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  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    Hair and Timeline

    I did shave my head when my hair starting falling out. It took me several days to talk myself into it. But, hair falling all over the place was driving me nuts. I'm not going to lie - it is quite shocking to see yourself bald. But, in the overall scheme of things, it is a small price to pay to give yourself a great chance to live. It is temporary. My hair is about 1.5 inches long now. I'll tell you, losing your eyebrows and eyelashes is probably going to be harder. At least it was for me.

    Your timeline sounds about right. I was told they liked to start chemo 3 - 4 weeks from the surgery. Preferably 3 weeks.

    Good luck and come back with other questions. I hope you get the best possible news on your path report.

    Love and Hugs,

    Cindi

  • Editgrl
    Editgrl Member Posts: 903 Member
    More hair stuff

    Mine began coming out just after my second chemo.  Your scalp will probably begin to hurt, kind of that feeling you get when you're pony tail has been pulled too tight for too long.  I did not completely shave it off, but left 1/4-1/2". I had already gone with a friend to purchase a wig.  We made an afternoon of it, since she wanted to get a wig for non-cancer reasons.  We spent an hour and half trying on various styles, colors, laughing a lot and then went out to lunch.  The place I went to is out in Roseville and they work with a lot of cancer patients.  It really was quite a nice and empowering experience, taking a bit of control back.

    I did not wear the wig all the time.  Pre-tied scarves, do-rags, wraps all came in handy.  I had a lot of scarves that I had never worn, and finally I had a use for them. Did take a while to learn how to wrap them so I didn't look like a bag lady. And at times I did go "commando."

    My head hair never completely disappeared, however the rest of my body hair did, and I mean all of it.  Since you're going have chemo during the summer, this could be a benefit:  no shaving of the legs!!!  Also be prepared for losing eyelashes and brows.  For me, that took a lot longer to happen and they really didn't disappear until I was almost finished with chemo.

    Just remembe that it's temporary.  Mine began growing back 5 weeks after I finished chemo, and I went to the stylist for the first time last week, 5 months later.  My profile pic was taken 4 months after chemo. It may come back a different color and/or texture.  My color is the same, but it has come back as much finer hair but it's much thicker, too.

    As far as knowing your pathology...  my follow-up with my gyn/onc was about 3 weeks after surgery and I chose to wait until then to get the results.  I just wanted to concentrate on healing from surgery.  It worked for me, but I know some women who want to know as soon as possible.

    Sending healing energy for a quick recovery, but try not to overdo.  I know that's hard when you feel good, but I made a point of making myself have some quiet time every afternoon whether I felt like it or not.  Your body will thank you.

    Chris

  • debrajo
    debrajo Member Posts: 1,095 Member
    edited May 2016 #44
    Charissa said:

    Great advice, sweet Debra.

    Great advice, sweet Debra. Thank you. And, WOW, NED since 2009? Thank you, from the bottom of my heart, for remaining committed to this group. Us newcomers to this group need you pioneer women to lead us, comfort us, educate us, support us, and understand us. What a blessing.

    I added shark cartlidge to my supplements, I already take Curcumin (supposedly just as good as turmeric), along with many other supplements. I'd be curious to see, though, some of the other supplements that are working for women with our same diagnosis. Do I just do a search on here? I started a pretty restrictive Cancer Prevention Diet from a dietician at my holistic doctors office. Not sure there is much more I can do before chemo begins.

    It is only through this group that I have gained hope of possibly beating this. My daughters and hubby are so glad I found all of you. I'm now talking like a warrior woman who is battling the enemy. And, you're right - we are not promised tomorrow. I could leave my driveway and be hit and killed at any time. That has been the BIGGEST lesson learned so far - "Live for Today!"  We need to make the most of each day, recognizing all the blessings and not let the enemy steal our joy. 

    And, not to store up for tomorrow. I have two daughters I home school - ages 14 & 16. I started gathering books and crafts that I wanted to do when they went off to college. Then, I get this diagnosis. Qucikly, it brought everything back into perspective. Funny, how everything was a need until this diagnosis.

