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Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Hello ladies, I am so glad I found this site. When I originally Googled my discharge diagnosis "Endometrial/Uterine Adenocarcinoma (Hcc)", nothing promising came up. In fact, it made me have a panic attack, as I thought I had only weeks to live. My lab results will come back in approximatley a week. Aside from the above diagnosis, on my discharge form from last weeks radical hysterectomy, I've been told the type I have is the highest grade - most aggressive & unpredicatable. I'm assuming this means Type III. I get so overwhelmed trying to figure it all out. And, again, there is not much positive news on-line.

The next step will be to find out the staging and if it spread outside my female organs through the lab results and then come up with the next plan. I was already told, because of the type of cancer, I will have to undergo chemotherapy.  Mind you, I knew NOTHING about cancer two weeks ago - with all the words associated to it ike a foreign language to me. I have a friend begging me not to do chemotherapy, insisting it will kill me and that I should go the diet route. I'm now doing research on both. I thought I read something about a place where you can go for chemotherapy and have a cancer diet plan administered at the same time.  But, now I can't find the notes on it. There are also institutes that you can attend, where they focus primarily on diet.  This is all so overwhelming. After using the restroom, I am constantly checking for blood, knowing the next step would be the removal of my bladder and colon, as this is where it normally travels to.

I homeschool my two precious daughters, ages 14 & 16. I hope and pray I will be able to continue schooling them through high school and this doesn't take me out sooner.  This news has definitely caught us all by surprise.  Especially, because we've always been health conscience (ie., eating healthy, using deodarant without aluminum, using natural toothpaste, soap, essential oils, and shampoo; using glass and not plastic, never use the microwave, and on & on).

My primary goal is to set up a network of friends that understand this journey - that can be an encourgement, as well as me encouraging those in need, and we can share the outcome of our treatments. My strength, peace, and hope comes from having a relationship with the Lord. Thank you, for taking the time to read this and reply. Blessings to all.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

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.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

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

Red Corvette
Posts: 114
Joined: Jan 2016

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's picture
Charissa
Posts: 124
Joined: May 2016

Thank you, Red Corvette. What a blessing you are to us. Someone mentioned Googling "cold capping" at one time. When looking, it appears Stanford offers caps that are supposedly working well.  I think they are called Dignicaps. So, it sounds like it does work. I will look into the site you provided. THANK YOU!!!!  The nurse at my oncologists office had never heard of this yesterday when I talked to her. I'll be excited to try it.

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

I went to the website you provided. They have a wealth of information. Which company/items did you go with? Thank you, so much for providing me this information. I will pm you as well, just in case you don't see this. How are we to know when new messages are posted? It only notifies me if someone sends me a CSN E-mail. Hmmm?

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

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's picture
Editgrl
Posts: 903
Joined: Jun 2015

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's picture
Charissa
Posts: 124
Joined: May 2016

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!!!

janaes
Posts: 800
Joined: May 2016

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

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

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's picture
Charissa
Posts: 124
Joined: May 2016

Welcome, Janaes. It sounds like we are kind of at the same point. Be sure to check back with us, once you receive your results. I should be getting mine this week. If not, then I have an appointment with my oncologist on June 9th. My surgery was two weeks ago today. This group is phenomenal. I can't say enough great things about them. They are most definitely an encouragement and inspiration. Read through the posts and you will learn TONS. I spent most of my day today re-reading them all and jotting everything down in a notebook, along with researching everything on-line to have a better understanding. Education helps to conquer fear. We're not alone, as you can see by all the support here. Blessings with hugs.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

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's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

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

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Oh, Eldri, all of that is awful! You are an amazing lady, definitely in warrior mode. All I see is your beautiful picture and smile. It's hard to think you have gone through and are still going through this.  If and when I have complications, I will be sure to review this post as not to feel sorry for myself. On a positive note, it sounds like your body is on the road to recovery. I just spoke to a friend of my sister-in-law today. She had the USPC 14 years ago. It just returned this past January in her sinus and now has spread throughout. She too is having a hard time getting up and walking, after her treatment.  She has to use a wheelchair for doctors appointments, and needs help to the restroom, as her legs aren't working well. She has lost most of her strength and needs a chair that lifts her up and out of it. But, she is marching forward to battle this - not giving in.

Love, hugs, and continued healing.

pinky104
Posts: 574
Joined: Feb 2013

Losing my hair (EVERYWHERE) was one of the worst things about chemo for me. I didn't shave it, hoping I wouldn't lose it all, but I did. It came off in the shower, making a huge mess, and I had found a little on my pillowcase before that. It came off over a period of a couple of days.  I got a free wig at my cancer center (thanks to the local Rotary Club), but it was uncomfortable.  I tried scarves, but they would blow in the wind and show my bald scalp.  One of my stepsons showed up without calling first, and I had my wig off.  Boy, was he surprised!  Eventually, I learned to joke about it.  I sent an e-mail around to the family with a picture of me standing next to my bald husband, and commented about how people say the longer you're married, the more you look alike.  I'm sure I shocked some family members with that one.

