Stage IIIC at 18 years old

syn said:

Another question...

I still can't figure out if, now that I've lost my hair, I'm supposed to use a bit of shampoo when I shower or just use body wash. I've also noticed that my head seems really dry. Should I just use some lotion after the shower? The hygiene of a bald woman is somewhat foreign to me and I would appreciate any pointers!

 

Also, it seems that I've developed this weird thing that I could as closely as possible only describe as restless leg syndrome.  I constantly feel the need to stretch my legs. It seems that the discomfort is in the muscles, and it's seperate from the bone pain of that awful, awful, AWFUL neulasta shot. It mainly stays in my legs but occasionally spreads to the rest of my body. When I called my doc's office, the nurse said that the only thing she could figure was that it might have something to do with the steroids that I take the night before and morning of chemo. But that doesn't make sense to me. If that were the case, wouldn't I have gotten symptoms long ago, instead of almost three months into chemo and three weeks since I last took the steroids? Has anyone ever experienced it before? What did you do about it?

6 rounds of chemo before hysterectomy is very unusual. If I were you I would get a second opinion and make sure that your surgeon is an experienced gyno-oncologist.

Strange feeling in your legs could be caused by the beginning of peripheral neuropathy. Most chemo patients start getting tingling (pins and needles) sensation in their toes and fingers that later spreads in a sock and glove pattern. In my case it started after 3rd round of chemo.

Ovarian cancer does not spread to the breast. It is possible to have 2 primary cancers (ovarian and breast) concurrently or consequtively. It's especially likely if you tested positive for BRCA1 / 2. If you haven't been tested, I recommend that you do. At your age the risk is still very low. But don't jump to conclusions yet, wait for the results of the breast biopsy. Many lumps turn out benign.

I don't think it will make much of a difference if you wash your scalp with regular liquid bath soap. I used Clear Scalp and Hair Therapy Shampoo. You could try J&J baby shampoo, it has no scent and irritants. Chemo dries skin out everywhere, not just the scalp. Also if chemo has already shut down your ovaries (no period), lack of estrogen also causes dryness. I use Vaseline Intensive Care lotion for Dry and Sensitive skin, you can use another brand that you like. If you already experience vaginal dryness from premature menopause, get Replens. 

If you are not fatigued after chemo, physical activity is good for you. Walking, gym, swimming, yoga or whatever else you like to do. Don't lift anything heavy to avoid hernias.

I am very sorry that you have to worry about all those things at such a young age. You sound very mature and intelligent. I hope that soon you will put all of this behind you and live a long and healthy life.

Good luck to you Syn,

Alexandra

syn said:

Another question...

I still can't figure out if, now that I've lost my hair, I'm supposed to use a bit of shampoo when I shower or just use body wash. I've also noticed that my head seems really dry. Should I just use some lotion after the shower? The hygiene of a bald woman is somewhat foreign to me and I would appreciate any pointers!

 

Also, it seems that I've developed this weird thing that I could as closely as possible only describe as restless leg syndrome.  I constantly feel the need to stretch my legs. It seems that the discomfort is in the muscles, and it's seperate from the bone pain of that awful, awful, AWFUL neulasta shot. It mainly stays in my legs but occasionally spreads to the rest of my body. When I called my doc's office, the nurse said that the only thing she could figure was that it might have something to do with the steroids that I take the night before and morning of chemo. But that doesn't make sense to me. If that were the case, wouldn't I have gotten symptoms long ago, instead of almost three months into chemo and three weeks since I last took the steroids? Has anyone ever experienced it before? What did you do about it?

So sorry your going through this so young!  Its no fun at any age but 18 seems really unfair.  I was diagnosed at stage 3C over 6 years ago.  I was 41 which is statistically younger than average - but 18 - wow.  

Has anyone else in your immediate family had breast or ovarian cancer?  There could be a genetic link - same gene for breast and ovarian cancers. I really hope the lump in your breast turns out to be nothing.  My sister had breast cancer - 11 year survivor.  We both tested negative for the gene.  Go figure.  

On the bald head thing - I too had a dry scalp.  I tend to have dry skin anyway.  I did not use shampoo - just rinsed and or used shower gel I used on the rest of my body.  What I did use on my head which is awesome is aloe vera gel!  It is cooling, soothing and just really nice.  Give it a try.

I also have had restless leg syndrome. Mine seemed to be brought on by the benedryl I got with my chemo.  They gave me attivan to combat that when I was in the chemo chair all day.  

