New to this board and terrified

Lamarck98
Lamarck98 Member Posts: 6
edited March 2014 in Ovarian Cancer #1
Hello! My family doctor had me take both a pelvic ultrasound and that led to a CT and Xray after that. She referred me to my gynecologist/oncologist who was my surgeon as well. I was told that I had a huge cyst that was pressing against all of my organs and my ribs. He told me that it was an 80% chance that is was not cancer and a 20% chance that it was. I had a full hysterectomy 4 weeks ago and what was taken out of me weighed 30 pounds and that freaks me out! He gave my husband 3 photographs of the tumor mass after it was removed and it was larger than a huge watermelon. He diagnosed me with stage 1 ovarian cancer, and mentioned that it was an agressive one which really confuses me. How could it only be stage one when the mass taken out of me was so large like that? He tells me that I am cancer free, but is having me do 6 chemo treatments as a "preventative measure." He told me that I have an 85% to 90% chance of survival with a 10% chance of cancer returning. Yesterday I had my first chemo session and had a horrific reaction to the taxol, so they gave me Abraxane instead (which is basically another form of taxol with different ingredients which are derived from plants. I did okay with this and the carboplatin too. The taxol was supposed to be injected to my IV for 3 hours, but this Abraxane I only have to have it injected into my IV for 30 minutes. My carbplatin is injected for an hour after that. I am to do 6 of these chemo treatments once a month for 6 times. I have been reading this board the last 2 days and I am wondering if I am going to lose my hair before my second chemo treatment. Today I have experienced only gas pains and have been farting constantly all day long. I am wondering how come I am not feeling sick and if I am going to be start getting sick tomorrow or the next day. My gyn/oncologist told me that I might keep my hair, but it might thin a little bit when his chemo nurse told me that I would be losing my hair for sure. The oncologist nurse that administered my chemo treatment also told me I would be losing my hair for certain too, so after all of this, I feel like my doctor isn't telling me everything and likes to "keep me in the dark" so to speak and I am not going to tolerate that. The only time I get any answers is when I ask the right questions, but the conflicting messages from the doctor versus the nurses greatly confuses me. I read a posting about losing our eyelashes and this really upsets me even more because losing my hair is bad enough! I would appreciate any of you ladies input and feedback please. I am going to have to ask my doctor how large the dosages are of both my Abraxane and Carboplatin and how come the significant time change for the planned 3 hour injections of taxol and only 30 minutes for the Abraxane. I hope that my chemo "cocktail" is strong enough to kill all cancer if I have any more cancer cells in me. This posting is extremely long, so I am going to end it. Thanks for reading this.

Comments

  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    I was told that the TAXOL is the one that makes you bald.
    Did you get the entire bag of taxol infused before you had the reaction to it? I had my first round of carboplatin/paciltaxol on October 10, 2008 and was bald by Thanksgiving, so I think I had 2 of my 6 rounds of chemo in me when the hair started to fall out. That single round of taxol may have been enough for your hair to fall out (sorry); but I'd say you have a 50/50 shot that you won't lose your hair unless the Abraxane is a lot like taxol.

    The length of time the infusion takes doesn't really correlate equally with the strength or efficacy of the drug. Some people get their chemo on a VERY slow drip (6-7 hours instead of 3-4 hours) for exactly the same AMOUNT of the same drug, but eased in slower because their body tolerates it better of it goes in slow. Some drugs pack such a whallop that you only need a small bag infused.

    It sounds as if you were very very lucky to have found the OVCA in such an early stage! Please know what a blessing that was and take comfort in that. BIG HUG!
  • saundra
    saundra Member Posts: 1,370 Member
    Side effects and stages
    Stage I just means that your cancer had not spread, which is very good news. My Stage IV had spread all over including up to the liver.

    I had 8 doses of Carbo/Taxol and never did the side effects hit until about 70 hours after the infusion.

    At first I had a lot of deep bone pain in my legs, no nausea, lots of constipation. I had to use the magnesium that you get before surgery and that was no fun. I hope you are really pushing water and you can not drink too much. Most of us have to take a laxitive of some sort too. That starts immediately!!

    My hair started coming out three weeks after the first infusion so knowing that I was in for a lot of chemo I went ahead and had it shaved and started buying scarfs and wigs. Yes, Sweetie, the chemo does not care where the hair grows, it gets it all if you take enough. But you know it is entirely worth it if it kills all the bad cells. You just have to put things in perspective. Use lots of eyeliner. Oh yes, you will not have to shave your legs either!!

