It's been a while... 19 y/o stage 4

syn · May 2014

I've had a lot going on lately, so I haven't been able to make it back to these boards in a while, but it's been on my mind and I wanted to update you all on my progress.

I don't remember what all I said before, I think the last I checked in was around the time I was having my breasts biopsied. So I'll do a quick recap.

I was first diagnosed in August 2013, after going to a few different emergency rooms complaining about severe stomach pains. Finally I was admitted and scheduled for surgery... They thought my gall bladder had burst. Gynocologist came in and said, whoaaa, hold your horses. I think she has cancer instead. So they do an exploratory surgery instead and biopsy a bunch of crap and come to find out, they say it's stage 3C ovarian cancer. They schedule me for chemo. I complain about a lump in my breast. I'm told that it's probably benign. They do a biopsy of my breast. It's the ovarian cancer. So now apparently that means I'm stage four.

Anyways, the chemo didn't work. Since my cancer isn't an aggressive kind, apparently it's a sort of double ended sword, because while it won't kill me as fast as aggressive forms, it's harder to treat because since the cells don't multiply so fast, it's sort of invisable to the chemo. At least that's how I understand it.

So now they have me on some experimental studies. My last CT Scan showed basically no difference in the abdominal tumors (some had stayed the same, some had grown, some had shrunk), however my CA125 decreased dramatically. There was also a lot of fluid built up around my lungs which makes it really hard for me to breathe. They scheduled me to get it all sucked off, which helped for a while, but now I'm back to wheezin' my way up the stairs, and I mean, I'm 19 years old for goodness sake. I shouldn't have to think about the possibility of bringing a wheelchair to Nashville Shores. Then again, I guess I shouldn't have to worry about any of this, but that's life, right?

Anyways, lately, besides the major breathing problems (I've quit smoking cigarettes, however I continue to smoke pot because it helps me more than all the rest of my prescriptions combined), I've been feeling really awful. I know that they're saying that the treatment I'm on seems to be working, but I still *feel* like I'm dying, if that makes any sense. I have no energy to go anywhere, I can't eat, and when I do eat it usually comes right back up, I have heartburn from hell, I feel so weak, all of the time. Besides my medications, do you guys have any ideas to help put some pep back into my step? I feel so... lethargic and lazy. Also, the weirdest thing is going on with my pubic hair, it's growing in really patchy if that makes any sense, but the hair on the rest of my body is behaving normally. Any idea what could be going on with that? There's also a gigantic rash on my side and on my breasts that I can't seem to do anything about, it's like a constantly open wound, it's painful and itchy and it seems like it's always oozing and gross. Not to mention that my stomach is so swollen that I literally look around 5-6 months pregnant, and now my lower back has been swelling up really badly too (I treat that with a heating pad and my dilaudid). I just want some semblence of normality... This has been going on so long, and I'm so tired of "fighting" it, I'm just, SO, *TIRED*.

Alexandra · May 2014

Dear Syn, of course I remember you

When you stopped posting after your breast biopsy, a thought crossed my mind that someone was making up stories. I am now ashamed of this thought, but at the time it was easier to reconcile than the knowledge of an 18-year-old girl with ovarian cancer and mets to the breast. It is just so bizzare and rare.

I am very sorry about what you're going through. I asssume you are diagnosed with low grade ovca and you're on one of he trials (Pimasertib? Trametinib? MEK162?).

It sounds like you have abdominal ascites in addition to pleural and getting it drained (paracentesis) will make you feel so much better.

In order not to irritate the lungs, instead of smoking pot, I would try edibles or hash oil if you can find it.

Did you have your thyroid checked? I can't honestly recommend this without knowing if your tumors are hormone-dependent, but personally I am taking estrogen (oral Premarin) and topical Testosteron (Testim 1%) and it helps with the level of energy and clarty of mind.

Syn, hang in there. It will get better.

Warm hugs,

Auntie Alexandra

ConnieSW · May 2014

Alexandra said:
Dear Syn, of course I remember you
When you stopped posting after your breast biopsy, a thought crossed my mind that someone was making up stories. I am now ashamed of this thought, but at the time it was easier to reconcile than the knowledge of an 18-year-old girl with ovarian cancer and mets to the breast. It is just so bizzare and rare.

