our skin. And we just have to get them out of our body and replace the vitamins/minerals/enzymes we're missing. I don't know for myself if it works, but it can't hurt to mention it. It seems like it makes a lot more sense than chemo or radiation. Its essentially coffee enemas (yea I know) for detox and vegetarian diet/juice for nutrients. But if it does work, a much better option than conventional treatments.

Ps. Does anyone here know anyone that's used it and had successful results?

If you are trying I support someone with cancer, just act normally. Special attention I think made it worse. Also, I didn't want to talk about it much, and when I did, I brought it up in conversation so people just kind of learned to not ask about it unless I brought it up.

I did accept death. It was after my first round of chemo of my second diagnosis. I got every side effect that I could and I was so sick and I denied the rest of my treatment. I knew that I didn't want to die feeling sick and death would have been better than the side effects were. It honestly just felt like such a relief. It was as if a huge weight was lifted off my shoulders. I was still afraid, but it was a different kind of fear. It's hard to explain.

I tried every single diet and what not out there to avoid doing chemo and the only thing that really did save me, was the chemo. I think those other things helped with my side effects, but I don't think I would have made it without my chemo.

what's your favorite kind of muffin?

Coffee cake muffins. I eat them for breakfast.