    Come back with your questions as you have them. (((Hugs))) Saundra
  • arbor3
    arbor3 Member Posts: 103
    LOSING HAIR
    HiMy first chemo was Taxol/Carbo and I lost the hair on my head and also all over my body.Second chemo was Abraxene/Carbo and also lost my hair, third round I was on Abraxane also and also lost my hair. My Toxol chemo took 5 hours, but when I went on Abraxane it was for 30 min.  Now I am on Doxil and I will see what happens.  It bothered me the first time but now I AM A TEAL WARRIOR and I just let the bald head hang out. I also got some baseball caps in all colors for when it is cold.
    I am so glad for you that it was caught in an early stage.
    HUGS!!!!!!!!!!!!!!!!!!DINORA
  • Lamarck98
    Lamarck98 Member Posts: 6

    I was told that the TAXOL is the one that makes you bald.
    Did you get the entire bag of taxol infused before you had the reaction to it? I had my first round of carboplatin/paciltaxol on October 10, 2008 and was bald by Thanksgiving, so I think I had 2 of my 6 rounds of chemo in me when the hair started to fall out. That single round of taxol may have been enough for your hair to fall out (sorry); but I'd say you have a 50/50 shot that you won't lose your hair unless the Abraxane is a lot like taxol.

    The length of time the infusion takes doesn't really correlate equally with the strength or efficacy of the drug. Some people get their chemo on a VERY slow drip (6-7 hours instead of 3-4 hours) for exactly the same AMOUNT of the same drug, but eased in slower because their body tolerates it better of it goes in slow. Some drugs pack such a whallop that you only need a small bag infused.

    It sounds as if you were very very lucky to have found the OVCA in such an early stage! Please know what a blessing that was and take comfort in that. BIG HUG!

    To Linda
    Did you get the entire bag of taxol infused before you had the reaction to it?

    Hi there Linda! No, the nurse doing the injection into my IV told me that she had barely released it to drip when she noticed I was having a reaction to it thank goodness, so it was only a tiny bit of the bag. I was lucky because my husband found out later that she was the head nurse, so she had lots of experience and was able to recognize my reaction and turned off the drip before I was able to tell her something was wrong. Initially, I was supposed to be injected with the Taxol for 3 hours before my one hour with the Carboplatin after that. The thought of experiencing the agony I felt when I reacted to it for 3 long hours scares the heck out of me. I really need to ask my doctor how large my dosages are and the Abraxane is a lot like the Taxol the head nurse told me. The way she explained it was that you know how a generic drug is the same drug as the name brand one, but it has a different "filler" to it? Well the Abraxane is basically the same drug as the Taxol, only it's "filler's" are of plant derivatives instead. Gosh all of this is pretty overwhelming and I have a lot to learn. Thank you for being kind enough to respond to my post and it is a great pleasure to meet you.

    By the way, I think your picture is adorable with your hairs growing back and it makes me smile. I get the impression that you have a really cute personality and eventually hopefully that will be me pointing to my own hairs growing back. =)
  • Lamarck98
    Lamarck98 Member Posts: 6
    saundra said:

    Side effects and stages
    Stage I just means that your cancer had not spread, which is very good news. My Stage IV had spread all over including up to the liver.

    I had 8 doses of Carbo/Taxol and never did the side effects hit until about 70 hours after the infusion.

    At first I had a lot of deep bone pain in my legs, no nausea, lots of constipation. I had to use the magnesium that you get before surgery and that was no fun. I hope you are really pushing water and you can not drink too much. Most of us have to take a laxitive of some sort too. That starts immediately!!

    My hair started coming out three weeks after the first infusion so knowing that I was in for a lot of chemo I went ahead and had it shaved and started buying scarfs and wigs. Yes, Sweetie, the chemo does not care where the hair grows, it gets it all if you take enough. But you know it is entirely worth it if it kills all the bad cells. You just have to put things in perspective. Use lots of eyeliner. Oh yes, you will not have to shave your legs either!!

    Come back with your questions as you have them. (((Hugs))) Saundra

    To Saundra
    At first I had a lot of deep bone pain in my legs, no nausea, lots of constipation.

