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OK, now i'm freaking out

Mmpeterson
Posts: 124
Joined: Sep 2016

Dr office just called to confirm my follow up surgery appt on Monday 10/24 and my chemo starts 10/25.  I don't even have my path report yet, starting chemo so soon is giving me the idea that my report is extremely bad!!!  Maryanne

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Editgrl
Posts: 903
Joined: Jun 2015

Some doctors begin chemo earlier than others.  Two weeks after surgery sounds a little soon to me as they generally like you to be pretty much healed from the surgery, but I don't think it really indicates that your path report is bad.

When I saw my gyn/onc at 3 weeks post-op, he indicated that he wanted to start chemo as soon as it could be scheduled.

However, one day between post-op and chemo doesn't seem like much time for you to ask questions.  I had an orientation and a port put in before chemo and none of that happened until after my post-op. Maybe some others can chime in as to how far after surgery their chemo began. 

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TeddyandBears_Mom
Posts: 1557
Joined: Jun 2015

Maryanne, My surgeon wanted me to start chemo within 3 weeks of my surgery. He said they have found it to be the most effective that way. Mine was scheduled very quickly too. Also, you might want to consider getting an anit-anxiety med to help you in all of the up-front processes.  I was never one to take any pills and my sister talked me into getting Lorazapam. I'm so glad she did. It helped me when I needed it. I never even finished the first full prescription so I can tell you from first hand experience that you won't get hooked. I now use it sometimes to help me sleep. For some reason, it seems to help my night sweats and relaxes my body.

My niece had a complete hysterectomy at age 35 for cervical cancer. She went into surgery induced menopause which caused all kinds of emotional issues. She went on anti-anxiety meds for about 6 months to get her through the hard part. She is now 40, doing great and thriving.

I hope this helps.  Hang in there! You will get through this...

Love and Hugs,

Cindi

Nellasing
Posts: 529
Joined: Oct 2016

Hi Maryanne,

I have found that once they have a direction to head they do it with all haste.  The report may or may not be bad but they now have it and have a direction so off you go...

It is a lot to take in.  Besure you take someone with you to your appt on Monday because for me when they start reciting stats my mind starts to freeze and I can't think.  Having someone there (I took my hubby and best friend) and possibly recording (mine wouldn't allow it) can help you think things through after you hear it.

We have to fight the urge to be totally upset all the time as it affects our immune systems.  When they say to think postive it seems impossible- I keep practicing that one Wink but we really do.  We need all the power we have not to fight FEAR =False Evidence Appearing Real but to face it, understand what we can (knowledge is power) and act in our own best interest.  One step at a time right?

We've all been there and I so wish I could spare you.  What you are experiencing is normal and understandable and I am so glad that you have found this board as I didn't have it and sure wish I had!!!  I'm sure many others will have amazing responses to give you.

Know we are sending our love and prayers - keep coming back- keep talking it out- keep facing each day just moment by moment if you have to- this is your own personal journey and you will find the way- I promise you are stronger and braver than you can even imagine!!!   (((HUGS)))

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Kvdyson
Posts: 789
Joined: Jan 2016

Maryanne, so sorry that they scared you like that. You should mention it to them at the post-op visit. They should never give you news like that over the phone. You can also ask them to reschedule the chemo to a later time so that you have a chance to decide what YOU want to do. I ended up getting a second and then a third opinion on my diagnosis before starting any treatment (although I did go ahead and have the port installed). Don't let them rush you into anything. You have rights as a patient. Having a full understanding of what it is they're recommending before you agree to it is one of those.  

Mmpeterson
Posts: 124
Joined: Sep 2016

Did you ask your doctor you first went to who they would recommend?  I have no idea where to start to get a second opinion.  Maryanne 

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Kvdyson
Posts: 789
Joined: Jan 2016

No, but there is an NCI-Designated Cancer Center nearby me so I told my gyn-onc I was going there (Moffitt) for a second opinion. He was perfectly fine with it.