    Thank you, sweet Debra. Hugs and love to you.

    Doing well!

    I think you are doing wonderfully well with this whole cancer thing!  You should have seen me when I first got here...I was one big, hot mess!  These ladies are wonderfl(and the gentlemen also!)  You  will be riding very soon and making plans for the future with your family.  This cancer stuff is just a speed bump in life!  Don't fret the hair loss...if the hair is going, so are the cancer cells!  In the words of a great friend of ours on the ovarian board,"cancer gave me the best "Brazillian"ever! LOL!

    I'm glad you are going with both medical and diet/supplement approch.  I take the Cucurum(which is concentrate Tumeric) 2000 units a day along with the Biopene(bet I spelled that wrong!) which is a black pepper supplement that helps the body absorb the Cucurum.  If you havent read all the post, go back and read " Tethys41"  she has been doing a lot of holistic and right living.  Your doctor will, I'm sure, get you all fixed up.  Also, the metformin.  I've taken this diabetic drug for years and now the studies are showing that it helps in this was by not "feeding the Beast"  You do not have to be diabetic now days to get this for cancer.

    Yes, live for today(I personaly think I will bite the dust from Houston traffic on the way home from a perfect check up! God forbid!), but make small plans for the future.  I have a wedding , my fourth son, Oct. 29th...it is the little things!  Best, Debrajo

    P.S. I'm one of the nite owls, if you need anything, I usually check the boards late at night!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Charissa said:

    Thank you, Brissance. Because

    Thank you, Brissance. Because of it's aggressiveness and coming from a smaller town, my OBGyn knew it was critical to have it removed ASAP. Plus, I feel she felt somewhat responsible for letting me take the month of April off with me thinking it was a polyp.  So, when this particular doctor she recommended said he could see me and do surgery within 7 days, I jumped all over it, doing little research, just wanting it removed ASAP. So, as far as a treatment team, I'm not sure that I have that. I'm seeing a wonderful oncologist in Sacramento.  He has a nurse working alongside him and a young gal who schedules his appointments and surgeries.  He did the Davinci method hysterectomy and being a week and a half into it, I feel as though there are no complications.  When you say a "Good Team" working for me, what does that consist of?

    Will you be receiving chemotherapy?  My oncologist said because of the type I have, he will start chemotherapy in 4 weeks and radiation will be determined when the lab results comes back.

    I feel so blessed to have found this group. I have read through some of the various posts and it seems like they are great friends and have come to understand each person's personality well through this network. I, too, will add you to my prayer list. Thank you, for your encouragement and warm welcome.

    Sacramento?

    Charissa - I'm just outside of Sacramento (in Woodland).  I had my treatment at UC Davis in 2010.  I am now a volunteer peer navigator and know we have a uterine cancer survivor peer navigator who had the works in terms of treatment.  I had only surgery because my cancer was early stage, low grade.   I also had breast cancer and mostly navigate breast cancer patients.   PM me if you want more information about the program and/or just want to have lunch!

    I also want to be sure you are seeing a gynecologic oncologist in Sacramento.  I know there are several associated with Sutter and UC Davis, but not sure about the Mercy or Kaiser systems.  I think all would agree that this is very important.

     

     

    Suzanne

  • Red Corvette
    Red Corvette Member Posts: 114 Member
    Hair

    My wife and I did icing of head, hands, and feet during chemo treatments and my wife has had no nueropathy and no baldness. After 4 chemo treatments my wife has lost hair, probably about 60 percent but no bald patches and no emotional problems because of total hair loss.  If your are interested here's the info link on icing to save your hair during chemotherapy.

    http://www.rapunzelproject.org/coldcaps.aspx

    For more info on preventing nueropathy by icing just google icing during chemotherapy.

    Red Corvette

     

  • Charissa
    Charissa Member Posts: 129 Member
    edited May 2016 #47
    Wow, you gals are AWESOME!!!