    Hi there Saundra, it is nice to meet you. That is exactly what happened to me for the past 24 hours too. I have not experienced any nausea yet, but I have been feeling the bone pain in my legs, especially around my ankles and my knees and it hurts to stand up because my feet are aching. It is difficult to explain, but along with the joint pains, my muscles are all throbbing and aching too. I have felt sharp pains stabbing me prior to this and it still is happening. The pain is so excruciating too and the Darvocet that was called in for me does nothing to relieve any of it. Thank you for sharing. I really appreciate it. I find comfort in not being alone with this side effect because it is scary.
  • Lamarck98
    Lamarck98 Member Posts: 6
    arbor3 said:

    LOSING HAIR
    HiMy first chemo was Taxol/Carbo and I lost the hair on my head and also all over my body.Second chemo was Abraxene/Carbo and also lost my hair, third round I was on Abraxane also and also lost my hair. My Toxol chemo took 5 hours, but when I went on Abraxane it was for 30 min.  Now I am on Doxil and I will see what happens.  It bothered me the first time but now I AM A TEAL WARRIOR and I just let the bald head hang out. I also got some baseball caps in all colors for when it is cold.
    I am so glad for you that it was caught in an early stage.
    HUGS!!!!!!!!!!!!!!!!!!DINORA

    To arbor3
    Hi there arbor3! Thank you very much for sharing this with me so I can know what to anticipate. I know now what I am going to do to help me cope and deal with the my upcoming hair loss now. I am not going to wait for it to fall out because that is going to be really traumatic and upsetting to me. I am going to go ahead and cut off my hair and leave about 3/4 of an inch of it on my head. This will help me feel a little bit more in "control" of fighting this horrible cancer we all share I am thinking. I figure I can better handle watching 3/4 inch hairs fall out of my head as opposed to watching if fall out in chunks at a much longer length if this makes any sense. I really appreciate your input and feedback because I have been trying to sort out how to handle the side effects of my chemo treatments. I am still in shock about having ovarian cancer and everything that it entails is so overwhelming. Thanks.
  • BonnieR
    BonnieR Member Posts: 1,526 Member
    Welcome
    I see you already got lots of good responses so I'll just say welcome to the board. So glad to read your cancer was caught early and your Dr is wise to do chemo as a preventitive. :-) My next line chemo is Abraxane, you are usually losing your hair by day 14 and by day 21 you see shiny new head looking back at you. I actually just shave mine off when it starts falling out as the falling out part actually grosses me out. Sending lots of hugs n prayers your way. Bonnie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    Lamarck98 said:

    To arbor3
    Hi there arbor3! Thank you very much for sharing this with me so I can know what to anticipate. I know now what I am going to do to help me cope and deal with the my upcoming hair loss now. I am not going to wait for it to fall out because that is going to be really traumatic and upsetting to me. I am going to go ahead and cut off my hair and leave about 3/4 of an inch of it on my head. This will help me feel a little bit more in "control" of fighting this horrible cancer we all share I am thinking. I figure I can better handle watching 3/4 inch hairs fall out of my head as opposed to watching if fall out in chunks at a much longer length if this makes any sense. I really appreciate your input and feedback because I have been trying to sort out how to handle the side effects of my chemo treatments. I am still in shock about having ovarian cancer and everything that it entails is so overwhelming. Thanks.

    Learned of a clever "Pre-bald" strategy on another Board...
    We have a lovely woman posting on the Uterine Cancer Discussion Board that had her hair all braided into tight 'corn rows' BEFORE her hair started falling out from the chemo. Besides the rubber bands at the end of each tiny braid, she had rubber bands also fastened near the TOP of each braid. Then when her hair started falling out, it was held together by the braids. She snipped off all the braids, and had them very-tightly SOWN into the edge of a wig liner cap, like a 'halo' wig. She unbraided the hair, took the wig liner to her hair stylist for them to GENTLY cut and style the hair so it looked nice. And now she wears her OWN HAIR under her many hats and caps!! I thought that was sooooo clever and so unique! So if my hair grows out long enough and I ever have a recurrance (God forbid!) I will do the same before I have chemo again. If there's still time and your hair is long enough, and hairdresser brave enough, you may want to give this a try.

    My last chemo round was March 26th and I still don't have leg, underarm or pubic hair yet, but I DO have eyebrows and lashes again and 1/2" very thin peach fuzz coming in on my head. I haven't bought shampoo or disposable razors in SOOOOOOO long! I think I'll treat myself to the top of the line in both next time I go shopping!