On the exercise thing - I too was in the gym 3-5 days a week and was in very good shape when I was diagnosed.  I know that helped me get through surgery etc.  but it is sort of depressing to see the negative changes happen in your body.  But physical activity is good for you!  You may not be able to do what you did for a while but keep moving and do what you feel like you can.  I maintained a bit of a workout schedule during chemo - but way scaled down.  Even if it was just a 15 minute walk in my neighborhood or a quick spin on the elliptical a couple of times a week.  Don't quit just becasue you can't do what you are used to doing.   

I don't think my doctor has really hidden things from me, however, I do know he doesn't share everything either.  That does bother me sometimes - but - I know it is best for me. Just becasue a certain something happened with one of his other patients doesn't mean it will or won't happen to me.  I feel like we don't need to waste precious energy on what MIGHT be - we need to focus on what is and what CAN be.  I hope that makes since.  But if you feel you doctor is not being up front with you talk to him about it.  You are very young and I am guessing your doctor has not dealt with many patients as young as you.   

Hang in there.  Again I am SO sorry you are facing this at such a young age.  But that will also give you an advantage in your fight.  

syn said:

Thank you!

Everyone for your feedback. First of all, I am seeing a gynocological oncologist who has been in the field for 30 years, and his partner has as well for the same amount of time. However, he did tell me that neither him nor his partner had ever worked with a patient as young as me, so I assume that this could be part of why he's hesitant about full disclosure.

My doctor advised me to wait until after my chemo was done and the next surgery completed before I took the genetic test. However, nobody in my family (though I'm unaware of my paternal health history) has ever been diagnosed with any kind of cancer except lung cancer, and the two diagnosed with that were both my great grandmother and grandfather on my mother's side after they were 70 years old, and had been smokers for about thirty years of their lives (but had both quit decades before the cancer hit).

Why is it uncommon to do 6 rounds of chemo (I'm taking taxol/carbo) before the hysterectomy? What is considered "usual" practice?

They told me that my CA125 was 598 - what does this mean? All I really know is that it's some sort of cancer marker, but that it can be affected by a lot of different things.

The exercise ideas are great... The gym I go to has a pool and that sounds like an awesome idea. The only thing is that I'm very shy about going anywhere in public without a wig on, and obviously I wouldn't be able to wear it into the pool. With the scars I can cover up with a one piece bathing suit, but the hair is something that has completely distroyed my self esteem... Though I seem to get more compliments on my wigs than I ever did before the cancer, and it takes a lot less time to get ready. Fancy that! I suppose there's an upside to everything. My doctor put me on some anti depressants, but he also described it as the "starter dosage". It didn't seem to affect me at all. Anyone have any tips on the depression/low self esteem?

I'm sure a lot of this sounds like silly teeneybopper vanity to most of you and I apologize.

Standard treatment in North America for advanced ovarian cancer is surgery (total hysterectomy, bilateral salpingo-oophorectomy, optionally omentectomy, appendectomy, other "-ectomies" with cancer debulking) followed by 6-8 rounds of Taxol + Carboplatin. If disease is so large and widespread that surgery is not possible after diagnosis, standard treatment is 3-4 rounds of neoadjuvant chemo followed by surgery followed by 3-4 more rounds of IV (intra-venous) or IP (intra-peritoneal) adjuvant chemo. I had 4 chemo rounds, then surgery, then 3 more chemo rounds. I have never heard before of 6 rounds of neoadjuvant chemo, but maybe it has to do with your age or your location (you sound a tad British), I really don't know.

CA125 is a protein tumor marker or biomarker found in greater concentration in ovarian cancer tumor cells. The absolute value 598 is irrelevant, what matters is the trend: as long as CA125 decreases with chemo - chemo is working. If CA125 decreases by more than 50% with each round of chemo - chemo is working well. Normal range is 0 - 35. Once you get into this range - you will be declared NED (no evidence of disease = remission). For some ovca patients CA125 is not a good marker and they are tracked with CT scans or simply based on their symptoms.

There is no rush to get genetic testing. But just so you know: there is an equal chance that mutation was passed on by mother or by father. My mother is a breast cancer survivor but she is BRCA negative. I am BRCA1 positive, which means that mutation came from my father and I also have no knowledge of his family history. My daughter had a 50% chance of inheriting BRCA1 mutation from me, but she is BRCA negative after her father.