    Wow, you gals are AWESOME!!! Thank you, so much for the quick reply.  I would love to know the name of the place in Roseville, since I do live relatively close to there.  And, I love the humor. That's what I've needed most these past two days. Coming off the meds and not having my bio-identical hormones has been a little bit of a transition.  I'm hoping it doesn't get any worse then this? Any insight in this area is welcomed too.  My hot-flashes seem to be comparable to when I was on the hormones. I'm just a little tired and melancholy.

    My current question would be, "After the DaVinci hysterectomy, is the bladder hyper-sensitive?" Literally, I feel like every gas bubble traveling through my colon, vibrates my bladder.  Other then that, it never bothers me throughout the day. But, when I do use the restroom, it feels very sensitive. And, when having a bowel movement, my bladder feels rather achy. I'm trying to understand the new anatomy of my body - thinking maybe those two are now side-by-side. Tomorrow will be 13 days since surgery. Knowing the cancer could have moved to my bladder and not having the pathology back, my mind gets the worse of me. I never see blood in my urine, but sometimes upon wiping there is a tinge of pink.  However, I am putting beets (some days red and sometimes yellow) in my morning juice. My lower back also gets really achy toward the end of the evening.  Which I think is expected, since I have been off my pain pills for both today and yesterday. I just took an Ibuprofen, so hoping that helps eliminate some of the tenderness.

    Thank you, so much, for being here for me and for having NO questions off boundaries. It is so nice to be able to come to a group of lovely women, who are genuinely humble and simply want to walk alongside others on this journey. Feeling blessed! Love and hugs to each of you. Wish I was ahead of the game, so I could answer your questions and encouarge you forward. You guys are my inspiration.

  • Editgrl
    Editgrl Member Posts: 903 Member
    Bladder stuff and wigs

    I did have some achiness and just a kind of weird feeling in my bladder when I urinated for a few weeks after surgery especially near the end of the flow.  I remember asking my gyn/onc about it at my follow-up and he said it was normal.  Are you still on stool softeners?  I stayed on them for about a month after surgery as they did help to "soften" the whole elimination process.  

    If you do decide to go the wig route, the place in Roseville is called Wigs R You.  They do give discounts to cancer patients.  And I forgot to mention that the American Cancer Society in Sacramento has free wigs available, so you might want to check them out first.  

    Try not to let your mind go to those dark places.  That slight tinge is probably normal...those darn beets!  I get that too.  

    Hope the ibuprofen does the job and you can sleep well tonight.

  • Charissa
    Charissa Member Posts: 129 Member
    Editgrl said:

    Bladder stuff and wigs

    I did have some achiness and just a kind of weird feeling in my bladder when I urinated for a few weeks after surgery especially near the end of the flow.  I remember asking my gyn/onc about it at my follow-up and he said it was normal.  Are you still on stool softeners?  I stayed on them for about a month after surgery as they did help to "soften" the whole elimination process.  

    If you do decide to go the wig route, the place in Roseville is called Wigs R You.  They do give discounts to cancer patients.  And I forgot to mention that the American Cancer Society in Sacramento has free wigs available, so you might want to check them out first.  

    Try not to let your mind go to those dark places.  That slight tinge is probably normal...those darn beets!  I get that too.  

    Hope the ibuprofen does the job and you can sleep well tonight.

    Thank you, again, for your

    Thank you, again, for your reply. That is when it feels really odd, at the end of the flow. That gives me some assurance that this a normal part of healing and can put my mind at rest until the outcome of my results.

    Your encouraging words mean more to me, then you will ever know.

    Love and hugs!!!

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    Charissa said:

    Thank you, Kim, for your

    Thank you, Kim, for your sweet, encouraging, and honest message. After doing much research over the past two days, I have elected to go with the chemo and radiation treatment, alongside holistic approaches. I'm not sure what that is going to look like, but feel like it is what will work best for me. I started a Cancer Prevention Diet last week. It's pretty restrictive, but doable. It helps my mind remain at ease, that I'm not feeding or fertilzing any part of the "Beast" that may be left behind.

