Carbo Taxol 3 week cycle experience?

bluesmama
bluesmama Member Posts: 125 Member
edited February 2017 in Ovarian Cancer #1

Hey folks,

Most of the carbo-taxol regimens I've read about appear to start with carbo-taxol, then weekly taxol. I'm getting carbo-taxol in a single large dose then will get three weeks rest. And I'll do this 4 times. Have any of you have the latter regimen? What were your side effects like and how long did it last?

I just finished up chemoradiation with cisplatin (50mg/m2). I was sick for 11 days for each of the two doses. I was pretty sick the first cycle but the second cycle was managed better with round the clock meds.

My doctor said the carbo-taxol should be easier but I'm skeptical. Your thoughts would be much appreciated.

Comments

  • Soup52
    Soup52 Member Posts: 908 Member
    I'm from the uterine board,

    I'm from the uterine board, but many of us have similar treatments to yours. I had six rounds of carbo taxol every 3 weeks. It was doable for me. I never had a problem with blood counts. While I always went through a period of not feeling great I stayed ahead of nausea by taking the recommended pills. My effects were mostly tired and not hungry. Best of luck!

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited January 2017 #3
    "Bluesmama"~U probably won't B nearly as ill w/new chemo regimen

     Good afternoon “BluesMama”

     Hope you’re not too blue today, even though neither of us are excited to be on a chemo regimen.  My regimen seems to be the same as “Soup’s”.  This is the third series of Chemotherapy treatments consisting of Carboplatin & Paclitaxel (Taxol) since my diagnosis in November of 2012.  The regimen consists of 6 treatments, each one being at 3-week intervals.  Usually I have a CT scan after the 3rd treatment to check its effectiveness. 

     Each time this regimen has “quieted the spread” for a while.  That period of time when the cancer is not running rampant seems to last for about a year.  So I consider that a good period of progression free survival (PFS) which is the most a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer Stage IV patient can hope for. 

     Like Soup said, she took her anti-nausea pills on a regular basis.  Now there are a multitude of symptoms that one can have when taking either of these drugs, so although I’ve probably given you the links before, I will list them again.  No two people will experience the same side effects.  I’ve never had a nausea problem except when I took one injection with Neupogen.  I was so sick for two days that I couldn’t think of eating.  So I asked my doc to never give me that again.  And there as well, some people have no ill effects with Neupogen, but I did.  After each of my treatments, I return the following day for a “Neulasta” injection and also hydration.  I’ve never had a low WBC as a result of this regimen.  Also I wrote a letter to “Brian” once in things I had found helpful. I will put that link here as well.

     Now I’ve found a product known as “BIOTENE”.  (Prices will vary greatly depending on where you buy it.  I get mine from COSTCO for the large bottle for $8.49.) Or you can mix up your own formula with water and baking soda as I outlined in my tips to Brian.  Biotene is an oral mouth rinse that my dentist recommended.  I use it frequently during the day.  I brush my teeth after meals and use a SOFT toothbrush to massage my gums.  That’s important too.  My oncologist advised me to keep something in my mouth that was in the “cold category” because the colder, the better.  That keeps the chemo was circulating as well where it doesn’t need to go in the first place.  It can cause damage to the gums, and cause the teeth to loosen in time.  My husband had firsthand experience with that as a result of his Carboplatin-5FU regimen.  And in talking with others, he isn’t the first one.  Ultimately implants were necessary, so don’t want to scare you, just try to eat cold things at least for the first 24 hrs. after treatment.

     And no doubt the TAXOL has probably resulted in hair loss right away.  Mine started the second week.  And so the third time around, I didn’t bother to go to the beauty shop, I just shaved it off myself.  Now try not to worry about things that MAY happen—we’ve got enough present-day problems.

     I would much prefer the latter treatment.  Sounds like our treatments are identical, except my series last for 6 weeks instead of 4.  Hydration is very important.  You may find that you have an extremely dry mouth with this treatment, and it’s important that your mouth be moist at all times. 

     And I would ask for the white blood count “booster” injection, either of Neulasta or Neupogen.  I started having intense pain a couple of hours after I got that first shot of Neupogen, and had to go to the ER to get an injection for severe pain up and down my spine.  I never had that after switching to Neulasta.  And no I don’t own any stock in Neulasta!

     Hopefully, you will see a big reduction in the CA-125 marker during this time of treatment, and I would wish for you a long period of time when the cancer is “pooped out” instead of you!   It’s a New Year, and I wish a long period of progression free survival for all of us!

     Love Loretta

     ___________________________________________________________________



     “…The following side effects are common (occurring in greater than 30%) for patients taking Carboplatin:

     Low blood counts (including red blood cells, white blood cells and platelets)

     Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

     Onset: None reported
    Nadir: 21 days
    Recovery: 28 days

     _________________________________________________

     2.  http://chemocare.com/chemotherapy/side-effects/taste-changes.aspx

     Helpful things to counteract side effects

    _________________________________________________

    3.   http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx

     “…The following Taxol side effects are common (occurring in greater than 30%) for patients taking Taxol:

    • Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.
    • Hair loss
    • Arthralgias and myalgias, pain in the joints and muscles. Usually temporary occurring 2 to 3 days after Taxol, and resolve within a few days.  
    • Peripheral neuropathy (numbness and tingling of the hands and feet)
    • Nausea and vomiting (usually mild)
    • Diarrhea
    • Mouth sores
    • Hypersensitivity reaction - fever, facial flushing, chills, shortness of breath, or hives after Taxol is given.  The majority of these reactions occur within the first 10 minutes of an infusion.  Notify your healthcare provider immediately (premedication regimen has significantly decreased the incidence of this reaction)…”

     ______________________________________________

     4.  http://chemocare.com/contact.aspx

     “…Have questions about chemotherapy? - Call the Cancer Answer Line at Cleveland Clinic – 1-844-268-3901…”

     Note to BluesMama – I’ve never called this line but it seems to be open to anyone who has a question, and I certainly don’t think it should it cost anything.  I’m putting it here based on the excellent info they provide on the chemocare.com sites.

     ________________________________________________________

      5.  http://csn.cancer.org/node/301646

     “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”__________________________________________________

      ________________End of references______________

      

  • bluesmama
    bluesmama Member Posts: 125 Member
    I have gum recession too...

    I had to go to a periodontist and she confirmed what I feared. The cisplatin destroyed my gums and there's bone loss. It's quite severe. But she said not to worry about tooth loss and we'll start treating the issues when I'm done with chemo. Interestingly enough, I haven't had a cavity in 20+ years. Unfortunately, I can't keep cold things in my mouth. Too sensitive.

    How long was it before your hair started to fall out? I want to plan a shave my hair party and it appears the hair loss typically begins around the 10-14 day mark after my infusion. Your experience? How about your nails? Did they fall out? 

  • Soup52
    Soup52 Member Posts: 908 Member
    edited January 2017 #5
    Loretta says it all:) I didn

    Loretta says it all:) I didn't mean to have mine sound like a walk in the park, but it was worth it. I haven't been to the dentist since finishing chemo and all of this is a strong reminder that I need to get there!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    edited January 2017 #6
    bluesmama said:

    I have gum recession too...

    I had to go to a periodontist and she confirmed what I feared. The cisplatin destroyed my gums and there's bone loss. It's quite severe. But she said not to worry about tooth loss and we'll start treating the issues when I'm done with chemo. Interestingly enough, I haven't had a cavity in 20+ years. Unfortunately, I can't keep cold things in my mouth. Too sensitive.