For swimming I can suggest a rubber or silicone swimming cap and waterproof mascara. When my hair fell out from chemo I bought an insane number of wigs and enjoyed wearing them. I didn't have too many self-esteem issues as long as I had my make-up, fake eyelashes and eyebrows and didn't look like a pale zombie in the mirror. "Fake it till you make it". I would not call it vanity, at any age woman's looks is a large part of her self-image. There is a charity program called "Look Good Feel Better" for female cancer patients, where they teach you to use wigs, scarves, skin care products and cosmetics, and send you home with a big bag of goodies. Check out their website http://lookgoodfeelbetter.org/

You don't have to apologize to anyone for expressing your feeling; cancer could cause depression, fear and anxiety in anyone. Personally I am not a fan of antidepressants (they put you in a fog and tank your libido), but to each their own and many women successfully take them. I think you're holding it together really well all things considered. Maybe it will help you to join a young cancer survivors' support group in your area, to talk to the psychologist or to another adult you trust or to keep a journal / blog. Maintain your identity, don't get sucked into non-stop googling ovarian cancer statistics and do normal things that bring you pleasure: art, music, books, movies, shopping, cooking or hanging out with friends.

Stay in touch Syn. We are here if you need information, support or a shoulder to cry on.

Auntie Alexandra in Canada

I put a cap on when I go to the gym and use a swimming cap when I am in the pool. It made me feel more comfortable in the environment. 

Qing

syn said:

Thank you!

Everyone for your feedback. First of all, I am seeing a gynocological oncologist who has been in the field for 30 years, and his partner has as well for the same amount of time. However, he did tell me that neither him nor his partner had ever worked with a patient as young as me, so I assume that this could be part of why he's hesitant about full disclosure.

My doctor advised me to wait until after my chemo was done and the next surgery completed before I took the genetic test. However, nobody in my family (though I'm unaware of my paternal health history) has ever been diagnosed with any kind of cancer except lung cancer, and the two diagnosed with that were both my great grandmother and grandfather on my mother's side after they were 70 years old, and had been smokers for about thirty years of their lives (but had both quit decades before the cancer hit).

Why is it uncommon to do 6 rounds of chemo (I'm taking taxol/carbo) before the hysterectomy? What is considered "usual" practice?

They told me that my CA125 was 598 - what does this mean? All I really know is that it's some sort of cancer marker, but that it can be affected by a lot of different things.

The exercise ideas are great... The gym I go to has a pool and that sounds like an awesome idea. The only thing is that I'm very shy about going anywhere in public without a wig on, and obviously I wouldn't be able to wear it into the pool. With the scars I can cover up with a one piece bathing suit, but the hair is something that has completely distroyed my self esteem... Though I seem to get more compliments on my wigs than I ever did before the cancer, and it takes a lot less time to get ready. Fancy that! I suppose there's an upside to everything. My doctor put me on some anti depressants, but he also described it as the "starter dosage". It didn't seem to affect me at all. Anyone have any tips on the depression/low self esteem?

I'm sure a lot of this sounds like silly teeneybopper vanity to most of you and I apologize.

Medically speaking - if you have a gyn/onc treating you - you shoould be in good hands.  On the CA125 tumor marker - anything below 30 is considered normal.  Yes it can elevate for other reasons - but in that range - well you already know the answer to that as you have been diagnosed.  But as my doctor says it is only a #.  In other words 598 is not necessarily worse than say 400.  Its all about trends.  I was over 800 when I was first diagnosed. There are ladies on here who were over 1000.  None of those high #s are good - but they will watch trends as you go through treatment. Down is always good but it can jump around.  For instance if you marker goes down for a month or so and then jumps up a little bit - that does not necessarily mean the treatment is not working.  That is where that "it can elevate for other reasons" deal comes in to play.  I know that is vague and frustrating sounding - but believe it or not to some degree you will get used to the roller coaster that is ovarian cancer.  Unfortunately that is just part of it. 

My doctor put me on 10 mg of lexapro a day which was really to help with hot flashes and night sweats - worked great for that and I am pretty sure it helped me with anxiety/depression too.  If you don't feel like you are benefitting from what your doctor has prescribed - speak up - there may be something else. 

On the hair deal - although I am much older than you - I can or sure speak to this.  I always had long hair.  And it was what I thought to be one of my best features - in fact I probably worried too much about it and thought it helped to define me and who I was.  Well there is nothing like losing it all to make you adjust your thinking.  I actually never wore a wig - bought one but never wore it.  I just went with bandanas, scarves and hats.   Some ladies not only wear wigs they have tons of fun with them - Alexandra can tell you about that!  It was just never for me.  6 years later I have kept my hair short - never would have thought of cutting it voluntarilly but now that I have it I love it - so does my husband!   