I would start with a call to an NCI-Designated Cancer Center near you. They may not even need you to visit, they may just need the pathology slides sent to them. That's what happened to me with the third opinion - just slides, no appointment.

janaes
Posts: 776
Joined: May 2016

I agree with Kim.  You have a right to make decisions. I had a tumor board done on my cancer and even after that i went to see one of the doctors that was at the tumor board and asked him questions. lots of them.  He was ready to sign me up for chemo at my appoinbtment but thankfully my dad told him that i was going to do a possible third opinion first. It wasnt until i saw my pathology report after that appointment and understood it that i was able to think about chemo. Thats just what happened to me.

With peace and love,

Janae

rcdeman
Posts: 256
Joined: Aug 2016

Sorry to hear that everything seems to be going too quickly for you, Maryanne. It's a lot to take in, and I second the opinion that you might want to look for a second opinion. I would ask your doctor for any colleagues who also specialize in this area if you don't have anyone in mind. While my mom has seemed to experience the opposite as you in which everything seems to be going extremely slowly (she had her hysterectomy on 8/30, and now hasn't even started chemo yet), I can totally understand your panic. If you need more time to think about this, maybe you can ask to postpone the chemo start date.

Best,
Rebecca

LindyLu
Posts: 72
Joined: Sep 2016

Hi Maryanne,

Don't know if this helps, but here's my experience.  

My post-op which included staging results from PET scan was 2 1/2 weeks after surgery.  Doc wanted me to heal more and do a couple more follow-up tests before starting chemo.  My chemo started six weeks out.  However, it was initially scheduled at week five, one day after my pre-chemo informational session.  I freaked out as I hadn't had my port put in yet and would have no time to prepare.  Because I was so upset, my first chemo was rescheduled for a week later.  I am so glad.  That extra week gave my hubby and I a chance to digest all the info given to us during the pre-chemo appointment and I had my port put in two days before getting my first treatment.  I felt more in control and calmer at that first chemo  (10 days ago and doing well).  So don't panic thinking the worst because things are moving so quickly, but don't hesitate to slow things down, ask questions, if you feel like you need more time.

If there's one thing I've learned, it's everyone and every situation is different.  Do what feels right for you.  Hugs  ~~LL

 

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Lou Ann M
Posts: 996
Joined: Feb 2015

I think we all have the tendency to worry about anything we don't understand. Since you don't know why they scheduled the two events so close together,  don't waste any of your prescious time worrying(easier said then done).  There could be so many reasons, including a scheduler who had a open date to get you in.  My first time around,  I had my staples taken out by my gynecologist at week two, saw my gyno-Onc/ surgeon at week three, met with my,1st medical oncologist a few days later and started chemo at week 4.  The scheduler at my 1st oncologist always complained about finding a spot for me.

Hugs and prayers, Lou Ann

MAbound
Posts: 877
Joined: Jun 2016

I was sent home from the hospital with both a drainage tube and a urinary catheter. They took them out along with the line of staples up my belly when I went for my post-op appointment and sent me from there directly to the infusion room for my first chemo. My port had been put in just two days before that and my onc wanted to send my tissues to a 3rd lab because there was some disagreement between the first two labs, so my final staging was still up in the air.  

The chemo nurses told me that if they had their way, most onc doctors would start chemo before sending us home from the hospital so don't read more into their hurry than that they just like to move things along quickly. It's probably for our own good so that there's less time for anxiety to build before the first treatment. It's so easy to imagine it being worse than it ultimately turns out to be before you get the first one behind you and know better what to expect. You'll be ok unless you imagine that you won't be and give yourself a nervous breakdown.

There's a saying "don't borrow trouble" that applies here. If you really can't do that, then I agree it wouldn't hurt to get some help coping with your anxiety because it just doesn't help. You need calm and the ability to rest to both recover from the surgery and to handle when chemo starts.

 

Mmpeterson
Posts: 124
Joined: Sep 2016

My primary doctor prescribed Lexapro which I just picked up tonight.  I am going to call my onc office Monday to see if they can get the port in next week.  The nurse told me today that they can do the first treatment without it but I'm going to try to get it before the 25th.  Sorry for the mental breakdown, it just seems like everything closes in and then I panic.  Maryanne 

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Lou Ann M
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Joined: Feb 2015

You don't need to be sorry you are entitled to be upset scream, cry, vent here, what every you need to do to get through. We all have,days like tha, that cause excess worry.