Be prepared for a (hopefully) temporary change in your hair when it comes back.  For me, it was about a month after chemo before I had much progress with its return.  It's soft and fuzzy at first, often curly, and sometimes a whole different color from before.  I've known people who had it a different color for many months before it changed back.   

I noticed after chemo that I'd lost some of my hearing.  My oncologist told me that I probably lost some of the hairs in my ears that help to conduct sound.  When I got my hair back, my hearing didn't come back.  Neither did about half of my eyebrows, but I later found out that people with thyroid disease, like me, often lack the outer half of their eyebrows anyway.  I think my eyebrows were worse after chemo was over than before it. I hadn't noticed any missing eyebrow hair before chemo.    

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

pinky - that is SO funny about the picture with you and your husband and starting to look the same after all those years of marriage!  I found the youtube clip of Seinfeld where George was telling Jerry "She's BALD, Jerry!" and sent that out to my friends.  

Thanks for making me laugh this morning!

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Thank you, Pinklady, for your transparency, humor, and detailed experience. I am going to get the Penguin Cold Cap system and pray it will work.  The success rate is pretty high for the type of chemo we get (Taxol & Carboplatin). I should know by the second treatment. My mom is a retired cosmetologist, so I'm hoping she can wrap it snug enough and remain diligent on changing it every 30 minutes. It's quite expensive and cumbersome, but my husband has given me approval to give it a shot. I'll keep you posted on the results, once started. I'm still awaiting my pathology report. Hoping "No news is good news."

Blessings and hugs to you.

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

Charissa, I lost my hair not long after my first chemo and even though I cut it short, it was a shock.  I felt depressed for about two days and then on the third day, I looked at myself in the mirror and thought 'it is what it is.'  I was ok after that.  I read somewhere that it was not a good idea to shave your head, not sure why.  I am glad that I didn't as that would have sent me over the edge for sure!

Warm Wishes,

Cathy 

Anonymous user (not verified)

After the first chemo, I had my head shaved (I had longer hair and didn't want the mess when it came out).  Shortly after the shaved hair fell out I developed a severe case of folliculitis, I had to take antibiotics to treat the infection.  I've heard that happens more if you shave your head.  I didn't think much about my hair gone, wigs itched and didn't feel natural, scarves made me look silly, I did like hats, but didn't often wear them inside at work.  It wasn't until I saw a picture of me without hair that I went Yikes!  I look horrible, but with a little convincing from my friends, I'm now scans head coverings again.  My hair is growing back (more on the sides than on top), but it's super fuzzy, fine and WHITE!  Hope it grows into something other than what it is now, but you're right "it is what it is".  Hugs Nancy

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

I'm hoping I can maintain mine through cold capping. The success rate is fairly good. Hopefully, I'll be one of the 90% that it works for. But, when you find yourself with a diagnosis such as ours, you kind of wonder if the odds will be against us here too. Remaining hopeful.Should know by my second treatment.

Still awaiting news from the pathology report. I meet with my oncologist on the 9th. I'm assuming if it were bad news, they would have called me to schedule any additional surgeries or to move the chemo up sooner then the 4 weeks after my hysterectomy.

Love, hugs, and warm wishes back atcha.

txtrisha55's picture
txtrisha55
Posts: 688
Joined: Apr 2011

Trish in Dallas Texas age 55 at diagnosis of Stage III C1 MMMT (carcinoma sarcoma 1A tumor in Uterus,  2 microscopic cells 1 lymph node) Grade 3 cancer  so upgraded to stage 3c1.  Very brief history, I was post-menopausal in 1992 at age 36. In 2004 started spotting again went to my regular gynecologist Dr. Center performed a D & C and everything was normal and clear.  I had yearly PAP’s and in Sep 2010 had a colonoscopy which was normal.  

March 7, 2011 started bleeding and intense pain. Went to regular gynecologist and she performed another D&C with hsyterscopy March 25. The results went to pathology.

April 1, 2011 got the call from Dr that the pathology report was back and it was cancer.  She scheduled an appointment 4 April with a gynecologic oncologist at the UT Southwestern Medical Center.  Dr. Layanthi Lea is a Gynecological Oncologist doctor and was chosen for me.  She is a God send and remains my doctor today.  She is patient and caring and takes time to explain everything.  On April 8, I had a total abdominal hysterectomy with the uterus, tubes, ovaries, cervix removed including the Omentum.  I started chemotherapy treatment with Carboplatin / Paclitaxel on May 6, for 6 treatments every 21 days at the Cancer Center.  Day 14 after the first treatment I lost my hair in clumps then buzzed it with a #1 electric razor then later used shaving cream and a razor to shave it bald.  Being bald was a very liberating experience for me.  Did not wear hats, scraves, or wig, went to work bald and everyone loved it.  I know it is nto for all but for me it was great.  I keep my hair very short now about an 1" long.