    How long was it before your hair started to fall out? I want to plan a shave my hair party and it appears the hair loss typically begins around the 10-14 day mark after my infusion. Your experience? How about your nails? Did they fall out? 

    hey bluesmama, I had posed

    hey bluesmama, I had posed the question re: teeth to the women on the Uterine board about a year ago.  I had never really had any issues with my teeth and then after I had Carbo and Taxol -  I got a cracked tooth - long story short - was it because of the chemo???  I really don't know for sure but I guess it could be a contributing factor.  

    Miss Loretta brough up Biotene.  My dentist had given me a sample when I was going through chemo - to help keep my mouth moist during treatment.  I didn't use it but I could see it what it does could have a good effect. 

    Hair really coming out around 10-14 days?  That sounds about right for a lot of us.  I didn't lose my nails, I don't see a lot having talked about that - but I guess it is possible.  I know women who have had "red devil" chemo for breast cancer who have had that happen.  I will say a HAIR PARTY sounds like a great idea.  I wish I could have been that brave.  I love to hear women who can do this.  

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    bluesmama said:

    I have gum recession too...

    I had to go to a periodontist and she confirmed what I feared. The cisplatin destroyed my gums and there's bone loss. It's quite severe. But she said not to worry about tooth loss and we'll start treating the issues when I'm done with chemo. Interestingly enough, I haven't had a cavity in 20+ years. Unfortunately, I can't keep cold things in my mouth. Too sensitive.

    How long was it before your hair started to fall out? I want to plan a shave my hair party and it appears the hair loss typically begins around the 10-14 day mark after my infusion. Your experience? How about your nails? Did they fall out? 

    BluesMama~It's me again~I Have a suggestion re that hair party!

     Hey there “BluesMama”-  It's Loretta again

     You’d better plan that hair party no later than a week after your first infusion because “Taxol” wastes no time.  I’d like to make a suggestion.  You know how we used to have “baby showers”.  Now I’m no longer getting invitations to baby showers because I’m 78 and move in a different circle of friends.

     First they should take you out to lunch.  They I suggest they accompany you to visit a Shoppe that specializes in wigs, hairpieces, hats, scarves, turbans, etc.  I think they should buy you a beautiful turban, but they should get together and not choose the same color.  They will be happier to see that they have given you something that will benefit you.  Frankly, I don’t know that your friends will be too happy about seeing you lose your hair, unless they’re going to shave their head as well.  For me, the first time around, it was not a “happy occasion.”  I had hoped that it would just get thinner, but each time I brushed it, it came out in clumps.  So I finally went to the beauty shop and had it shaved.  But by the third time around, I just shaved it myself.  I suggest you save a sample so, if you get a wig, you can match the color.  Or better yet, go down to a wig shop now, try on some wigs and get at least one that makes you feel as pretty as you probably are.  That’s what I did.  But it was not a particularly happy day.  I didn’t look forward to losing my hair.

     Another thing that I have done.  All through my cancer experience, I have had my husband turn on the camera and I have recorded honestly my thoughts about how I’m feeling, or the things I am not looking forward to.  I had him make a tape while I was at the wig Shoppe.  And during my devotional time, I’m writing notes, and it is interesting how I felt about things from one year to the next.  I am now entering my 5th year of survival (though not progression free) and am pleased to still be alive.  And like my friend, Soup, it hasn’t been a walk in the park, but so far it’s been worth it.  There will no doubt be a day when things change, and the Lord will have to let me know when it is no longer worth it.  But I’m not there yet, and neither are you, so live today and enjoy and appreciate the things you can still enjoy despite the cancer which we so despise.
      

     At the oncology lab, there is always a place with hats, wigs, scarves and knit caps are displayed.  They are free.  There are different groups of church ladies that knit caps in all sizes, and bring them to the lab and donate them.  I have written them a letter of thanks, because I have several of their knit hats.  At home I don’t want to wear a wig, and most of the time, I wear one of those knit hats.  Now sometimes my head starts to sweat and I yank the hat off.  Then in a little while, I feel chilly and I put it back on. 

     Now don’t know about you, but I was so weak from the first series back in early 2013 that I couldn’t walk up and down our driveway twice without having to sit down or lay down.  My husband had to push me in a wheelchair when we got to the lab for infusions.  There was a good distance to where I checked in at the front desk, to where I went to the lab for my CBC, then down another hall to see the oncologist prior to my “all-day” infusion.  I’m sure you have a medi-port.  Egads if you don’t, request one.  But first there were some preparatory drugs I was given before the separate bag of Carboplatin was given, and then another bag of Taxol.  All in all, it was no less than 6 to 7 hours on the day I went to the lab. 

     (A note to my friend “Soup52”.  I read between the lines in your post.  I know what you mean by “being tired.”  Now I’m into my third series and am very fatigued.  Getting up and down out of the chair requires a lot of energy.  I ask my husband to “go and get” things for me that normally I would have gotten for myself.  I have to turn sideways to see your picture, but I do think you’re seated in a recliner, and I see an infusion pump beside you.  So no, I didn’t think you made it sound like a piece of cake.  You’re just being kind and don’t want to scare the “newbies” too much.  Granted, all do not respond in the same way, but I’m the type who wants to know the worst thing that could possibly happen, and then pray it doesn’t happen to me.  But if it does, it won’t take me by surprise.  I always “overdo” instead of “under do”.  That’s often a curse.  My husband often says, “Loretta that’s not necessary.”  And I say, “Well, maybe not for you, but I think I should do this or that.”  Once I took a trip to the Holy Land.  The tips on packing said, “If in doubt, leave it out!”  Nope not me, “If in doubt, I threw it in.”  And after a few changes from one airport to another, I said, “I shouldn’t have packed so much!”  So I’m guilty of trying to “put everything in” even on one of my posts here. )

     Now back to how I compensate when coping with cancer.  I have purchased several “pretty colored canes” because I have some neuropathy in my left leg that did not go away after the first series of treatment.  (This 3rd time around, I’m experiencing more tingling in my hands and finger tips.)  So around the house, I can catch myself before I fall, but I’m not vain enough to risk falling out on the sidewalk.  I bought some beautiful colored canes from CVS pharmacy.  Let’s see I love animal print, so I have an animal print, a floral one, a black, a teal, a gold, and a cobalt blue one.   Now at almost 78 (birthday Feb. 12th) and with what used to be white hair, I’m not going to be mistaken for Marilyn Monroe.  

     And as for not being able to keep cold things in your mouth, Biotene makes a mouth Jel, as well as toothpaste & a liquid that helps with keeping the mouth moist.  Mouth sores can be a problem too, as well as problems with the teeth and/or gums.  Do you have a favorite kind of hard candy to suck on, or a favorite chewing gum that you could chew that would keep the saliva glands working?  Sometimes I wake up during the night and my mouth is parched.  So I just regularly use the mouth rinse several times a day and even at night should I awake. 

     And can you request that a hydration treatment be scheduled for you after each infusion?  I return the following day for hydration and a booster injection of Neulasta to keep up my white blood cell count.