I am very sorry about what you're going through. I asssume you are diagnosed with low grade ovca and you're on one of he trials (Pimasertib? Trametinib? MEK162?).

It sounds like you have abdominal ascites in addition to pleural and getting it drained (paracentesis) will make you feel so much better.

In order not to irritate the lungs, instead of smoking pot, I would try edibles or hash oil if you can find it.

Did you have your thyroid checked? I can't honestly recommend this without knowing if your tumors are hormone-dependent, but personally I am taking estrogen (oral Premarin) and topical Testosteron (Testim 1%) and it helps with the level of energy and clarty of mind.

Syn, hang in there. It will get better.

Warm hugs,

Auntie Alexandra

Syn

I, too, remember you and have wondered how you are doing. As I recall, you were having some issues with your doc. Do you feel you are being treated properly or have you found a medical team that is a better fit?

kimberly sue 63 · May 2014

Syn, you are so young to be

Syn, you are so young to be going through this. I hope you have a lot of significant people in your life to help you through this. Remember to take one day at a time. Try to focus on a positive thought each day. Hang in there. Kim

syn · May 2014

Alexandra said:
Dear Syn, of course I remember you
When you stopped posting after your breast biopsy, a thought crossed my mind that someone was making up stories. I am now ashamed of this thought, but at the time it was easier to reconcile than the knowledge of an 18-year-old girl with ovarian cancer and mets to the breast. It is just so bizzare and rare.

I am very sorry about what you're going through. I asssume you are diagnosed with low grade ovca and you're on one of he trials (Pimasertib? Trametinib? MEK162?).

It sounds like you have abdominal ascites in addition to pleural and getting it drained (paracentesis) will make you feel so much better.

In order not to irritate the lungs, instead of smoking pot, I would try edibles or hash oil if you can find it.

Did you have your thyroid checked? I can't honestly recommend this without knowing if your tumors are hormone-dependent, but personally I am taking estrogen (oral Premarin) and topical Testosteron (Testim 1%) and it helps with the level of energy and clarty of mind.

Syn, hang in there. It will get better.

Warm hugs,

Auntie Alexandra

Alexandria:

It is low grade, I forget what exactly they called it, and I can't remember the name of the trials, I'm on two of them, one of them I think they said didn't even have a name yet. If I recall correctly, one of the drugs they're giving me is supposed to go after the blood source for the tumors, kind of like strangling them? And the other drug is supposed to target the exact tumor, they did a bunch of tests on it and apparently they think they've figured out its exact source or something. It all goes way over my head, so I apologize if I'm not coming across clearly.

I was scheduled for a CT scan today, however I kind of slept 2-3 days straight, and finally got up today, and was too weak to make it to my appointment. I took some meds and felt better after a few hours, but I still missed my appointment. Hopefully I'll be able to reschedule it for sometime next week, and I'll feel good enough to go. But my doctor was concerned that the fluid in my lungs had built up to the point of needing to get drained again (last time they took over a gallon of fluid off), and she wanted to see what was going on with my chest pains, and I also threw up a lot of blood last weekend right around when the chest pains started, so I think she was going to be able to check all of that with the CT scan. Another thing, my feet and legs have been swelling up really badly, to the point that it makes it hard to walk sometimes, she gave me another water pill but I don't know what else to do about it. I don't eat any salt, ever. Any ideas on what I can do about these symptoms?

I haven't (to my knowledge) had my thyroid checked, and I don't remember hearing anything at all relating to anything being hormone dependant. And I also have no idea where to get edibles or oil.

syn · May 2014

ConnieSW said:
Syn
I, too, remember you and have wondered how you are doing. As I recall, you were having some issues with your doc. Do you feel you are being treated properly or have you found a medical team that is a better fit?