The treatments were not that bad except day 4-7 made the joints ache; I did not get nausea from the chemo treatments.  

I went back to work in June and took off on treatment days and then about the 4th day thru the 7th day after the chemo treatment when side effects of the treatment kicked in.  Aching joints, fatigue, and feeling like you are coming down with the flu.  Last treatment day was 22 Aug 11. Only side effect was hair loss but it grew back. Went to Dr. Lea every 3 months for checkups and blood work CA 125 was 15 before surgery now down to 11, so CA is not a good marker for me but the test is still done.

Feb 2014 had another CT scan and still all clear, Dr. Lea said: “See you in August.”  So now I get to go every 6 months.

 One thing I learned from all of this is to keep a positive attitude.  I went into this journey as OK, I have cancer, let’s take care of it, get it out, get the treatments and move on.  I found out that I was stronger than I thought I was.  Yes I had a few bad days but on the whole it was positive, even Dr Lea has been impressed with my attitude and tells me that every time she sees me.  I have changed some of my diet and exercise more and I do take supplements but mostly I just take every day, one day at a time.  Back at work full time and take off days to spend with my  family, grandson and my friends.

 One thing I tell women that ask me questions about what my symptoms were and how did I know something was wrong, the answer is no one knows your body better than you, keep in tone with it.  When something just does not feel right go to your doctor.  If the doctor just says you’re going through the change and you do not like that answer find another doctor that will listen to you and your concerns and actually will run some test to determine if anything is going on.  Do not just take the answer that nothing is wrong.  Wising you all the best. trish

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Wow, Trish, what an inspiration you are to us! Thank you, for all the detailed information. It helps us newbies so much when everyone shares their stories. I am still awaiting my pathology findings. I'm sure they are in, as it has been 18 days since my hysterectomy. I'm believing, "No news is good news." Otherwise, I'm assuming if it was bad, they would have called to schedule any necessary surgeries or to start chemo before the 4 week mark.  I meet with my oncologist on the 9th to go over the results and discuss my treatment plan.

I contacted a holistic doctor in San Francisco, who has put me on a special diet too. He will then work alongside the chemo treatments, with whatever supplements and tricks he has up his sleeve to keep my immune system strong and running. I'd be curious to know what supplements you are taking, along your modified diet. Can you private message them to me? Thank you.

I'm hoping to try cold capping and pray it will work. The success rates seem pretty high. It is relatively expensive, but I really would like to maintain my longer hair, if I could. My hubby has approved me giving it a shot. Even though, he said loosing my hair would be no big deal. Really? I told him if he truly believes that then he can shave his head with me. Well, that got a much different response - real quick. Lol If cold capping doesn't end up working, then I am good if it falls out too.

I think with having my two daughters at home, being bald will be a permanent reminder of the cancer. I am trying to keep as much normalcy as possible. They are both sensitive girls and because they have only been homeschooled, with the youngest one still having three years to go, they would be devastated to loose me at this point and time in their lives. We talk of death often and they know it is inevitable and that we serve a Sovereign God who makes no mistakes, but they are seriously hoping God will heal me and allow a few more years with them.

I joked with them about shaving their hair with me, but they both are refusing. Again, I was joking with them and would never ask that of them. But, I do have a greater appreciation for those who come alongside their family and friends and do this with them - shave their heads. I can't say I'd do that, not that I love my friends or family any less, but that is a hard one for me. And, because of this, God probably will want to teach me a valuable lesson and I will probably end up loosing my hair. Lol

You are so right, it is so important to know your body. I knew something was wrong when I got my first symptom. However, when you bringing up the cancer word to family or friends, they think you're a hypochondriac (which are now in shock finding out it is). So, I went along with trying to undermine it and its seriousness. Not a good thing! Looking back, I would have advocated harder to get to the bottom of this quicker. I'm not sure if I will remain under my current OBGyn when done with my oncologist. She thought from the vaginal ultrasound it was a polyp and sent me on my vacation. Surgery to remove that polyp didn't take place until 5 weeks later. Ugh! However, on the other hand, once the lab results came back and she found out it wasn't a polyp, but stage 3 cancer, she made phone calls and more things took place in seven days then in the entire 16 weeks of my symptoms. So, maybe, she will be proactive with me from here on out. I do understand, we are in the small percentage of this type of cancer. And, because of that you could see her concern all over her face, when informing me. She said, "I would have never suspected this from you and your health records."