     While I’m throwing in everything but the kitchen sink, I will tell you that I’m on Coumadin for blood clots that have developed in both legs.  They both did not occur at the same time, but I noticed that my leg was a bit swollen, felt warmer than the other one, and seemed to be a bit “splotchy” as to the color of my skin.  An ultrasound is the only way to definitely determine if you have a blood clot.  Mine are located below the knees.  At home I wear a support sock that comes up to the knee.  That helps.  This can happen so just pay attention to your lower extremities.  But sometimes my legs and/or feet will swell for a couple of days and then everything is okay again.  Don’t be afraid to call your doctor or nurse anytime you feel something is out of the ordinary.  They can help to allay your fears. 

     Believe it or not, I may sound like I’m falling apart, but I still have a lot of good things going for me.  I can still see, hear, and enjoy my family and friends.  I have a good rapport with all my doctors and they have “always” worked me in if I thought I needed to see them.  I still am in my right mind, and have a good sense of humor.  God’s presence and peace are very real in my life.  One time in my life, I didn’t know how to interact with those of my friends that had been diagnosed with cancer.  I visited with them, cooked for them, cleaned their house, etc. but always felt there was a “wall between us” as far as understanding how they felt.  Of course, I felt sorry for them but still felt as a loss as to how best to be a comfort to them.  Now I know.

     And I would say one more thing about friends that have been diagnosed with cancer.  Instead of saying, “If there is anything I can do for you, please let me know.  I’ll be glad to do it.”  Why not take a look around and, if you see absolutely something that you can do, and if you’re a close friend of that person, why not reword the request?  Can you take them somewhere they need to go?  Can you cook their favorite food? In other words, look around, and if you know there is definitely something that you could do to help, why not JUST DO IT!  Knowing what I know now, I would probably say something like, “I’m not here just to visit.   I want to help.  Then name something you would like to do that you know needs doing.  They will probably say, “Oh no you don’t have to do that.”  And I would say, “Well, I know I don’t HAVE TO, but I WANT TO.”  Well—that’s just me. 

     Many things have to go undone once we’re coping with cancer, and few of us have help like “The Elves and the Shoemaker” that appear in the night while we sleep, and do all the things we need doing.  At my house, I’ve solved some of the problems of housekeeping.  A simple sign like, “You can touch the dust, but please don’t write in it!” works well!  I am blessed to have a husband who works right alongside me all day long.  He helps with all the chores every day, and drives me to all my doctor’s appointments and stays with me all day during my infusions.  And I know that everyone doesn’t have that luxury, so I really am blessed and thank God for a helpmate that is still alive after being diagnosed with advanced Esophageal Cancer himself back in 2002! 

     And “BluesMama” stressing out over your gum issues is understandable, but it will have to WAIT for certain.  For anyone else who might read this and is on the verge of having chemo, hopefully your doctor has advised you to have your dental checkup done PRIOR to starting chemo. 

     Although you can’t keep something cold in your mouth, to ward off mouth sores as much as possible, brushing your teeth often, massaging your gums, and keeping your mouth moist is basic maintenance.  My husband didn’t lose his first tooth till about 4 to 5 years afterward.  One day he was eating an “Almond Joy” and bit down on the almond.  Out popped one of his FRONT TEETH!  By Christmas we taped him singing “All I want for Christmas are my two front teeth!”  For a time he wore a partial plate, till so many fell out there was nothing left to fit them on.   So then we tried “Fixodent”.  Well, perhaps it might “fix a dent” but it certainly didn’t last all day!  And it’s not a good idea to keep the “Fixodent” and the “Toothpaste” lying next to each other on the counter top.  I’ve almost brushed my teeth with it more than once.  But we don’t need that anymore, although I want even begin to tell you what it costs for implants.

     And don’t believe those ads on TV that show a person going in and out of the dentist’s office in one day, bragging about their new set of teeth.  It’s quite a long time between the beginning visit and the final fit!  So I wouldn’t be a good TV commentator for that company.  Maybe the commercials don’t run on your station but they do on ours, and I say, “That’s certainly a false advertisement.”  My husband’s face looked like he had the mumps.  It was a painful process.  The dentists were amazed that his face was not also black & blue.  Thankfully, the gums were in good shape, otherwise implants would not have been possible.  Now as for me, I know that tooth loss is a possibility but when I think about it, I put it on the back burner because it is not something I can do anything about TODAY!

     Now while we’re talking about hair loss, it may mean more than just what is on top of your head.  I have absolutely no eye lashes, and only a faint resemblance of eyebrows.  I don’t have to worry about shaving my arms and legs anymore. 

     It wouldn’t hurt for you to take in as much protein as you can in your diet.  I’ve gone recently through a period where the food tasted bitter, but that only lasted about a week or so.  I like Milk and that is good for you.  As for my fingernails—no they didn’t drop off, but they are “brittle” and break off easily, so keeping them short works better for me.  But all those things can grow again.  So when you don’t like what you see on the outside, think of it as a sacrifice in order for your “insides” to get rid of the cancer. 

     My dear mom passed away at age 99 back in 2013.  She had a good sense of humor.  She described beauty like this, and when I put on my makeup in my 10X magnifying mirror, I have to agree.  She said “Beauty is like a rose.  First we are like a lovely rosebud with dew dripping from its petals.  And one by one, the rose begins to open up.  Then little by little, they begin to wither and drop off—and before you know it, you’re just an old “seed pod!”  These days, I take a look in the mirror and say, “Oh mama, you’re right.” And I realize that I’m one of the “older” ladies who post on this site.  All I have to do is look at some pictures of me in my younger years to know that fixing my hopes on looks is pure vanity.  I’m down to the last petal—the dew drops are no longer falling. 

     I’m also reminded of another birthday card my friend sent me a long time ago.  It read like this:  I asked the Mirror on the Wall, Who is the fairest of us all?”  (Inside the message read—“She said it wasn’t anybody we knew!  --- Now the consolation is that God looks on the heart and physical beauty really is only skin deep.  But God sees every teardrop that falls and that’s a good thing!  But we don’t mind wrinkles in our old age, we would just love to be cancer free, but that’s beyond our control.    Thank God for Vaseline Intensive Care-Advance Repair for very dry skin!  Thankfully, I’m glad tattoos weren’t popular in my youth, because only God knows where that lovely flower would be today—probably down on my kneecap!  So do what you can while you can, remembering all the while that…

     “Life isn’t about waiting for the storm to pass—It’s about learning how to dance in the rain!”

     Love Loretta

     P.S.  While I write here, my husband “William” and I have been interacting with patients on the Esophageal Cancer site for years.  I remembered this one particular fella, who called himself “FunGuy” because he told us about his problems with his teeth.  Others came along and told about their own problems with teeth damage due to chemotherapy.  But hey, it’s worth losing all your teeth if it would mean a trade-off for years of being cancer free.  So here is his story if I haven’t depressed you enough!  That is not my purpose here—I really mean to inform but not depress you.

     http://csn.cancer.org/node/230868

     

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited January 2017 #8
    Thanks ladies!

    Ok. So plan on buzzing my hair a week after my first infusion. Yikes. I guess I better start planning now. My hair is already really short. I got it cut by a barber last week and it's already growing out fast. I'm one of those folks that has about an inch of hair growing back every month. Pic attached. So it's probably really a matter of the top of my head matching the length of the sides at this point. I'm really not thrilled by the idea of using a razor and risk nicking myself. Or would you really recommend shaving it down to the skin?

    image

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    mama, I was concerned about

    mama, I was concerned about cuts too.  My wig shop used an electric razor to buzz it all off so it was peach fuzz that all fell out after the chemo.  I had used a t-shirt on evenings and weekends wrapped around my head and then I would use the t-shirt to rub my head when it was itchy.  I still remember how much it itched!  There are videos out there on out to make a turban out of a t-shirt.  I went to Goodwill's 99 cent Sunday and would look for designer t-shirts because they have the best colors.  