    Did you loose your hair? This is going to be hard for me, as my hair has always been what helps me feel pretty about myself. Do you recommend it be shaved off or just let it fall out on its own? I think if it were to come out in patches, I would panic. This will be a good test for me, but a hard one. Your bandana is really pretty. I've always liked them, but never felt they looked good on me. Wow, now no excuses, huh? I guess I get to stock my wardrobe with a bunch of cute headbands. And, like the nurse reminded me today - it's TEMPORARY!

    Love, hugs, and I will keep you guys updated on my pathology report. Thank you, so much, for being here for me and all the others. Feeling blessed to have a new set of friends.

    Charissa, unfortunately yes,

    Charissa, unfortunately this standard chemo treatment will cause hair loss.  I know it is just hair, but I had a hard time with that.  I tried to hang on to it as long as possible but when I stood outside and gently shook my hair with my fingers and it just drifted off in the breeze - I knew it was time to give in and get my head shaved.  I also didn't want my shower drained getting clogged with hair - definitely one thing I didn't want to deal with!  After the first taxol/carbo chemo they say about 10-14 days after that and I think everything I have read here - all the women report that as well.  Looking at what Cindi wrote further down the page, I agree the eyelashes was tougher than hair.  

    I see some comments on the cool caps - I am glad to see others can share their experiences with that.  

  • janaes
    janaes Member Posts: 799 Member
    new and want support

    Hi,  Im knew to this forum.  Im not so new to cancer.  I had cancer 23 years ago.  I had chemotherapy and radiation.  I am now 43 years old and have been diagnoced with uterine cancer.  stage two.  I m still trying to learn all the termanoligy.  I was diagnoced with cancer about a month and a half ago when i had a biopsy.  Two and a half weeks later i was having a hysterectomy to remove everything.  I am currently recovering from my surgery and waiting to hear back from my radiation Oncolagist.  My gynogoligist and gynocological oncoligist surgine did my surgery.  I am getting mixed messeges about what treatment should be done for me.  The doctors got all the cancer during surgery and it hadnt spread.  Ive heard a lot of things and some of it i am still trying to sort through.  Any ways my gynocalogical oncoligist said that i wouldnt need to do chemotherapy and just do ome internalized radiation.  when i went to see the radiation oncoligist a second time,whom i had seen in the hospistal after surgery and had told me differently, was very respectful but didnt agree with the gynocalogical oncoligist.  He has told me that he will call and talk to my gynocalogical oncoligist along with a bunch more oncoligists to make a decision of what to do.  Im so glad to find this forum.  Im wondering what you guys think of my situation.  Oh by the way, Charrisa im glad you came to this forum.  Its nice to know i am not the only one dealing with this stuff right now

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    Charissa, welcome to our board

     

    The initial diagnosis followed by a hysterectomy was undoubtedly the worse and most frightening part of my cancer journey.  This is how I coped:

    1. I learned as much as I could about my grade 3 (which is always aggressive) adenocarcinoma.  Like many other women here, I received my UPSC diagnoses following the pathology evaluation.  UPSC stands for Uterine Papilliary Serous Carcinoma. Clear Cell is another aggressive type. I gathered all my reports- operative, pathology, Pet and Cat scan reports and obtained two additional opinions.

    2.  I educated myself on the standard of care for women diagnosed with stage IIIa UPSC.  The standard of care is established through research results and is what insurance companies will pay for (I am not talking about a clinical trial here).  Most women with a grade 3 cancer receive chemotherapy and possibly radiation treatment.

    3. At first, I took a loved one or two with me for support and to be additional ears.  I wrote ALL my questions down in duplicate and gave one copy to my gyn oncologist each visit.

    4.  An initial Pet/Cat scan and subsequent Cat scans have revealed no evidence of disease (We refer to that as NED).  I had my surgery over 2.5 years ago and chemo ended in March, 2014.  Have you had a Ca-125 blood test?  This should be done before surgery, during and after treatment.