Either way - here is the deal -  You have cancer and you are bald right now.  It will grow back.  But for now OWN it and be proud of it!  There is so much more to you than hair and chances are most people you know already know that.  The people who don't know you - well when they see you out and living life in spite of cancer - that says a lot more about you than your hair ever will!  So go out, go to the gym etc - with or without a wig or a cap! Remember it is only hair!  Our hair doesn't define who we are any more than having cancer does! 

Alexandra said:

Syn, did you get breast biopsy done?

How was it? When are results due?

Hugs,

Alexandra

I'm jumping in late to this conversation but wanted you to know that I'm sending lots good thoughts and prayers your way.  I have nothing to add to the good information provided to you by the other teal sisters, but know that I'm praying that your breast biopsy is negative and that your treatment kicks your cancer's butt.  I'm rooting for you from the sidelines!

Hugs,

Kelly

Cafewoman53 said:

Syn

You have gotten the best advice already, I just wanted to reinforce Alexandris' advice about being selfish at this time. You are in a fight for your life your energy needs to be focused on you. You love your family of course but the best thing you can do for them is take care of you.

 Also I think there is a program where you can be matched up with someone your age who is going through a similar diagnosis, I think it it through the American Cancer Society. The women here are very knowledgeable and are always willing to help.

Your age is on your side, my oldest grandaughter is eighteen and it breaks my heart to think that you have been dealt this but your youth will help you deal with the chemo and other surgery.

Colleen

Try tio stay positive it really helps. I know it is hard, but try.

My doctor counldn't remove my cervis or uterus becuase it was all stuck together, so these things do happen. Try to rest and take it easy for a few weeks and try to heal from the surgery and chemo.

I am praying for you

Alexandra said:

No way

Syn, forget rough estimates and donating body. Excuse my language, this is bullsh*t. I don't care how many years experience this doctor has, after telling an 18-year-old that she has 6 months to live, he should ask for a transfer to the nearest mortuary. Drop him. If anyone here has a reason to live, it's you.

You or your parents, pick up the phone today and make an appointment for the second opinion at a reputable Cancer Center: MD Anderson in Houston, TX or Memorial Sloan-Kettering in New York, NY or Mayo Clinic in Rochester, MN or Johns Hopkins in Baltimore, MD or Dana-Farber/Brigham in Boston, MA. Get all your medical records, pathology reports, blood test results, CT scan CD's and go there.

Ovarian cancer is rare by itself. Especially rare at young age. There were about 40 documented cases of ovarian cancer metastasized to the breast. The probability of what you are describing is so low, it's practically null. Which leads me to believe that your doctor or pathologist may have made a mistake about the primary and are treating you for the wrong cancer.

The fact that your chemo is not working, means that you are platinum-resistant. There are other types of chemo. They can switch you to Topotecan, Doxil / PLD, Avastin, Gemzar; there are several trials of new drugs being developed specifically for platinum-resistant ovarian cancer.

So eat your ribs, finish your pity party, get angry and start fighting this thing. We are all here for you.

Hugs,

Alexandra

Heed Auntie Alexandra or I wouldn't be surprised if she takes you in hand to one of these major cancer centers.  Please listen to her and run, don't walk, for a second opinion.  It's time to fight.

syn said:

I just spoke with my dr this morning about the biopsy and the chemo update. This will be short, sweet and to the point and I'll come back later to clear it up - just about to go to lunch with my mom. The lump was indeed the ovarian cancer. He said that it was very rare for it to have spread to my breast, but that it happens occasionally. He also said that the chemo didn't appear to be working.

So basically, they COULD try a different kind of chemo, but none of the doctors are optomistic about the odds of success. They're trying to do some biological testing on what they took out of the mass in my breast to see if there might be a different, viable avenue. Since it's so rare, especially with my age, perhaps there's a chance of them finding a weakness in it that they could exploit. So they gave me a rough estimate of six months to live in the meantime. And if that happens, I plan on donating my body to try to find a cure.

 

I'll pop back in later. Gonna go cry my eyes out over a rack of ribs or something.

I totally and wholeheartedly second Alexandra.   You chase up further opinions!  An aquaintance here kept chasing further opinions and on the 4th one found someone who could and DID help!  

We are all here for you!

Julie