    Miss Loretta does remind me about losing my hair EVERYWHERE.  No shaving was nice.  

  • Soup52
    Soup52 Member Posts: 908 Member
    Hair- I was very sad to lose

    Hair- I was very sad to lose mine, but I knew it would happen so I went wig shopping with my friend before it happened. The color and style was then very close to mine. My picture was during my first infusion before hair loss. Oh and my wig was rather expensive but it was worth it to me. (Ah vanity) I had my hair shaved at the spa where I purchased the wig before my second infusion free of charge. Now my hair is growing back and quite short. I had it colored which some people don't agree on doing, but yes I'm vane. I don't bother with the wig anymor. People tell me I look good with short hair, but I want my hair back, whine whine! One of these days I'll take a pic and replace my sideways pic. I gave up trying to correct it, ha, ha! Teeth- my dentist gave me special toothpaste that contained extra fluoride. I'll soon see if it did the trick! Neuropathy- Eek, I forgot to mention that I have it in both feet and some in my left leg. Of course they say it may resolve itself, but it doesn't seem to be, so I suspect it will stay with me. Blood clots- this is something I am very aware of since I had one 9 1/2 years ago a week after donating a kidney to my daughter. I remind the docs constantly about the fact that I've had one and that I only have one kidney. They have prescribed the lovastat (not spelled correctly) Shots when I took a short trip during treatment 

  • bluesmama
    bluesmama Member Posts: 125 Member
    #1 of #4 chemo done

    The Benedryl made me really sleepy but the infusion is done and I got 7 hours of good sleep when I got home around 4:30PM. I did ice my hands and feet and it was pretty easy. I feel great so far but I'm sure once the meds wear off I'll feel crappy. How crappy is the question. 

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    bluesmama said:

    #1 of #4 chemo done

    The Benedryl made me really sleepy but the infusion is done and I got 7 hours of good sleep when I got home around 4:30PM. I did ice my hands and feet and it was pretty easy. I feel great so far but I'm sure once the meds wear off I'll feel crappy. How crappy is the question. 

    It's Loretta~1st dose sometimes easiest~crappy can B cumulative!

     Hello it’s Loretta again~

    Just enjoy the good nap you had.  The Benadryl worked just the opposite on me.  That was smart to keep your hands and feet as cold as you could stand it.

    With my Benadryl preparation, at my very first session.  My speech got slurred and I was drowsy for perhaps 15 minutes.    My tongue lagged behind what I was trying to say, and thoughts of things that I wanted to say zipped across my mind in a flash before I could get them out.  Then I forgot what I was saying.  After the initial beginning of the dose, I had “restless legs” for an hour before it wore off and that was the worst part of the treatment for me. Now the nurse has reduced the amount of Benadryl and it cured the “restless legs” problem, but it still didn’t make me go to sleep.

    (I skipped over the first part of my bad experience in which my spine started jerking from the neck down to my pelvis, I almost passed out, and that happened in the first 2 minutes of the first treatment.  I actually thought I was dying, and my husband said, I turned beet red all over.  The nurses right outside the door, quickly shut off the flow and put something in to “revive” me.  The jerking was akin to a “road worker operating a jack hammer breaking up concrete!”  That was scary and a very long day.  I was there for at least 9 hours.  They got in the first treatment but not before they did something to control my spine problem.

    Now usually the first dose is the easiest dose.  “Chemo crappy is cumulative.”  Extreme fatigue seems to be a good buddy to all of us.  But there again, each patient will be different.  The good news for me today is that I finished up my 5th of 6 treatments I will have on this go round!  On October 20, my CA-125 count was 325, today it is 24!  So while some new tumors may have cropped up, others have decreased in size or been killed.  That’s good news and I’ll take it and be happy.  Hopefully, you will have the same good results at the completion of your treatments. 

    And I would agree that you should have your “hair party” early.  And I used the expression “shaved” in my other letter to you, but actually I’ve cut my own 3 boys hair from the time they were small, as well as my husband’s hair.  I’ve bought several new pairs of clippers in my lifetime, but they don’t cost any more than any two visits to the barber.  So I just used the longest attachment to the clipper set to take off the bulk of my hair, then I go over it again with the shortest attachment.  And then I used an “electric” razor to remove the short stubble.  My husband does the back part for me.  The first time my hair came back curly for only a short time, and then it straightened out.  Fortunately for you, your hair must grow rapidly, because I only average 4 to 5 inches in a whole year.  It had just grown out enough from the second set of treatments for me to get a permanent.  So I did.  That lasted only about a month before I had a PET scan that showed more cancer.  And that’s why I’m on this 3rd set of treatments.  Something’s working and I’ll settle for that. 

    One more thing about hair—I have nary a hair on my eye lids and I can practically count the hairs on my eyebrows.  I’m taking a light brown eye pencil and drawing a line where they use to be on the part closest to my nose.  Then I “smudge” it with a Q-tip to soften the look.  It’s better than only “half a brow.” I was a “strawberry blonde” in my youth, prior to my hair turning white.  And I don’t mind white, it fits well on my almost 78 year old body.  So my brows and eyelids were never very dark, but I guess in this situation, “Half a brow is better than none.”  But that’s something we women can work around.  It’s the things going on inside that we can’t control.  

    So try not to get too far ahead of yourself.  You may weather the storm quite well.  By the way, it’s your gums that need messaging with a soft toothbrush.  When the chemo damages the gums that’s when the teeth will loosen.  And that’s why it’s smart to keep something cold in your mouth when you can, but you said that was a problem.  But for those who don’t have a problem, and are in the process of chemo treatments, the cold will keep the chemo from circulating around them because the blood vessels constrict when colder, and serve as somewhat of an icepack to that area, as much as if they had their normal blood supply.

    Wishing you many good days and few side effects.

    Love Loretta

    ______________________________________________________

     P.S.  Here are a few links regarding “cold” relative to chemo treatments for mouth and some experimental trials relative to hair loss

     Chemotherapy and Your Mouth

      1. How Does Chemotherapy Affect the Mouth?
      2. What Mouth Problems Does Chemotherapy Cause?
      3. Why Should I See a Dentist?
      4. What Will the Dentist and Dental Hygienist Do?​
      5. What Can I Do To Keep My Mouth Healthy?
      6. Do Children Get Mouth Problems Too?

     How Does Chemotherapy Affect the Mouth?

     Chemotherapy is the use of drugs to treat cancer. These drugs kill cancer cells, but they may also harm normal cells, including cells in the mouth. Side effects include problems with your teeth and gums; the soft, moist lining of your mouth; and the glands that make saliva (spit).

     It’s important to know that side effects in the mouth can be serious.

    •  The side effects can hurt and make it hard to eat, talk, and swallow.
    • You are more likely to get an infection, which can be dangerous when you are receiving cancer treatment.

    • If the side effects are bad, you may not be able to keep up with your cancer treatment. Your doctor may need to cut back on your cancer treatment or may even stop it….

      What Mouth Problems Does Chemotherapy Cause?