Connie:

I got transferred around a LOT, but I finally met with a Dr. Crispens at Vanderbilt, and she kind of reminded me of like a real-life House, and she found the place that offered this treatment that she said was a match for my cancer, and I see a Dr. Hamilton there, I think she's now my main doctor. I haven't seen Dr. Cripsens for a while. I really liked it here at first, but it's starting to seem like it's taking longer and longer with every doctor appointment, like they're caring less and less. I wonder if it's all in my head? I have been trying to contact Dr. Hamilton for the past week or so and finally got her on the phone to tell her about the chest pains and the throwing up blood, and she told me that she wanted me to go to the ER for a CT scan. I told her that I was already at the ER because my daughter had just broken her arm at the park (I cannot catch a break lately!), and that I couldn't admit myself because then we would have to be in seperate rooms and I wasn't leaving her, but that she could fax them an order for a CT scan and they could do it and fax her the results without admitting me. Well, she said that she would fax in the order, but she never did. And then the office closed, and I called her secretary's personal number that she had given me in case of emergencies, and she said that Dr. Hamilton had already left the office, and that there was no record of an order being faxed in. Sigh. I don't know how to feel, I feel like they've put me on the back burner, but what can I do? Nobody else offers the treatment that they're giving me. Maybe I should go back to Dr. Crispens and talk to her?

Rosamond M · May 2014

syn said:
Alexandria:
It is low grade, I forget what exactly they called it, and I can't remember the name of the trials, I'm on two of them, one of them I think they said didn't even have a name yet. If I recall correctly, one of the drugs they're giving me is supposed to go after the blood source for the tumors, kind of like strangling them? And the other drug is supposed to target the exact tumor, they did a bunch of tests on it and apparently they think they've figured out its exact source or something. It all goes way over my head, so I apologize if I'm not coming across clearly.

I was scheduled for a CT scan today, however I kind of slept 2-3 days straight, and finally got up today, and was too weak to make it to my appointment. I took some meds and felt better after a few hours, but I still missed my appointment. Hopefully I'll be able to reschedule it for sometime next week, and I'll feel good enough to go. But my doctor was concerned that the fluid in my lungs had built up to the point of needing to get drained again (last time they took over a gallon of fluid off), and she wanted to see what was going on with my chest pains, and I also threw up a lot of blood last weekend right around when the chest pains started, so I think she was going to be able to check all of that with the CT scan. Another thing, my feet and legs have been swelling up really badly, to the point that it makes it hard to walk sometimes, she gave me another water pill but I don't know what else to do about it. I don't eat any salt, ever. Any ideas on what I can do about these symptoms?

I haven't (to my knowledge) had my thyroid checked, and I don't remember hearing anything at all relating to anything being hormone dependant. And I also have no idea where to get edibles or oil.

Syn

I cannot offer any advice but would like you to know my heart goes out

to you. I agree with Kimberley and feel you are so young to have this problem.

It is very hard to be strong when you feel so weak. I hope it helps you to know

we are all sharing your concern and sending positive thoughts.

syn · May 2014

kimberly sue 63 said:
Syn, you are so young to be
Syn, you are so young to be going through this. I hope you have a lot of significant people in your life to help you through this. Remember to take one day at a time. Try to focus on a positive thought each day. Hang in there. Kim

Kim:

I agree, and I hate how unfair it is. It's so hard to stay positive because I feel like it's been going on for so long, and I feel like I'm not moving forwards or backwards, and I hate where I am. I had a great support system at first, but so much has happened in the last 6 months that I've lost pretty much all of it. My dad died, and my mom kind of lost it when that happened, and she stole my inheritance and started all this **** like she's in high school. She filed for divorce and she got this new boyfriend with a motorcycle when she's hated motorcycles all my life. She bought a new house and she said it was my fault my dad died and that I shouldn't call him my dad anyways and she's just been so hateful to me. And her boyfriend is a part of this community that I've been a part of for three years and it was basically my haven that had no influence from the outside world... until she came in and ruined everything. She told everyone that I had lied about my age (and I lied about my name at first too, but it was an anonymous community! I never did anything illegal!). She was trying to isolate me, and she achieved her goal because now none of them will talk to me. Oh! AND on top of losing my dad, my mom, and mom community, my mom also "lost" my dog! And she waited a MONTH to tell me that my dog had gone "missing"! So there's pretty much no hope in getting him back. So then I went to the only family that I had left, my aunt and my two cousins. My husband and I took my cousin emilie and her girlfriend to Panama City Beach for the weekend. We paid for EVERYTHING for them. They literally paid for nothing. And the night we came back to town, I spent the night with Emilie and her girlfriend and my other cousin and my aunt and her husband. That night, all of my pain pills went missing. I take dilauded 8 mg, which apparently goes for anywhere from $25-$40 a pill on the street. I had a full bottle when I went to bed and whoever took it left me 6. So there goes literally the rest of my friends and family, because now I can't trust any of them. Oh, I guess there's my husband. But honestly, every time I complain about anything to him, he says that I'm exaggerating or that it's no big deal. Or he'll just say that everything's going to be just fine and I need to stop being so dramatic. He's impossible to talk to, and not really any help. He just let me sleep for three days straight, and then tried to say that I didn't sleep that long, and that he "tried" to wake me up, but all he did was ask me if I needed anything and took me at my word when I said no. And just left me alone. I didn't get any medication for three days. I just got up to go to the bathroom. And when I did finally get up, it took me two hours just to get to my purse to get my pills because I was so weak from not having anything or moving for so long. And he never takes me to appointments unless I beg him. Even though his work was giving him Mondays and Fridays off. And he won't help me clean the house. He barely cleans up after himself. Oh and not to mention that he's CHEATING on me and lying to me about it and hiding it, and deleting emails and texts and then lying about that too even though I caught him red handed. Everyone keeps hurting me and then getting mad at me for it and expecting me to apologize, and I don't understand why! It's coming from every direction! And I don't know why I'm venting all this to you except I don't have anyone else to tell it to because they're all GONE! Everything that can go wrong has.. even stuff I'd never believe could happen. And I just don't know what to do anymore, I'm so depressed, I'm damn near suicidal. I've thought about it, the only reason I haven't is because I'm scared of going to hell lol isn't that funny! Ironic. Don't worry, I'm too afraid to actually do it. I can't believe I threw all this at you, I'm sorry, I'll stop.

kimberly sue 63 · May 2014

syn said:
Kim:
I agree, and I hate how unfair it is. It's so hard to stay positive because I feel like it's been going on for so long, and I feel like I'm not moving forwards or backwards, and I hate where I am. I had a great support system at first, but so much has happened in the last 6 months that I've lost pretty much all of it. My dad died, and my mom kind of lost it when that happened, and she stole my inheritance and started all this **** like she's in high school. She filed for divorce and she got this new boyfriend with a motorcycle when she's hated motorcycles all my life. She bought a new house and she said it was my fault my dad died and that I shouldn't call him my dad anyways and she's just been so hateful to me. And her boyfriend is a part of this community that I've been a part of for three years and it was basically my haven that had no influence from the outside world... until she came in and ruined everything. She told everyone that I had lied about my age (and I lied about my name at first too, but it was an anonymous community! I never did anything illegal!). She was trying to isolate me, and she achieved her goal because now none of them will talk to me. Oh! AND on top of losing my dad, my mom, and mom community, my mom also "lost" my dog! And she waited a MONTH to tell me that my dog had gone "missing"! So there's pretty much no hope in getting him back. So then I went to the only family that I had left, my aunt and my two cousins. My husband and I took my cousin emilie and her girlfriend to Panama City Beach for the weekend. We paid for EVERYTHING for them. They literally paid for nothing. And the night we came back to town, I spent the night with Emilie and her girlfriend and my other cousin and my aunt and her husband. That night, all of my pain pills went missing. I take dilauded 8 mg, which apparently goes for anywhere from $25-$40 a pill on the street. I had a full bottle when I went to bed and whoever took it left me 6. So there goes literally the rest of my friends and family, because now I can't trust any of them. Oh, I guess there's my husband. But honestly, every time I complain about anything to him, he says that I'm exaggerating or that it's no big deal. Or he'll just say that everything's going to be just fine and I need to stop being so dramatic. He's impossible to talk to, and not really any help. He just let me sleep for three days straight, and then tried to say that I didn't sleep that long, and that he "tried" to wake me up, but all he did was ask me if I needed anything and took me at my word when I said no. And just left me alone. I didn't get any medication for three days. I just got up to go to the bathroom. And when I did finally get up, it took me two hours just to get to my purse to get my pills because I was so weak from not having anything or moving for so long. And he never takes me to appointments unless I beg him. Even though his work was giving him Mondays and Fridays off. And he won't help me clean the house. He barely cleans up after himself. Oh and not to mention that he's CHEATING on me and lying to me about it and hiding it, and deleting emails and texts and then lying about that too even though I caught him red handed. Everyone keeps hurting me and then getting mad at me for it and expecting me to apologize, and I don't understand why! It's coming from every direction! And I don't know why I'm venting all this to you except I don't have anyone else to tell it to because they're all GONE! Everything that can go wrong has.. even stuff I'd never believe could happen. And I just don't know what to do anymore, I'm so depressed, I'm damn near suicidal. I've thought about it, the only reason I haven't is because I'm scared of going to hell lol isn't that funny! Ironic. Don't worry, I'm too afraid to actually do it. I can't believe I threw all this at you, I'm sorry, I'll stop.