Hugs and prayers, Lou Ann

MAbound
Posts: 877
Joined: Jun 2016

I agree with Lou Ann. This site is a no apology zone. We're all coping with a lot and believe me we understand when one of us needs to vent or "lose it" from time to time. Happens to us all and this is our safe place to do it and get the help we need to deal with it. It's therapeutic and you never know who else you help in the process of sharing what's going on with you.

Nellasing
Posts: 529
Joined: Oct 2016

I am so glad you are getting a port- don't worry IF you can't have it for the 1st one- the nurses are awesome.  I didn't get my port right away and it got unbearable to be stuck- something made me extra sensitive.  Even though mine hurt quite a bit at first I decided to think of it as my buddy and it's going to stay right where it is til I am WELL past all this- I am SO thankful for it- they can do everything through it- draw blood- give treatments- it's such a relief to me!!  I hope you find yours will be too.  

We all panic from time to time- we are human and these are very real things happening... I try to remember that no amount of worry or panic will change things- wont make it better and will make me nuts in the meantime.  Sleep and distraction help me and really really focusing on the fact that this is the day I have- what I make of it is what the day will consist of.... they get more and more precious as you look into the possibilies.  I dig deep and look for each blessing and miracle.  Enjoy each scent, color, touch.  Life is precious and we should all live these days like they are treasures. 

You will find your way- you will and these days are stressful and uncertain but we are here for you and walk along with you Kiss  (((HUGS))) as many as you need on as many days as you need

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Soup52
Posts: 902
Joined: Jan 2016

I didn't have my port until my second infusion either and everything went fine. I hope you get some answers soon. I don't know why I had radiation before chemo, but one of my friends had the same protoco.

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txtrisha55
Posts: 684
Joined: Apr 2011

Try not to worry.  Breathe.  I received my Pathology report when I had my meeting with Dr, Lea.  She had a copy for me then posted it after the meeting on My Chart,  She has to review it with you to explain what is on there.  My guess is that she is doing the chemo the same two day period you are in Dallas because you live 5 hours away and did not what you to make two trips in two weeks.  My guess only.  I had surgery, 2 weeks later went in to remove drainage bags and staples.  Bags removed but not staples. One week later went in to have staples removed. One week later port put in then started chemo.   But I live here in Dallas.  How are you doing otherwise?  It has been a week now since the surgery.  Are you healing and feeling better?  Do you have some one that is coming to Dallas with you on the 24 and 25th?  If you need someone to sit with you during the chemo let me know I can take off from work.  Let me know. trish

Mmpeterson
Posts: 124
Joined: Sep 2016

Hey Trish - I talked to Dr Lea's nurse yesterday and the dr wanted me to start chemo the week I will see her so since we are 5 hrs away her nurse thought it best to schedule the next day.  Makes sense and also she told me that they can do one session without the port then have the port put in before the 2nd one.  So far healing good.  I was released Monday.  Taking off covering over incision today and stopped taking the pain meds Wed.  Taking Tylenol no pain just some soreness yet.  No staples just dissolving stiches. She did get all the "bad stuff" out during surgery that she could see and it took about 5 1/2 hrs.  She saw a small fatty mass between my colon and bowel, she had a surgeon come in to remove it and both the surgeons said it didn't have any characteristics of cancer so praying it will come back benign.  She said one of my lymph nodes was pretty bad but not the other one.  Due to the high grade kind her surgical assistant said that Dr Lea wanted to start chemo asap.  My primary dr prescribed Lexapro to get the anxiety and panic attacks under control and took the first one last night so I could finally sleep.    If the chemo will save my life and get rid of any other bad cells then I am all for it.  Nurses were surprised I was walking the halls on Sunday and Monday but sitting around isn't my idea of healing.  My fiance is coming with me but I would like to meet you soon.  Thank you for offering to sit with me, one day I will take you up on that.  Many hugs, Maryanne