      You may have certain side effects in your mouth from chemotherapy. Another person may have different problems. The problems depend on the chemotherapy drugs and how your body reacts to them. You may have these problems only during treatment or for a short time after treatment ends.

    •  Painful mouth and gums......Dry mouth......Burning, peeling, or swelling tongue......Infection......·         Change in taste…”
    • _________________________________________________________________________

     2.  http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486

    3.  http://chemocare.com/chemotherapy/side-effects/hair-loss-and-chemotherapy.aspx

    4.  http://www.post-gazette.com/news/health/2015/07/28/Ice-caps-can-prevent-hair-loss-during-chemo/stories/201507280007

     “…When Ms. Nyalka brought up the caps with her doctor, he didn’t discourage her from using them, but said he wasn’t convinced of their effectiveness. Other doctors are more skeptical.

     “I don’t personally recommend or use them,” said Helen Analo, an oncologist with Allegheny Health Network. “It’s uncomfortable, it’s not that effective, and most women regain their hair anyway after chemotherapy.”

    Dr. Analo said that she has concerns about the possibility that the caps will create a “cancer sanctuary” in the scalp because the chemotherapy drugs are reduced there, citing two case reports of patients who have used scalp cooling contracting cancer in the scalp years after treatment…”_________________________________________________

    5.  https://www.youtube.com/watch?v=h7suFbuGEik

     Interesting VIDEO article - A lady doctor talking about her own cancer and hair loss.  FDA has approved the DIGNIcap but you better have a lot of money! Published on Nov 16, 2016

          “Hair loss is one of the most despised side effects of chemotherapy, and now breast cancer patients are getting a new way to try to save their locks.

          The Food and Drug Administration said Tuesday it would allow marketing of the DigniCap, a cooling system that chills patients' scalps to reduce the hair loss that is so common during breast cancer treatment.

          Scalp cooling is an idea that's been around for decades. The near-freezing temperatures are supposed to make it harder for cancer-fighting drugs to reach and harm hair follicles by temporarily reducing blood flow and cell metabolism in the scalp.
    Several versions of cold caps are sold around the world. In the U.S., breast cancer patients sometimes bring collections of gel-filled caps to chemo sessions in ice chests, or store them in hospital-provided freezers, so that when one cap thaws they can don another.

          But the DigniCap, made by Sweden's Dignitana AB, is the first version officially cleared by the FDA. The company will lease the device to cancer centers to use as their patients come in for chemotherapy.

          How it works: A half-hour before starting a chemo session, patients strap on a tight-fitting cap that's connected to the cooling machine. It gradually chills the scalp, being careful to stay above freezing, until it's numb as the chemo infusion begins. Patients stay hooked to the cooling system during the treatment, and for about an hour and a half later as blood levels of the cancer-fighting drugs drop.

          Rugo and oncologists at four other medical centers studied the DigniCap system in 122 women undergoing standard chemo regimens for early-stage breast cancer. More than two-thirds of the treated women kept more than half their hair.

          The most common side effects of the DigniCap treatment were cold-induced headaches and neck and shoulder discomfort, chills and pain associated with wearing the cooling cap for an extended period, the FDA said.

          Some doctors had long wondered if the cold could prevent chemotherapy from reaching any stray cancer cells lurking in the scalp. The FDA said the risk of that happening "is extremely rare."

          The cost is still being finalized but patients would be charged a fee for each DigniCap use. Depending on how many rounds of chemo a woman undergoes, the total cost could range from $1,500 to $3,000, said Dignitana chief operating officer Bill Cronin.

            The company is negotiating with insurance companies for coverage.

     ____________________End of references_______________

     

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited January 2017 #13
    So far no nausea.

    Day 3 after chemo and I've had no nausea and no need to take the meds. The bone pain has started. It's a nagging feeling in my spine, knees, and hips. Flushed face for a day and some wooziness throughout the day. I do get sleepy though. That's a nice change. I didn't have that with cisplatin and radiation. I don't think I slept much at all during that phase of treatment.

    Icing the hands was a little too easy. I fell asleep for a bit with everything on ice. Took it a little too far and my hands were swollen the next day. I did try to keep cold things in my mouth. Ice-cream. Ice chips. Etc. Wasn't exactly as faithful to the regimen but I did try. No loss/change in taste and smells don't make me feel like puking like the Cisplatin did. 

    I went for a very short jog today. Probably not wise but I had to use this steroids energy for something. And now I wait for the hair to fall. I'm getting a little more comfortable about the idea. And if my hair does resume it's normal growth, as short as I normally keep my hair, I'll probably look like my pre-chemo self by late summer.

    Here's to hoping that I will fair well for the rest of my infusions. 1 down. 3 to go.

  • bluesmama
    bluesmama Member Posts: 125 Member

    It's Loretta~1st dose sometimes easiest~crappy can B cumulative!

     Hello it’s Loretta again~

    Just enjoy the good nap you had.  The Benadryl worked just the opposite on me.  That was smart to keep your hands and feet as cold as you could stand it.

    With my Benadryl preparation, at my very first session.  My speech got slurred and I was drowsy for perhaps 15 minutes.    My tongue lagged behind what I was trying to say, and thoughts of things that I wanted to say zipped across my mind in a flash before I could get them out.  Then I forgot what I was saying.  After the initial beginning of the dose, I had “restless legs” for an hour before it wore off and that was the worst part of the treatment for me. Now the nurse has reduced the amount of Benadryl and it cured the “restless legs” problem, but it still didn’t make me go to sleep.

    (I skipped over the first part of my bad experience in which my spine started jerking from the neck down to my pelvis, I almost passed out, and that happened in the first 2 minutes of the first treatment.  I actually thought I was dying, and my husband said, I turned beet red all over.  The nurses right outside the door, quickly shut off the flow and put something in to “revive” me.  The jerking was akin to a “road worker operating a jack hammer breaking up concrete!”  That was scary and a very long day.  I was there for at least 9 hours.  They got in the first treatment but not before they did something to control my spine problem.

    Now usually the first dose is the easiest dose.  “Chemo crappy is cumulative.”  Extreme fatigue seems to be a good buddy to all of us.  But there again, each patient will be different.  The good news for me today is that I finished up my 5th of 6 treatments I will have on this go round!  On October 20, my CA-125 count was 325, today it is 24!  So while some new tumors may have cropped up, others have decreased in size or been killed.  That’s good news and I’ll take it and be happy.  Hopefully, you will have the same good results at the completion of your treatments. 

    And I would agree that you should have your “hair party” early.  And I used the expression “shaved” in my other letter to you, but actually I’ve cut my own 3 boys hair from the time they were small, as well as my husband’s hair.  I’ve bought several new pairs of clippers in my lifetime, but they don’t cost any more than any two visits to the barber.  So I just used the longest attachment to the clipper set to take off the bulk of my hair, then I go over it again with the shortest attachment.  And then I used an “electric” razor to remove the short stubble.  My husband does the back part for me.  The first time my hair came back curly for only a short time, and then it straightened out.  Fortunately for you, your hair must grow rapidly, because I only average 4 to 5 inches in a whole year.  It had just grown out enough from the second set of treatments for me to get a permanent.  So I did.  That lasted only about a month before I had a PET scan that showed more cancer.  And that’s why I’m on this 3rd set of treatments.  Something’s working and I’ll settle for that. 