    5.  I continued to work full time throughout the 6 cycles of Carboplatin and Taxol chemo I received. Practically every woman starts off with this combination.  I missed one day of work following my last chemo (#6) because I was tired.  The worse part of the chemo ws the severe and unrelenting lower back pain I experienced due to the Taxol and the neuropathy in my feet.  My feet are still numb, but quite frankly I would do it again.  It wasn't that bad for me but realize everyone is different.  My gyn onc said that 90% of my treatment was the surgery and of the 10% left over, 9% was the chemo.  Radiation would be 1% according to him.

    Please come back with questions.  You will be surprised to discover that eventually you will work through the horror of having to face one's mortality with a cancer diagnosis and start to thrive again.  I promise!

    Hugs,

    Cathy    

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,353 Member
    janaes, welcome.  I am glad

    janaes, welcome.  I am glad to hear you have a gynecologic oncologist to help you through this.  Since you are recovering from surgery they will be testing everything they removed to get the best plan for you.  You will want to know what GRADE your cancer is. Grade 1 is low and sometimes does not get treatment.  The higher the Grade - the more likely you need some additional treament.  Some uterine cancers are automatically Grade 3 - Uterine Papillary Serous Ccrsinoma (UPSC), considered to be agressive, and almost always receives chemo and/or radiation. 

    STAGE is how far it spread, or grew in to the uterus, lymph, etc...you will want to know the Grade and Stage.  

    Please take care of yourself as you recover from surgery and ask anything you want.  

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    edited May 2016 #54
    Not much with me went

    Not much with me went according to plan.  My gynocologist did a biopsy in August 2015 and told me I had the common endometrial cancer and sent me to a gynocologist/oncologist who said no rush and scheduled me for a DiVinci hysterectomy September 30th with a follow up two weeks later.  He called me the next week and said he wanted to see me ASAP.

    He told me I had UPSC , Stage II, Grade 3, and I should start chemo - Carboplatin and Taxotere right away.  I had a CT scan, had my port installed the next day and chemo the next.  The port site wouldn't heal and could only be used that one time.  I was slightly sick after the first chemo and my white and red blood cell count tanked.  After the second chemo, they gave me Neulasta.  The pain was awful but it got my blood counts up.  In the meantime I was being treated with several rounds of antibiotics for the port site infection.  Nothing was working.  On the day of chemo #3, my blood pressure was 220/180 and they still did the chemo.  My GP thinks I may have had a slight stroke.  My balance was so bad I couldn't walk without a walker or a cane and then only short distances.  I had to use a wheelchair to get my blood tested at the hospital.  I lost control of my bowels and bladder.  My left foot dragged and I had flashing lights in my left eye.  I lost the feeling in both my hands and feet but it was worse on my left side.  And...weirdly, only my left eyebrow and left eyelashes fell out.

    My oncologist finally took out the port but the skin was too degraded to stitch it back together.  I left the hospital in a wheel chair.  I made an appointment with my GP because my blood pressure and blood sugar we're so high and thought that might be why my wound wouldn't heal.  She called my oncologist and said there was no way I could have chemo the next day.  She did all kinds of blood test and called me two days later and said I was in the first stage of liver failure.  I went from taking one medication - synthroid - before cancer to taking 18 pills a day (I'm now down to 12).  

    I finally got a referral to the Wound Care clinic and after five weeks they had to do a chemical cauterization.  Then I did eight weeks of physical therapy to strengthen my left side and get my balance back.  I finished that two weeks ago but every once in awhile still have to use my cane especially on uneven surfaces.  All my fingernails and toenails fell off.  I am also still experiencing terrible diarrhea especially in the morning.  I was hospitalized with esophageal erosion because I thought I was having a heart attack.  I'm still having trouble with that but take medication.

    I asked my oncologist about radiation and he said there was nothing to radiate.  He believes the surgery got all the cancer.  My GP said the oncologist will do everything to kill the cancer even if it also kills me.  She recommended I get no more treatment unless the cancer returns.  I see her next month along with my oncologist's PA.  Hopefully my liver function will have returned to normal.  My blood pressure and blood glucose are normal so hopefully I can get off the BP medication.  I plan to stay on the Metformin since it has shown promise in keeping cancer from spreading.