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txtrisha55
Posts: 684
Joined: Apr 2011

I said that maybe they did not want you having to drive back  and forth so much. Purple.butterfly50@sbcglobalthe dr will give you the information on the 24th and she will explain options and give suggestions.  At least she did for me. She asked if I wanted to join a trial and gave me all the paperwork to take home and read.  I did and I decided to not do the trial but go with her recommendation to do carbo and taxal chemo treatments only. I did six every 21 days. It must have worked for me cause I am still here with no recurrence.  Do I think it is gone, somewhat but the thought is still in the back of my mind I just do not dwell on it. Praying for a good outcome on your report and cancer journey. Trish

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EZLiving66
Posts: 1358
Joined: Oct 2015

A lot of my scheduling depended on how close I was to the hospital.  There were women coming from the upper peninsula of Michigan who had to drive hours and hours to get to the cancer center - I had a 10 minute drive.  They always asked me how close I was when they scheduled me so if I was farther away, they could bundle - port installed in the morning; chemo in the afternoon.  I had my hysterectomy on September 30th, port installed October 26, first chemo on October 27th.  My oncologist said his goal is to start chemo within a month of the hysterectomy.

However, I certainly know how you feel!!  It seems like our mind needs a little time to digest everything that's going on.  Don't they always tell women who lose their husbands not to make any major decisions for a year to get over the shock/grief/depression??  Well, if getting a diagnosis of cancer isn't a major shock, I'd like to know what is!!  Yet, they force us to make major decisions within weeks....even DAYS of that news!!  

I agree with the other ladies - if you're not satisfied, get a second or even a third opinion.  I never felt like I was a part of the process with my gyno/oncologist.  Until I found my GP who, I felt was in MY corner, I just did as I was told.  If I had, I'd probably be dead now!  Listen to yourself because nobody knows more about YOU than YOU!!

Love,

Eldri

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henhill
Posts: 123
Joined: Aug 2016

I never had a port for any of my chemo.  It never hurt, but ALL of my veins are now shot, can't even draw blood at all.  I wouldn;t worry aboout the first one, but I think it is better to save those veins.

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daylady
Posts: 122
Joined: Dec 2014

Hey Sweet lady, Try not to read too much into things as you move through this or you can/will drive yourself crazy.  I started chemo within a week of my post-oop visit (about two weeks after surgery, so about three weeks total).  The sooner you get into it, the sooner it will be behind you.  Do ask questions, and don't be afraid to listen to your own still small voice.  You are the one living inside your body. Eldri is right.  No one knows more about you than you. Hugs - Helen

 

Mmpeterson
Posts: 124
Joined: Sep 2016

Hi Helen - You are right, I would rather get going on this so I can get it done and praying it will get everything left over.  I am going to ask my dr many questions so I can understand this a ittle more.  Maryanne

pinky104
Posts: 574
Joined: Feb 2013

I had stage IVb UPSC.  My surgery was 5/10/10.  My chemo wasn't started until 6/11/10. I was kind of worried about waiting that long for it, especially after finding out I had the highest grade of UPSC, but it all worked out in the end.  I had a difficult surgery, with having both cancer surgery and gallbladder and appendix surgery at the same time (my CT scan had found gallstones). It took quite a while to heal from it.  Although starting chemo right away doesn't give you time to get used to the idea of having whatever stage it turns out to be, I think it's great that your doctor is so proactive to get things going so fast.  The sooner it starts, the sooner it's over.  My gyn/onc told me he has a number of patients surviving who were stage IV, so there is hope for you even if it is that high a stage.      