    :D
  • green50
    green50 Member Posts: 312
    BonnieR said:

    Welcome
    I see you already got lots of good responses so I'll just say welcome to the board. So glad to read your cancer was caught early and your Dr is wise to do chemo as a preventitive. :-) My next line chemo is Abraxane, you are usually losing your hair by day 14 and by day 21 you see shiny new head looking back at you. I actually just shave mine off when it starts falling out as the falling out part actually grosses me out. Sending lots of hugs n prayers your way. Bonnie

    Taxol and carbo
    First time I had chemo I had these. Stomach drugs, including steriods half hour, 3 hour taxol and 2 hour carbo. No stomach problems, I ate while taking it. Yes 3 days later had the weakness and foggy head got over that in a few days then just weakness. Was bald after couple rounds. Had six rounds. And these other ladies are right better your hair then your life. I have lost mine 5 times and getting ready for some more so this time no chance of hair again but it does grow back each time and sometimes different color or wavy. My wonderful gray comes in first then the brown. I have stage 3 ovarian. I will bet you will be just fine. Let us all know and a BIG WELCOME TO OUR GREAT SUPPORT GROUP. Seven year survivor,
    Prayers and Hugs
    Sandy
  • luvseals
    luvseals Member Posts: 20
    Also new to this board and Very Scared...
    Sorry, I wasn't sure how to post a discussion topic, so I just posted it under a reply and then figured out how to post a new topic, so I removed it from here and started a new topic any and all responses are greatly appreciated. :)
  • ladyjogger31
    ladyjogger31 Member Posts: 289
    luvseals said:

    Also new to this board and Very Scared...
    Sorry, I wasn't sure how to post a discussion topic, so I just posted it under a reply and then figured out how to post a new topic, so I removed it from here and started a new topic any and all responses are greatly appreciated. :)

    Welcome
    Hi, you have gotten some really good advise already. Come here as often as you want. The lasdies on this board are awesome and so full of knowledge.
    I will be keeping you in my thoughts and prayers.
    Hugs, Terry
  • lnyeholt
    lnyeholt Member Posts: 59

    Welcome
    Hi, you have gotten some really good advise already. Come here as often as you want. The lasdies on this board are awesome and so full of knowledge.
    I will be keeping you in my thoughts and prayers.
    Hugs, Terry

    Chemo
    I completed my second treatment of carboplatin & taxol two weeks ago. My hair started coming out two weeks after the first treatment but it came out evenly rather than in clumps. I had my hairdresser shorten it and although it is VERY thin I still have even coverage over my entire head. I decided to leave it because it seems more comfortable to have some hair under a scarf or wig. What is left stopped growing - it was colored a week before my first chemo and six weeks later there are no roots at all!

    The only advise I would add is to be very proactive with the doctor who is treating you, who I'm assuming is a gynecological oncologist. Don't be afraid to ask questions or seek the opinion of other medical professionals.

    I had numerous problems after my first treatment. I ended up in emergency due to constipation problems despite being proactive about laxative, stool softeners, etc. In my case, I needed to be very aggressive with the quantities due to existing conditions of IBS & fibromyalgia. At first, my doctor wasn't really taking those into account. I also had a problem with a blood clot in my neck from my port and ended up hospitalized and in tremendous pain. My side-effects were unusual but I should have been much more aggressive and sought advise and treatment at the first sign of trouble rather than seeing if they would resolve eventually with what I was doing at home. I also should have been much more emphatic with the doctor about how my body tends to respond and more insistent about more aggressive treatment, in the case of the blood clot, when at home care was obviously not working.

    I also have the bone, joint and muscle pain, which starts on Day 3 or 4. I also am so exhausted that I spend at least two days in bed sleeping round the clock. I'm only on my second treatment but I'm finding that although I don't have my normal energy level, I'm pretty good by day 10 and today, which is one week before my next treatment, I feel almost normal.

    If your cancer, like mine, was Stage One that means that it was contained in one or both ovaries and there is no sign of malignancy in your lymph nodes, abdominal organs, etc. Your doctor can provide you with a written report from the lab that examined the tissues removed and anything biopsied.

    Welcome to the board and good luck with your treatments!

    Lyn
  • kayandok
    kayandok Member Posts: 1,202 Member
    welcome
    Dear Lamarck, I just wanted to chime in and say welcome to the board and add my two cents. I know loosing your body hair is a shock, but once you can accept it and realize that it is for a good reason and it will come back it is not that bad. Take a look at the "bald is beautiful" website for some inspiration. I agree with the other gals, I just shave it all off, slather on the make up, wear colorful earrings, get a great wig and some really funky hats. I had to go to my son's school the other day for a year end party and got so many compliments on my funky hat and earrings. I feel good about myself and it is usually contagious. No even thinks of me as the "cancer patient", although I do not keep it a secret at all.

    Take good care and keep you chin up. You can do this! And your prognosis is so good at stage 1!!

    Warm hugs,
    kathleen:)