    One more thing about hair—I have nary a hair on my eye lids and I can practically count the hairs on my eyebrows.  I’m taking a light brown eye pencil and drawing a line where they use to be on the part closest to my nose.  Then I “smudge” it with a Q-tip to soften the look.  It’s better than only “half a brow.” I was a “strawberry blonde” in my youth, prior to my hair turning white.  And I don’t mind white, it fits well on my almost 78 year old body.  So my brows and eyelids were never very dark, but I guess in this situation, “Half a brow is better than none.”  But that’s something we women can work around.  It’s the things going on inside that we can’t control.  

    So try not to get too far ahead of yourself.  You may weather the storm quite well.  By the way, it’s your gums that need messaging with a soft toothbrush.  When the chemo damages the gums that’s when the teeth will loosen.  And that’s why it’s smart to keep something cold in your mouth when you can, but you said that was a problem.  But for those who don’t have a problem, and are in the process of chemo treatments, the cold will keep the chemo from circulating around them because the blood vessels constrict when colder, and serve as somewhat of an icepack to that area, as much as if they had their normal blood supply.

    Wishing you many good days and few side effects.

    Love Loretta

    ______________________________________________________

     P.S.  Here are a few links regarding “cold” relative to chemo treatments for mouth and some experimental trials relative to hair loss

     Chemotherapy and Your Mouth

      1. How Does Chemotherapy Affect the Mouth?
      2. What Mouth Problems Does Chemotherapy Cause?
      3. Why Should I See a Dentist?
      4. What Will the Dentist and Dental Hygienist Do?​
      5. What Can I Do To Keep My Mouth Healthy?
      6. Do Children Get Mouth Problems Too?

     How Does Chemotherapy Affect the Mouth?

     Chemotherapy is the use of drugs to treat cancer. These drugs kill cancer cells, but they may also harm normal cells, including cells in the mouth. Side effects include problems with your teeth and gums; the soft, moist lining of your mouth; and the glands that make saliva (spit).

     It’s important to know that side effects in the mouth can be serious.

    •  The side effects can hurt and make it hard to eat, talk, and swallow.
    • You are more likely to get an infection, which can be dangerous when you are receiving cancer treatment.

    • If the side effects are bad, you may not be able to keep up with your cancer treatment. Your doctor may need to cut back on your cancer treatment or may even stop it….

      What Mouth Problems Does Chemotherapy Cause?

      You may have certain side effects in your mouth from chemotherapy. Another person may have different problems. The problems depend on the chemotherapy drugs and how your body reacts to them. You may have these problems only during treatment or for a short time after treatment ends.

    •  Painful mouth and gums......Dry mouth......Burning, peeling, or swelling tongue......Infection......·         Change in taste…”
    • _________________________________________________________________________

     2.  http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486

    3.  http://chemocare.com/chemotherapy/side-effects/hair-loss-and-chemotherapy.aspx

    4.  http://www.post-gazette.com/news/health/2015/07/28/Ice-caps-can-prevent-hair-loss-during-chemo/stories/201507280007

     “…When Ms. Nyalka brought up the caps with her doctor, he didn’t discourage her from using them, but said he wasn’t convinced of their effectiveness. Other doctors are more skeptical.

     “I don’t personally recommend or use them,” said Helen Analo, an oncologist with Allegheny Health Network. “It’s uncomfortable, it’s not that effective, and most women regain their hair anyway after chemotherapy.”

    Dr. Analo said that she has concerns about the possibility that the caps will create a “cancer sanctuary” in the scalp because the chemotherapy drugs are reduced there, citing two case reports of patients who have used scalp cooling contracting cancer in the scalp years after treatment…”_________________________________________________

    5.  https://www.youtube.com/watch?v=h7suFbuGEik

     Interesting VIDEO article - A lady doctor talking about her own cancer and hair loss.  FDA has approved the DIGNIcap but you better have a lot of money! Published on Nov 16, 2016

          “Hair loss is one of the most despised side effects of chemotherapy, and now breast cancer patients are getting a new way to try to save their locks.

          The Food and Drug Administration said Tuesday it would allow marketing of the DigniCap, a cooling system that chills patients' scalps to reduce the hair loss that is so common during breast cancer treatment.

          Scalp cooling is an idea that's been around for decades. The near-freezing temperatures are supposed to make it harder for cancer-fighting drugs to reach and harm hair follicles by temporarily reducing blood flow and cell metabolism in the scalp.
    Several versions of cold caps are sold around the world. In the U.S., breast cancer patients sometimes bring collections of gel-filled caps to chemo sessions in ice chests, or store them in hospital-provided freezers, so that when one cap thaws they can don another.

          But the DigniCap, made by Sweden's Dignitana AB, is the first version officially cleared by the FDA. The company will lease the device to cancer centers to use as their patients come in for chemotherapy.

          How it works: A half-hour before starting a chemo session, patients strap on a tight-fitting cap that's connected to the cooling machine. It gradually chills the scalp, being careful to stay above freezing, until it's numb as the chemo infusion begins. Patients stay hooked to the cooling system during the treatment, and for about an hour and a half later as blood levels of the cancer-fighting drugs drop.

          Rugo and oncologists at four other medical centers studied the DigniCap system in 122 women undergoing standard chemo regimens for early-stage breast cancer. More than two-thirds of the treated women kept more than half their hair.

          The most common side effects of the DigniCap treatment were cold-induced headaches and neck and shoulder discomfort, chills and pain associated with wearing the cooling cap for an extended period, the FDA said.

          Some doctors had long wondered if the cold could prevent chemotherapy from reaching any stray cancer cells lurking in the scalp. The FDA said the risk of that happening "is extremely rare."

          The cost is still being finalized but patients would be charged a fee for each DigniCap use. Depending on how many rounds of chemo a woman undergoes, the total cost could range from $1,500 to $3,000, said Dignitana chief operating officer Bill Cronin.

            The company is negotiating with insurance companies for coverage.

     ____________________End of references_______________

     

    Excellent results Loretta!

    Glad your CA125 has taken a nice dip. :)

  • Soup52
    Soup52 Member Posts: 908 Member
    edited January 2017 #15
    Loretta, that is wonderful

    Loretta, that is wonderful that your ca125 is going down! Cheers!!

  • azgrandma
    azgrandma Member Posts: 609 Member
    edited February 2017 #16
    It does get better

    My gums have receeded so much since chemo, do not think it will get any better.

    I had 4 rounds of carbo taxol and it was rough. Was suppose to get  6 but counts went too low to getit has been 7 years since my last chemo and I am doing fine now except for the gums

  • bluesmama
    bluesmama Member Posts: 125 Member
    No hair loss yet.

    Day 14 and no hair loss yet. My scalp does get achy in random spots and it started to itch too in random spots. I'm guessing it's coming soon. Interestingly, my pubic hair has nearly all fallen out. I didn't have much left after radiation but was shocked to see this happening before my the hair on my head. 

  • saritab
    saritab Member Posts: 4
    Hair loss

    when I was going through my treatment it took until the 3 rd, for my hair to fall out, I am 7 yrs survivor and was told yesterday It has returned, so back for surgery and taxol/carbo.

  • lilyk5459
    lilyk5459 Member Posts: 2
    edited February 2017 #19

    "Bluesmama"~U probably won't B nearly as ill w/new chemo regimen

     Good afternoon “BluesMama”

     Hope you’re not too blue today, even though neither of us are excited to be on a chemo regimen.  My regimen seems to be the same as “Soup’s”.  This is the third series of Chemotherapy treatments consisting of Carboplatin & Paclitaxel (Taxol) since my diagnosis in November of 2012.  The regimen consists of 6 treatments, each one being at 3-week intervals.  Usually I have a CT scan after the 3rd treatment to check its effectiveness. 