Mmpeterson
Posts: 124
Joined: Sep 2016

Hey Pinky - Since mine is high grade (not sure stage or grade until I get path report) my dr does want me to start chemo and not delay so I am glad about that.  I worry about the stage since some lymph node involvement but there are so many later stage survivors that are thriving.  I do expect the worst but hope for the best. I get my port on Monday morning and then chemo Tues so I am relieved they could get me in to get the port done asap.  Makes me feel a little better that I will have that ready to go.  Maryanne

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txtrisha55
Posts: 684
Joined: Apr 2011

Maryanne, glad they are getting you port in before chemo.  Take it one day at a time. Praying for a good outcome on the pathology report. Let us know.  trish

pinky104
Posts: 574
Joined: Feb 2013

If it's high grade, it'll probably be grade 3, which is what mine was.  Mine was considered stage IVb (the higest possible stage) because it had gone out of the pelvis.  I had it in my small intestine.  There wasn't much there, but just enough to push up the stage.  The high grade cancers I've seen mentioned on this website are what I had, UPSC (uterine papillary serous carcinoma), and MMMT (malignant mixed Mullerian tumor).  Although they're both rare and aggressive cancers, I've seen a lot more women with UPSC than MMMT on here.  I didn't have any lymph node involvement with mine, or at least none was ever found.  My cancer spread laterally, I guess.  Mine was in the uterus, both ovaries, the omentum, and, as I mentioned, the small intestine.  I'm glad you're getting your port in so early and getting your treatment started.  My biggest complaint about getting my port was that the room where it was done was sooo cold, 63 degrees.  They couldn't pile up enough warm blankets on me.  After I got my port, my biggest complaint was some discomfort from having it get hit by the seat belt.  I bought a lambswool cover for the seat belt, but even that didn't solve the problem.  I got my port put in on my right side, so it bothered me while I was riding as a passenger in our car.  If they put it in on the left side, it may bother you when you're driving.  My blood vessels were close to the surface.  Not everyone has that problem, so you may or may not feel discomfort from the seat belt. The radiologists decide which side is best based upon what the blood vessels on the right and left look like.  If your oncologist gives you carboplatin and taxol (the official name is paclitaxel), be sure to get a wig, cap, scarf or turban (if you plan to use one) soon.  Sometime between 10 and 14 days after the first chemo, you'll probably lose most or all of your hair.  I think I lost mine at 12 days out.  Some women shave it off to avoid the mess later.  Mine mostly came out in the shower, but I also had a hairy pillowcase. Expect to lose hair everywhere, including eyebrows and eyelashes.  It'll probably start coming in about a month after the end of chemo.  It comes in really soft feeling and may have a different color or texture for a while.  I found the nurses were wonderful, and other people have said the same thing about theirs in other hospitals.  I guess the ones that work in cancer centers are a special breed.  I didn't find chemo to be as bad as I expected.  I ended up short of breath halfway through my treatments, but that was probably because I'd refused the Neulasta shot.  I had a blood transfusion to remedy that, but it actually didn't make much difference.  Six months later, I was diagnosed with hemochromatosis (a genetic disease that causes the body to store too much iron), so that was causing most of my problem with the shortness of breath.  My iron level was extremely high.  I had to have blood taken out of me to remedy that problem.  It was strange to first get the transfusion, then get blood taken out of me a few months later, but it probably saved my life.  My little brother had a fatal heart attack just before I had my transfusion.  I later found out that the males on my father's side of the family had a strong history of hemochromatosis, so my brother probably passed away from having had that.  Sorry for going on so much here.  I wish you luck in your treatments.  You're well on your way.   

Mmpeterson
Posts: 124
Joined: Sep 2016

The unknown of how I will respond to chemo makes me kind of nervous but many say they didn't have any trouble with it besides fatigue.  I was also told to take the pain meds and anti-nausea as directed and I shouldn't have any trouble plus drink lots and lots of water with lemon.  Eating is what I want to concentrate on the most because I know that keeping my nutrition up will help keep me healthier to get through the treatments.  I stay away from most sugar except the natural kind in fruits because I have read that cancer loves sugar.  I snack most of the day instead of big meals so I am hoping that will help a lot.  The hair falling out may be the worst for me so I am trying to get ready for that.  I am going to get a wig to match what I have now but the idea of no hair is rather scary. As long as the chemo is very effective and gets me to NED then it is a small price to pay.  Maryanne

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Kvdyson
Posts: 789
Joined: Jan 2016

Ask your oncology nurses about taking Miralax or some other treatment for constipation during treatment. That is an unfortunate side effect of many of the common chemos and it is not something you want to have to deal with if you can nip it in the bud early. I took Miralax twice a day every day after a VERY bad bout of constipation during my first chemo cycle. The nurses never let me forget that I disregarded their warnings about it...