    I wish you only the best!!  

    Love,

    Eldri

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    janaes said:

    new and want support

    Hi,  Im knew to this forum.  Im not so new to cancer.  I had cancer 23 years ago.  I had chemotherapy and radiation.  I am now 43 years old and have been diagnoced with uterine cancer.  stage two.  I m still trying to learn all the termanoligy.  I was diagnoced with cancer about a month and a half ago when i had a biopsy.  Two and a half weeks later i was having a hysterectomy to remove everything.  I am currently recovering from my surgery and waiting to hear back from my radiation Oncolagist.  My gynogoligist and gynocological oncoligist surgine did my surgery.  I am getting mixed messeges about what treatment should be done for me.  The doctors got all the cancer during surgery and it hadnt spread.  Ive heard a lot of things and some of it i am still trying to sort through.  Any ways my gynocalogical oncoligist said that i wouldnt need to do chemotherapy and just do ome internalized radiation.  when i went to see the radiation oncoligist a second time,whom i had seen in the hospistal after surgery and had told me differently, was very respectful but didnt agree with the gynocalogical oncoligist.  He has told me that he will call and talk to my gynocalogical oncoligist along with a bunch more oncoligists to make a decision of what to do.  Im so glad to find this forum.  Im wondering what you guys think of my situation.  Oh by the way, Charrisa im glad you came to this forum.  Its nice to know i am not the only one dealing with this stuff right now

    Welcome janeas!   What kind

    Welcome janeas!   What kind of cancer did you have before?  This is a really good place with wonderful people who will support you through thick and thin.  I don't think I would have made it without them!

    Love, 

    Eldri

  • Charissa
    Charissa Member Posts: 129 Member
    joyce6611 said:

    Welcome

    Welcome Charissa!  I had a stage 1b endometrial cancer in 2012 and received brachytherapy.  I had recurrence in 10/15.  I am now receiving chemo.  The chemo has been very easy for me.  I have never been sick with it, only a little tired.  Two months ago they put me on Metformin, which is a diabetic drug which clinical studies are showing that it can put cancer into remission.  My lung nodules shrunk to half their size with only one month of Metformin.  Although, I have endometrial stage 4 metastatic to both lungs, I feel wonderful.  I live each day to the fullest and expect to go into remission any day.  Attitude is so important when you are dealing with this.  I am so glad you found our group.  Everyone is so supportive.  I will be praying for you!

    Hugs!

    Joyce

     

    Thank you, Joyce, for the

    Thank you, Joyce, for the encouraging words. Yes, since finding this group, my attitude has definitely changed. It is so critical to have a support group like this when going through this.  I will take note of the medication you're on. My CT scan did show three nodules, with two being 2 cm and antoher being 4 cm. I don't think they look at them as cancer until 8 cm?  My oncologist never brought the nodules on my lungs to my attention. I ended up printing my report out, reading it, then researching what it all truly meant.  I'm hoping it hasn't spread there, but if so, it is comforting to know there is a medication that is working. I, also, started a pretty restrictive diet. I'm hoping the diet either puts the cancer to sleep or gets rid of it all together, along with any additional treatment I receive (chemo, radiation, Vitamin C Injections, etc.). I have decided, after reading these posts, I am going to do both conventional and alternative treatments alongside each other.

    Thank you, again, for being here for me and taking the time to post a reply. I am sincerely grateful to each and everyone of you! Love and hugs!!!

  • Charissa
    Charissa Member Posts: 129 Member
    Editgrl said:

    You will be back in the saddle!

    Charissa, yes, I am back riding again.  My own horse, a 27-year-old Thoroughbred has been having a tough time with some foot/pastern problems during the last year.  In the meantime, I have a couple of horses, a pony and a Belgian/Thoroughbred cross at my disposal.  I am tiny, so the pony works for me and the Belgian/Thoroughbred cross is a workout for my legs!

    It may be a while after surgery before you feel like getting back on your horse, but it will happen.  Even during chemo, there were times I felt well enough to ride.  Especially a Tennessee Walker.  I have ridden a couple and they are so smooth.