     Each time this regimen has “quieted the spread” for a while.  That period of time when the cancer is not running rampant seems to last for about a year.  So I consider that a good period of progression free survival (PFS) which is the most a Stage IV Peritoneal Carcinomatosis/Ovarian Cancer Stage IV patient can hope for. 

     Like Soup said, she took her anti-nausea pills on a regular basis.  Now there are a multitude of symptoms that one can have when taking either of these drugs, so although I’ve probably given you the links before, I will list them again.  No two people will experience the same side effects.  I’ve never had a nausea problem except when I took one injection with Neupogen.  I was so sick for two days that I couldn’t think of eating.  So I asked my doc to never give me that again.  And there as well, some people have no ill effects with Neupogen, but I did.  After each of my treatments, I return the following day for a “Neulasta” injection and also hydration.  I’ve never had a low WBC as a result of this regimen.  Also I wrote a letter to “Brian” once in things I had found helpful. I will put that link here as well.

     Now I’ve found a product known as “BIOTENE”.  (Prices will vary greatly depending on where you buy it.  I get mine from COSTCO for the large bottle for $8.49.) Or you can mix up your own formula with water and baking soda as I outlined in my tips to Brian.  Biotene is an oral mouth rinse that my dentist recommended.  I use it frequently during the day.  I brush my teeth after meals and use a SOFT toothbrush to massage my gums.  That’s important too.  My oncologist advised me to keep something in my mouth that was in the “cold category” because the colder, the better.  That keeps the chemo was circulating as well where it doesn’t need to go in the first place.  It can cause damage to the gums, and cause the teeth to loosen in time.  My husband had firsthand experience with that as a result of his Carboplatin-5FU regimen.  And in talking with others, he isn’t the first one.  Ultimately implants were necessary, so don’t want to scare you, just try to eat cold things at least for the first 24 hrs. after treatment.

     And no doubt the TAXOL has probably resulted in hair loss right away.  Mine started the second week.  And so the third time around, I didn’t bother to go to the beauty shop, I just shaved it off myself.  Now try not to worry about things that MAY happen—we’ve got enough present-day problems.

     I would much prefer the latter treatment.  Sounds like our treatments are identical, except my series last for 6 weeks instead of 4.  Hydration is very important.  You may find that you have an extremely dry mouth with this treatment, and it’s important that your mouth be moist at all times. 

     And I would ask for the white blood count “booster” injection, either of Neulasta or Neupogen.  I started having intense pain a couple of hours after I got that first shot of Neupogen, and had to go to the ER to get an injection for severe pain up and down my spine.  I never had that after switching to Neulasta.  And no I don’t own any stock in Neulasta!

     Hopefully, you will see a big reduction in the CA-125 marker during this time of treatment, and I would wish for you a long period of time when the cancer is “pooped out” instead of you!   It’s a New Year, and I wish a long period of progression free survival for all of us!

     Love Loretta

     ___________________________________________________________________



     “…The following side effects are common (occurring in greater than 30%) for patients taking Carboplatin:

     Low blood counts (including red blood cells, white blood cells and platelets)

     Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

     Onset: None reported
    Nadir: 21 days
    Recovery: 28 days

     _________________________________________________

     2.  http://chemocare.com/chemotherapy/side-effects/taste-changes.aspx

     Helpful things to counteract side effects

    _________________________________________________

    3.   http://www.chemocare.com/chemotherapy/drug-info/Taxol.aspx

     “…The following Taxol side effects are common (occurring in greater than 30%) for patients taking Taxol:

    • Low blood counts.  Your white and red blood cells and platelets may temporarily decrease.  This can put you at increased risk for infection, anemia and/or bleeding.
    • Hair loss
    • Arthralgias and myalgias, pain in the joints and muscles. Usually temporary occurring 2 to 3 days after Taxol, and resolve within a few days.  
    • Peripheral neuropathy (numbness and tingling of the hands and feet)
    • Nausea and vomiting (usually mild)
    • Diarrhea
    • Mouth sores
    • Hypersensitivity reaction - fever, facial flushing, chills, shortness of breath, or hives after Taxol is given.  The majority of these reactions occur within the first 10 minutes of an infusion.  Notify your healthcare provider immediately (premedication regimen has significantly decreased the incidence of this reaction)…”

     ______________________________________________

     4.  http://chemocare.com/contact.aspx

     “…Have questions about chemotherapy? - Call the Cancer Answer Line at Cleveland Clinic – 1-844-268-3901…”

     Note to BluesMama – I’ve never called this line but it seems to be open to anyone who has a question, and I certainly don’t think it should it cost anything.  I’m putting it here based on the excellent info they provide on the chemocare.com sites.

     ________________________________________________________

      5.  http://csn.cancer.org/node/301646

     “BRIAN from the North~Things I learned during my chemo treatments~Hope it will B helpful 2 U & Mom~Wishing her all the best!”__________________________________________________

      ________________End of references______________

      

    Just completed 5/6 Paclitaxol & Carboplatin

    Nothing like having poison pumped into your veins. I hurt so bad everywhere i had soft tissue. It was horrible the day I lost my hair and I had my husband shave my head. It fell out exactly 2 weeks after my first treatment. I work a corporate job so I was mortified. I did not have the luxury of sitting around and resting. My company did not pay for a medical leave and I am the main source of income for our family. I am having a lot of trouble dealing with what I look like when I see myself in the mirror as well as anger over the whole situation.

    Right before I found out I had both uterine and ovarian cancer, my life had finally evolved into the perfect life. Cancer was a rude awakening for me. I went to a regualr check up and had endometrial cells present. I was told that a simple hysterectomy would fix everything an I would go on. During the surgery the pathology said different. It said I had 2 independent clear cell tumors, one in my uterus and the other in my fallopian tub. I was then told I would need both radiation and chemo. I was shocked how it could go from an ordinary hysterectomy to now I have Lynch Syndrome and now all my kids and siblings must be tested. I am not a happy camper; however, God placed 2 women in front of me who have been through the same exact thing; but were stage 4 and they are still alive. I just want to live and have my life back.

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    lilyk5459 said:

    Just completed 5/6 Paclitaxol & Carboplatin

    Nothing like having poison pumped into your veins. I hurt so bad everywhere i had soft tissue. It was horrible the day I lost my hair and I had my husband shave my head. It fell out exactly 2 weeks after my first treatment. I work a corporate job so I was mortified. I did not have the luxury of sitting around and resting. My company did not pay for a medical leave and I am the main source of income for our family. I am having a lot of trouble dealing with what I look like when I see myself in the mirror as well as anger over the whole situation.

    Right before I found out I had both uterine and ovarian cancer, my life had finally evolved into the perfect life. Cancer was a rude awakening for me. I went to a regualr check up and had endometrial cells present. I was told that a simple hysterectomy would fix everything an I would go on. During the surgery the pathology said different. It said I had 2 independent clear cell tumors, one in my uterus and the other in my fallopian tub. I was then told I would need both radiation and chemo. I was shocked how it could go from an ordinary hysterectomy to now I have Lynch Syndrome and now all my kids and siblings must be tested. I am not a happy camper; however, God placed 2 women in front of me who have been through the same exact thing; but were stage 4 and they are still alive. I just want to live and have my life back.