Mmpeterson
Posts: 124
Joined: Sep 2016

I sure will.  I have colace and senokot left over from surgery also.  Thank you, I can use all the advice I can get. Maryanne 

Nellasing
Posts: 529
Joined: Oct 2016

I remember that feeling well!!!  I DID NOT want my hair to fall out but just as you were told, it happens fast.  In advance of it I cut my hair 2x the 2nd time was really short and just before my 2nd treatment I had it shaved since it was coming out so much.  I didn't want that straggly look and it helped to be in control of when it went.  Just an FYI most hospitals and cancer centers have things for sale but they also have things that were donated to them- you have to ask- they were so very sweet to me and they gave me several things to get me started.  I never did enjoy the wig :(  It was hot and scratchy for me.  I have really liked the scarves with elastic so I didn't have to tie them and the little hats. 

I just finished chemo (taxol/carbo) on the 21 of Sept. and I already have a full head of fuzz.  I saw a little video on Youtube (yes I haunt it looking at everything ahead of time from the surgery, port install, hair loss, 1st chemo, hair growth etc.) and every 10 days she got more and more hair! 

I go without cover at home all the time- it felt odd at first but I got over it.  I haven't gone out that way and probably wont.  I admire the ladies who do and can but my head, ears and neck get so cold.  Now it's raining so better to keep a lid ;)   I didn't think I could do it but I did and YOU CAN- I promise you!  Try and have fun with it.

I'm thinking about you (((HUGS)))

Mmpeterson
Posts: 124
Joined: Sep 2016

I am going to the Look Good Feel Better workshop on the 27, 2 days after chemo.  It is supposed to be a fantastic workshop to learn how to deal with makeup and hair to make you feel better while you go through this process.  I am looking forward to it and hopefully the side effects of chemo will hold off for a day or two so I can go.  From what I understand day 3 & 4 is when the side effects hit the hardest.  Thank you Nellasing for the hugs!!  Maryanne

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Editgrl
Posts: 903
Joined: Jun 2015

I went to the Look Good Feel Better workshop and had a lot of fun.  I don't wear a lot of makeup, but it was great to personally connect with other women dealing with cancer and there was a lot of laughter.  And they did share a lot of good tips.  I think you'll enjoy it.

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Kvdyson
Posts: 789
Joined: Jan 2016

I pretty much stuck with scarves rather than wigs or hats. I got pretty good at tying them (with the help of a lot of YouTube videos) and they really ended up being a bit of a fashion statement. The picture I have posted right now is my hair 4.5 months after the end of frontline and after one hair cut.

The process of losing my hair the first time was pretty traumatic but once I shaved it off, it was actually quite liberating. It grew back during the radiation part of my sandwich treatment then fell out again once chemo started up again. It was more of a pain in the butt the second time and not really emotional at all.

The good news, if there is any good news, is that it grows back and you get to find out what kind of new hair you'll get. Mine is coming in much more wavy than the original and I'm kind of digging it. ;)

Hang in there, Maryanne. You're going to do fine!

 

Mmpeterson
Posts: 124
Joined: Sep 2016

Thank you!  I am anxious to get this all started so I can have a somewhat "new normal" kind of life.  Maryanne

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Lou Ann M
Posts: 996
Joined: Feb 2015

I went with hats and caps.  Had a wig and,didn't like it at all.  Tried the scarves, they weren't for me.  I was teaching school when I,started this rollercoaster ride and I got,some animal hats that my students loved.  Still use them and have,quite the collection of different colored hats and caps.  My cancer center has many hats that people knit for cancer patients to take free of charge.  Get a soft knit or cloth hat to wear at night.  Bald heads get cold quickly.  The American Cancer Society sells some really slot caps that go under wigs.  They make a wig much more comfortable.