    I think in one of your other posts you mentioned Dr. Cowan?  Is that who you are consulting with in S.F.?  He was one of the doctors recommended to me when I was looking for a naturopathic oncologist.

    Hang in there... 

    Chris

     

    Yay, Chris, there is hope

    Yay, Chris, there is hope that I will be riding again! Initially, I was ready to find him a home, thinking I'd never beat this. But, after finding this site, I am hopeful that I will be back upon him soon. 

    Yes, Dr. Cowan is who I am planning on seeing in San Francisco. Does he come with a good reputation or should I seek someone local?  He treated my daughter in the past who had epilipsy - grand mals.  He researched and tried many things and she has been seizure free now for three years.  It started with a Ketogenics diet for two years and now a few daily supplements. Simply amazing. And, he is affordable.  You pay the one time fee, then pay a minimal monthly fee thereafter regardless how much you visit or consult with him.  Of course, the supplements and treatments will be additional.  But, I'm thinking it will still be an affordable route.  Let  me know your "Honest" thoughts.

    Again, thank you, so much for all your time, replies, and wisdom.

  • Charissa
    Charissa Member Posts: 129 Member
    edited May 2016 #58

    Charissa, unfortunately yes,

    Charissa, unfortunately this standard chemo treatment will cause hair loss.  I know it is just hair, but I had a hard time with that.  I tried to hang on to it as long as possible but when I stood outside and gently shook my hair with my fingers and it just drifted off in the breeze - I knew it was time to give in and get my head shaved.  I also didn't want my shower drained getting clogged with hair - definitely one thing I didn't want to deal with!  After the first taxol/carbo chemo they say about 10-14 days after that and I think everything I have read here - all the women report that as well.  Looking at what Cindi wrote further down the page, I agree the eyelashes was tougher than hair.  

    I see some comments on the cool caps - I am glad to see others can share their experiences with that.  

    I love your humor through all

    I love your humor through all this. Someone here also said, "It is less to wash in the shower." Lol! I am embracing this so much better through you guys and education. It is temporary and a good trial for me to go through.  Both cancer and loosing my hair have been my biggest fears. I guess God is trying to work on me. I'm trying to get my two daughters and husband to shave theirs with me, but so far, their not budging.  Again, thank you, for your time and reply. It truly means the world to me. Love and BIG hugs.

  • Charissa
    Charissa Member Posts: 129 Member

    Hair and Timeline

    I did shave my head when my hair starting falling out. It took me several days to talk myself into it. But, hair falling all over the place was driving me nuts. I'm not going to lie - it is quite shocking to see yourself bald. But, in the overall scheme of things, it is a small price to pay to give yourself a great chance to live. It is temporary. My hair is about 1.5 inches long now. I'll tell you, losing your eyebrows and eyelashes is probably going to be harder. At least it was for me.

    Your timeline sounds about right. I was told they liked to start chemo 3 - 4 weeks from the surgery. Preferably 3 weeks.

    Good luck and come back with other questions. I hope you get the best possible news on your path report.

    Love and Hugs,

    Cindi

    Thank you, Cindi, for your

    Thank you, Cindi, for your sweet and encouraging reply.  Yes, loosing my eyebrows and eyelashes will be quite frightening too. But, like mentioned above on another post, if the hair is going then so is the cancer! What a positive way at looking at it.  Makes me want to celebrate the loss of my hair. Lol! You guys have been so good to/for me. I feel so blessed!  I know I will have tons of additional questions, but certainly do not want to wear out my welcome.

  • Charissa
    Charissa Member Posts: 129 Member
    debrajo said:

    Doing well!

    I think you are doing wonderfully well with this whole cancer thing!  You should have seen me when I first got here...I was one big, hot mess!  These ladies are wonderfl(and the gentlemen also!)  You  will be riding very soon and making plans for the future with your family.  This cancer stuff is just a speed bump in life!  Don't fret the hair loss...if the hair is going, so are the cancer cells!  In the words of a great friend of ours on the ovarian board,"cancer gave me the best "Brazillian"ever! LOL!