    Lily~I'm praying U will have many good days & years ahead!

    Dear Lily:

    When I read your letter I identified with your shock.  Moreover, no doubt each one of us who went to the doctor and came home with a cancer wondered how on earth could this happen.  And if we’re truthful, most of us experienced a myriad of emotions.  And who on earth do we tell first?  How are we going to tell our children, and in my case grandchildren as well.  You’re the one hurting tonight, so I won’t go into detail about my own Stage IV diagnoses, only to say that I’m still alive and entering my 5th year of survival.  It’s not been easy, but I’m thankful for the good periods of time I’ve had in between treatments.  I will tell you that I asked “Dr. Google” what is Lynch syndrome?  I was already familiar with Ovarian cancer.  What can I say Lily?  No words can make you feel better.  I just moaned and groaned when I read what you dealing with.  I just hope you’re in the care of some excellent oncologists.  You’re a real trooper to suffer through all those Carbo/Taxol treatments and still manage to go to work. 

                No medical leave is a bummer.  From what I’ve read, you have a hereditary gene.  So let’s just say, you had no “say so” in how you came to be diagnosed with this cancer.  I wish I had some magic words and pixie dust to make it all go away.  I’m glad that you’ve met a couple of ladies with your same diagnosis and are farther along down this rocky road.  It’s always good to find someone else that is still alive after a Stage IV diagnosis.  I met another lady at the oncology lab that was in her 8th year of survival, and that was an encouragement.  It gave me hope that I could also make it that long.  Of course, we know they weren’t all carefree years, but what choice do we have?  Sometimes we will just feel “yucky”.  None of us are always “happy campers.”  We can give up right away, or we can take a second breath, and get the very best treatment we can, and ask God to give us some more time.  I look around and see others that I wouldn’t want to trade places with.  So while I’m terminal, I’m still alive and thankful for the things I still have “left”.  I’ve been given more years than I ever dreamed possible.  And I hope that it will be the same for you.   It hurts to read your letter. 

                And as for your hair loss, that’s always discouraging.  But it will grow back after you get off this chemo regimen.  I’m having my 6th treatment of the same drugs tomorrow.  So I’ve lost my hair 3 different times.  And the first was the most traumatic.  My hair started to turn loose by the second week, and then just came out in big bunches when I brushed it.  I don’t have any eyelashes at all.  I’ve often said, I’ve given the Lord the day off because He doesn’t have to bother to count the hairs on my head.  And each day that I look in the mirror, I can count my own eyebrows.  So I take an eyebrow pencil and lightly draw in a line where the brow used to be.  But I tell myself, I just hope the tumors are dying on the inside in proportion to the hair I’m losing on the outside.  I hope the same for you.

    This will be my third round of treatments, the first series being in the Spring of 2013.  But before I started my first round of treatments, I did go down to the local wig shoppe and try on some wigs that I might want to wear for some special occasion.  I had already read that hair loss was usually a side effect of these drugs, especially Taxol.  At home, I go bald.  And I’ve gotten good at going “past” the mirror without looking at my bald head.  When my head gets cold, I put on a knit cap.  There are some nice ladies at one of our local churches that makes some pretty knit hats and donates them to different cancer clinics in the area.

    I did buy some “turbans” at the Shoppe and then I ordered some from some wig catalogs on the web.  So below my name are some links that might give you an idea of what I’m talking about.  And I will put one link here about “Lynch Syndrome.”  You probably already know all you want to know, but there may be others who read this letter, and like me, had no idea of what Lynch syndrome was.  And I’m sorry to know that you have been given this diagnosis. 

                I wish for you a good report and long periods of “progression free survival” so that you can experience some joy along with the times of sorrow that we all endure.  And like I’ve shared with others, remember, “Life isn’t about waiting for the storm to pass.  It’s about learning how to dance in the rain.” 

    Love and prayers,

    Loretta – Peritoneal Carcinomatosis/Ovarian Cancer Stage IV (First diagnosed November of 2012).

    ___________________________________________________________________

    1.             http://www.cancer.net/cancer-types/lynch-syndrome

      2.  https://www.paulayoung.com/category/hairpieces/hairpieces+and+clip-ons.do 

    3.  http://www.ebay.com/itm/1pcs-Hair-Clip-in-Bangs-Extension-False-Hair-Piece-Clip-on-Front-Neat-Bang-/262381354030?var=&hash=item3d1725bc2e:m:mAYWmSvRy6rqc_X1dtiSRXw

    Lily – When you’re bald there’s nothing to clip on to, but when I purchased mine some years ago, they came with a wide Velcro strip at the top of the bangs.  It also had a piece of elastic that could wrap all around my head, but I found that the Velcro “stuck” to the inside of the turbans real well.  So you could sew a piece of wide Velcro across the top, and with a turban and these false bangs, it looks like you have hair.  I’ve pulled my turban off more than once to show the ladies that I am bald.  The ladies in the lab that have been drawing my blood for so many years now said they never knew it wasn’t my real hair.  So if you key in “wigs and bangs” on the web, you just might find something that you like that is the color of your hair.  The link above is just for informational purposes.  I don’t have reason to order anymore because I bought two sets of bangs when I bought them.  I paid about $15 a piece.  No they’re not human hair bangs.  Human hair is very expensive.  However, the place where I ordered from doesn’t carry them anymore. 

    4. http://www.qvc.com/Hairdo-Effortless-Clip-In-Bangs.product.A92049.html  

    5.  https://thewigcompany.com/hairpieces/vc/hairpieces/

    This is where I ordered my turbans and bangs and wigs from.  But sad to say, they no longer have the bangs that I bought.

    6.   http://us.wow.com/video?q=Clip+on+Bangs+for+Thin+Hair&s_it=video-ans&sfVid=true&videoId=5253524BB5AA6B65280A5253524BB5AA6B65280A&s_chn=209&s_pt=aolsem&v_t=aolsem

    If I ordered some of these bangs, I would first sew a wide piece of Velcro onto the top of the bang itself since we have nothing to clip it to.  I would then cut off the excess in the back side, and trim the front to suit my face.  Then the Velcro adheres very easily to the cloth turban.  But you could also put a piece of Velcro inside the top of the turban and then the Velcro strip on the bangs would adhere securely to that piece.  I would do this with a needle and thread and tack it to the inside of the turban itself.  I sew so I have an idea of what it would look like.  Some of my turbans are knit, some are terry-cloth like and the Velcro sticks to it quite nicely. 

  • bluesmama
    bluesmama Member Posts: 125 Member
    edited February 2017 #21
    So sorry to hear about your recurrence...

    This is a recurrence for me too but my original cancer only required surgery.

    And... Chemo #2 is done but the hair is thinning noticeably. I've got two small bald spots by my temples. I can't walk out without a hat for sure but I still have most of my hair and I'm absolutely sure most of my follicles are dead and they're just strands sitting in sand waiting for the breeze to blow them away. The hair loss pattern is pretty amusing... or at least I'm trying to find the humor in it all... 

    Having said that while chemo #1 was a breeze, chemo #2 knocked me off my feet. My doctor was surprised. I'd say it was almost as bad as the cisplatin and radiation and even included a lovely night diarrhea. It's been a week and I still feel queezy and walking up a flight of stairs is tiring.

    But I survived and I'm sure you all are as well. :)