Hugs and prayers, Lou Ann

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Editgrl
Posts: 903
Joined: Jun 2015

I wore everything...  I had a wig, many scarves, knit caps, and sometimes I went commando.  I bought the wig before I started chemo, and then gradually added other headware.  The pre-tied scarves were probably my favorite, and I wore them most of the time.  Helped protect my head from the sun, as it was late summer here and still pretty warm when I started chemo.  I generally wore the wig for social occasions.  It does take a while to get the hang of scarves if you're not using the pre-tied ones, but like Kim said, there are some great videos on YouTube.  In fact, I wore one style I had found to my Look Good Feel Better workshop and the women running it wanted to know how I did it!

janaes
Posts: 776
Joined: May 2016

We all do this diferently dont we.   For me my wig was all i wore.  I guess i stuck with that because 23 years ago i did the same thing.  I know we all do it differently and thats the great thing.  It wasnt until about two weeks ago that i took my wig off in front of my daughters friend.  I think my situation has some to do with my kids and how they feel about things.  Its was just easier for all of us to just keep things as normal as possible and that is how we did that.  my daughters friend had a neighbor who had cancer and my daughter saw her with her wig off and talked to her and so one day this friend was over at my house and we all decided that taking my wig off would be okay.  it felt nice to do it.  My daughter was a bit reluctant but fianally was okay. 

Mmpeterson
Posts: 124
Joined: Sep 2016

So I have a question, many said to cut your hair short so it's not so traumatic and others say they shaved their heads because it was too hard for them to see the clumps coming out.  I have below the shoulder hair so I am not sure the most "non traumatic" way to do this.  Maryanne

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DrienneB
Posts: 186
Joined: Aug 2013

Hi Maryanne,

I have always had long hair, so I had mine cut short the week I started chemo, just so that the mess would be less (in the tub, on your pillow, everywhere). The photo I'm using on this site was taken the week I started chemo. I wanted to eventually shave my head, so I went to a barber and asked what type of clippers should be used. Because of blood-borne diseases, and the fact that I already have one myself, it seemed wise to bring my own clippers. (People get knicked and bleed, and no one is there to monitor the barber to make sure the blades are sterilized, etc.) So I ordered some clippers from the internet and took them to the barber. As it turned out, they were the wrong model for the kind of close but not skin-close shave that I wanted.

In the meantime, my hair was falling out, and I realized that I appreciated having the wispy bangs hanging from the edge of my hats. I just hung on to the closest thing to normalcy that those thin bangs represented. I never did clip it. I went hatless in the evenings when I walked around town and hiked in the hills near my house, and I wore snowboarder beanies when I went out on other occasions, and sometimes scarves. I tried on wigs, but they just seemed unattractive and expensive. I wound up finding a $35 joke wig that was actually cute. It was a page boy cut primariy one color, but with exposed roots of another color. I thought it was great, but only wore it ONCE! I really wanted to laugh as much as I could. I also found a T-shirt at the thirftstore with the logo from "America's Top Model", which I thought would go well with my bald head.

This is just me I guess, but I was also fascinated to watch the changes as it came out. It seemed like an art project, the way the hairs that were about to come out would stand up in protest. It was interesting. I never really felt as bad about my hair loss as I thought I would. It would have been much harder if it had never come back and if I'd expected that it wouldn't. For me, the anxiety about losing it is worse that the experience of losing it. But I yearned to get it back, especially my eyelashes and some of the eyebrow hairs that finally came out. I had a magnifying glass to look at my eyelids, and cheered when those buds of lash hair made their appearance.

I had chemo about a month after surgery. I would have had it one or two weeks earlier, but I had to get over a urinary track infection first. I like some others here, was happy to just get the show on the road. Sooner started, sooner finished.Lots of wonderful advice here from the other women about managing chemo. Watermelon helped me with the constipation problem. I also took Miralax and everything prescribed to me for the nausea.