    I'm glad you are going with both medical and diet/supplement approch.  I take the Cucurum(which is concentrate Tumeric) 2000 units a day along with the Biopene(bet I spelled that wrong!) which is a black pepper supplement that helps the body absorb the Cucurum.  If you havent read all the post, go back and read " Tethys41"  she has been doing a lot of holistic and right living.  Your doctor will, I'm sure, get you all fixed up.  Also, the metformin.  I've taken this diabetic drug for years and now the studies are showing that it helps in this was by not "feeding the Beast"  You do not have to be diabetic now days to get this for cancer.

    Yes, live for today(I personaly think I will bite the dust from Houston traffic on the way home from a perfect check up! God forbid!), but make small plans for the future.  I have a wedding , my fourth son, Oct. 29th...it is the little things!  Best, Debrajo

    P.S. I'm one of the nite owls, if you need anything, I usually check the boards late at night!

    Awe, bless you sweet girl. 

    Awe, bless you sweet girl.  You guys are so wonderful at uplifting me and my day. I have been feeling rather melancholy, not due to the diagnosis, but probably more because I'm not taking the pain meds during the day, I'm recovering from surgery, eating a new and very restrictive diet, and no longer have female parts or my bio-identical hormones. But, if this is the worse it's going to get, then I can handle it!!!

    Yes, Chris mentioned supplements being taken during chemotherapy to slow down the nauseousness. I will look into reading Tethys41. This has definitely opened my eyes to seeing each day as a present/gift. It's like you become hyper-sensitive to the blessings around you, the simple things you never saw before, and it causes you to slow down and simply appreciate the little things in life that many others take for granted. I pray that I can be a positive role model and mentor to others some day. You guys are the BEST!!!!

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited May 2016 #61
    Charissa said:

    Wow! Thank you, Cathy, for

    Wow! Thank you, Cathy, for the detailed information. I guess the pathology report will give me the details I am seeking, but not really looking forward to - UNLESS promising news. But, you're right, fear comes from a lack of education. And, as I quickly found out, the correct information can eliminate fear.

    It sounds like six cycles is the normal. Yesterday and today, I spent time talking with the nurse that works at the oncologists office, as well as a nurse at a holistic office. It sounds like both doctors want what is best for the patient and are willing to combine treatment and partner for my benefit.

    I don't see any lab results on the Sutter Gould site that shows they did the CA-125 test. Does it have a particular name or would it be titled CA-125? I seen this come up on a lot of other sites & seems pretty routine for doctors to do. Again, I can't find one of those among my reports. Hmmm? Should I request one be done? How do these benefit us?

    I've also read a lot of posts where many get diabetes and neuropathy in their feet, from the chemo treatment. Is this pretty common for most?  I wonder what the percentage is for acquiring these after treatment?

    Again, thank you, for your warm welcome and the details you provided. This group is so comforting and helpful. I feel extremely blessed!  And, today is my 12th day after DaVinci surgery and I am so elated - I have not taken any pain meds today. I did get EXTREMELY tired and had to take a nap - a first since the surgery. I think I'm just a little more in tune with my body off the meds. I should be driving by next week and have a couple weeks of normalcy, prior to chemo starting. I will update all of you, as soon as I get my results back.

    Love and hugs!

    P.S. Thank you, for remaining committed to this group and assuring us there is hope. I think it would be all too easy for many to want to put this behind them and move forward.  BUT, we need you guys. If treatment is effective for me, I think I need to remain committed to encouraging others forward too. You guys are a true blessing to all us in this new camp. Thank you, thank you, thank you!

    It may not show up on your patient portal with Sutter.  My CA-125 results don't show up on mine with Kaiser, however, my medical oncologist does order it periodically.  Just ask your oncologist if it was done and what the results were.

    It may or may not be a good marker for you.  Mine was 8 BEFORE surgery, well within normal range, then 7 after chemo and 7 after brachytherapy.