Syn, I'm sorry you are

Syn, I'm sorry you are feeling so alone an isolated. You are right life is not fair. However, you do sound like you have a lot of fight left in you. You need to use that energy for your own healing. Think about all the people in your life. There has to be someone you trust. If not, see your physician and talk about your situation.There are many support groups, charities, religious organizations, ect that have mentors, counselors, or people who are good listeners. Keep coming to this board. It is ok to vent and let lose these stressors, it is a way of coping. Hang in there. Kim

syn · June 2014

kimberly sue 63 said:
Syn, I'm sorry you are
Syn, I'm sorry you are feeling so alone an isolated. You are right life is not fair. However, you do sound like you have a lot of fight left in you. You need to use that energy for your own healing. Think about all the people in your life. There has to be someone you trust. If not, see your physician and talk about your situation.There are many support groups, charities, religious organizations, ect that have mentors, counselors, or people who are good listeners. Keep coming to this board. It is ok to vent and let lose these stressors, it is a way of coping. Hang in there. Kim

Kimberly Sue:

Thanks so much. I think I've run into another gigantic problem.

So my husband and I were... erm... "Making up", and he bit the ever loving **** out of my neck, right over where the wire from my port is. It hurts something awful, and I can't turn my head around even halfway as much as usual. There's a bruise showing where I was bit, and it truly is *right* over that little wire, right around the end of it where it attaches to my veins. Now, I figure that if it was too big of a deal, the whole area would have filled up with blood - it is attached to a main artery after all, right?

Has anyone had a problem similar to this before? I'd call the doctor but my phone is out of commission and my new one shouldn't get here until Thursday, and my husband doesn't come back from the feild until sometime Wednesday-Thursday. Sigh. I've tried my pain pills, they don't touch the pain in my neck. I'm about to try putting an ice pack on it. Any ideas?

kimberly sue 63 · June 2014

syn said:
Kimberly Sue:
Thanks so much. I think I've run into another gigantic problem.

So my husband and I were... erm... "Making up", and he bit the ever loving **** out of my neck, right over where the wire from my port is. It hurts something awful, and I can't turn my head around even halfway as much as usual. There's a bruise showing where I was bit, and it truly is *right* over that little wire, right around the end of it where it attaches to my veins. Now, I figure that if it was too big of a deal, the whole area would have filled up with blood - it is attached to a main artery after all, right?

Has anyone had a problem similar to this before? I'd call the doctor but my phone is out of commission and my new one shouldn't get here until Thursday, and my husband doesn't come back from the feild until sometime Wednesday-Thursday. Sigh. I've tried my pain pills, they don't touch the pain in my neck. I'm about to try putting an ice pack on it. Any ideas?

You need to have it

You need to have it evaluated. If it is bruised and incresing in pain, it could be a collection of blood under the skin. Seek help. Kim

It's been a while... 19 y/o stage 4

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