You will probably handle all of this better than you think. Wishing you peace and strength.

jane

 

 

Mmpeterson
Posts: 124
Joined: Sep 2016

Thank you Jane!!  I am so ready to get going with this.  I have made notes regarding any chemo advice as far as nausea, mouth sores, etc from the ladies here so I hope I will be prepared as best I can be but of course everyone is different.  I am going to the workshop Look Good Feel Better next Thursday (2 days after chemo) to learn and meet other women that are going through chemo and I am looking forward to that.  I pray that I will get through chemo without many side effects but whatever comes my way I am determined to handle it the best way I can.  Maryanne

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I had my hair cut short at the beginning of chemo and when it started to fall out my husband gave me a buzz job.  I believe that Cost Cutters give free hair cuts to,cancer patients.  My husband decided at the fourth time that he wasn't very good at barber skills so,he,took me there for the buzz job.  I know,some that took a,few,freinds along and made it into a little party.

Hugs and,prayers, Lou Ann

i do not know,where all the comas are coming from!!!!!!

janaes
Posts: 776
Joined: May 2016

For me I could never shave my hair.  To this day  (I am 3 weeks out from all my chemo) i still have a little hair.  I look bald so its not very much.  when my hair  started comming out i just combed it every night and sometimes other times.  My hair was just under shoulder leghth.  I liked my wig better than my hair atfter it started comming out quite a bit so i just put my hair in a ponytail and put my wig on to go places. Ater  a wile i did get tired of combing it and had my kids cut it real short.  It was totally uneven an didnt care cause I wore my wig every where.  This is just my story shaving it might be right for you.  I really am in a pradicamant right now because i antisipate that mine will be growing back and my longer( less than an inch long) peaces that are still here might look funny with my new hair and wouldnt want to shave it then for sure.  Other did find shaving not tramatic for them.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I shopped for a wig before starting chemo. I paid extra to order one from a spa that looke like my shoulder length hair. I didn't cut my hair short,but just before my second chemo it was coming out like crazy, so I had it shaved off at the spa where I bought my wig(free of charge) at first I wore my wig whenever I went out, but eventually I also used hats and pretied scarves. Now my hair is growing back and I am going out without the wig. ( it's not the preferred color, but people tell me they think it's cute. I guess I'll have to take a selfi.e. And post it. Maybe I can get it right side up.

MAbound
Posts: 877
Joined: Jun 2016

I kept hearing about how one's scalp gets sensitive when you lose your hair, so I never shaved it and I never lost it all. It came out in clumps initially and then slowed down quite a bit. I didn't hear about hypothermia to stop hair loss during chemo until it was too late to try it, but I was using ice packs a lot on my head to deal with the hot flashes after surgery and maybe that helped. I usually had an ice bag on my head during chemo and the top of my head is where I kept the thickest amount of hair. I think it wasn't until my fifth chemo that I started to wear a turban to infusions. My last chemo was about 6 weeks ago and I already have more than 1/2 inch long hair but almost no eye lashes or eyebrows. Those fell out after the 6th and final chemo, unfortunately.  My hair stands up in kind of a spike at the moment. I've worn my wig a few times to go for lab work and such, but it's been such a warm summer that I mostly didn't bother with it. 

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

I shaved it all off myself the first time using a trimmer but then went back and lathered with  shaving cream and shaved off with a razor. For me it was not.a big deal. It is just hair. It was the summer of 2011 in Texas and it was 100° almost ever day.  Way to hot to wear a wig, hat or even a scarf.  I did buy hats and scaves but really did not get into the hang of them.  Just went bald. I went to work, out shopping, it did not bother me.  Hair did not make me who I am so as I said it was no big deal for me. I keep it about half an inch now five years later. It was down to the middle of my back before.  I hate the way it came back. It was straight as a board before now it has curl to it. Not use it that and I hate how if it gets longer that it sticks out everywhere and does not lay down flat. It is just hair and it did grow back so I am ok with that but sometimes I wish it had not just to be bald again. It was very freeing for me. I really enjoyed it.  But like I said that this is how I felt about lossing my hair. I know some ladies it is very emotional for them to lose their hair. I wish you all the best Maryanne in your visit with Dr Lea on Monday, getting the port in and your first chemo treatment. Praying for you. Tell Dr Lea hi from trish for me.   Let us know when you can the results of the path report. Trish

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