Thank you, Trish, for your well wishes. From everything I read here, at least I have some assurance I'm not going anywhere in the next few weeks. But, that I have months ahead with treatment, and great hope of years ahead by beating this. Love and hugs to you.

willjh
Posts: 10
Joined: May 2016

Charissa, I would recommed that you talk to someone who has done the cold capping- so that you will know exactly what is involved.  I have a friend who recently finished 12 or 17 (can't remember the exact number)chemo treatments; she did cold capping and kept most of her hair.  However, it required a team of people to do the process, somone to pick up the dry ice the night before (unless your treatment center is already equipped for storing dry ice etc.) and then on the day of treatment someone strong enough to get the dry ice to the hospital and, she had two or three friends who stayed all day at the treatment center to assist with the process.  A few weeks before her chemo began, there was a training session for everyone.  If I recall correctly, the timing and the temp had to be exact or the cold capping was not as successful.   It also was very painful and pain meds needed to be administered before the process began.   Not sure, but I think the cold capping continued in the car and at home for several hours after infusion was finished.

Since UPSC patients, usually  do 6 chemo treaments, it would be an easier process for us than my friend.  Whatever you decide, good luck !

 

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Willjh, I have done a lot of research on it and yes, it can be a long and cumbersome process.  However, like you mentioned, if treatment is once every three weeks, then I thought it worth giving it a shot. My mother has been a licensed beautician all her life. And, with her wanting to be here for me, I think this will be a great way to make her feel important. ;) From what I read, you do have to have dry ice. Sadly, no one in our area has the freezer. You place the cap on 50 minutes prior to treatment, through treatment, and three hours after treatment. From the many testimonies I read, it's usually uncomfortable for the first 10 minutes.  And, yes, you have to change the cap every 30 minutes to keep it within the right temperature. It's kind of a big ordeal and will require much time, but to me, it's worth it. My hair grows so slow at my age, it would take years for it to grow the length it currently is. Thank you, for letting me know your freind had success with it. Hopint it works for me too.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Just keep in mind, some of us are getting treatment every week for 18 weeks. I'm on my 7th one and tolerating it pretty well. Limited side effects might be worth the weekly therapy. Hair becomes less important as time goes by. You're a beautiful woman who will remain beautiful with or without hair and will have a whole lifetime ahead of you to grow it back. Taking care of yourself becomes pretty time consuming during this journey. Pace yourself. 

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Cheese queen, I like your wig! I do miss my hair, but my wig has received many compliments. Best of luck Charissa with your cold cap treatments. We will be interested in your progress:)

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

and it was the cheapest one I bought. Who knew????

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Wow, that's great that it was cheap. the one I got was expensive, but I figured What the heck I wouldn't be going to have my hair done anytime soon:)

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

i bought an expensive longer one for that same reason. I think I paid $400. Then I got a cheaper shorter one at the same store which I hate. It's like wearing a rug, the cap is so heavy and the back rides up all the time so I look like a bubble head if I don't keep pulling it down. The bangs are way too long and can't be cut because the cap is so close to the bangs. It was $100.  I don't know what I was thinking. This one was about $60 on sale at Paula Young. I really like the lace front wigs. I think they look more natural. 

Charissa's picture
Charissa
Posts: 124
Joined: May 2016

Wow, after reading additional posts elsewhere, I may not like the cold-capping if chemo treatment takes between 5-8 hours. I am seriously so ignorant to all of this. I thought I would be in and out in a half hour or less. I can't ask my mom to stay with me for that duration of time. Yikes! I guess it's good I didn't put a deposit on the cold-capping yet. I will know all the details tomorrow. Thank you, to everyone, for all your time, wisdom, encouragment, and well wishes. My hope and desire is that we will all be here 5, 10, 15+ years helping others along their journey. Much love and hugs to all of you.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2863
Joined: Mar 2013

Yes, like Editgrl said, it does take awhile.  I am amazed that I hear this is not explained to people.  Even when I was getting my last chemo, the woman in the bed caddy-corner to me had no idea.  I was fortunate my chemo nurse told me in advance how long it would take.  In my case, and it may be different for others, it was 1 hour saline, 3 hours one type of chemo (I can't remember if it was carbo or taxol), 1 hour chemo and then 1 hour of saline again.  I did not have a port so it did matter how long it took to stick me every time, but 5 1/2 hours was average.  

I will tell you exactly what I said to the woman in the bed caddy-corner to me that day:  I know the end seems so far away but you will get there and you will amaze yourself. 

EZLiving66's picture
EZLiving66
Posts: 1467
Joined: Oct 2015

My chemo with the port took less than three hours but with the vein, about four.  I would be the last one to get there in the afternoon and the first one to leave.  I have no idea why it went so fast because I knew other ladies were there long before me.  

I bought four wigs, all different lengths.  The longest one was the most expensive and the most like my own hair before chemo.  I also like the lace caps the best although I always felt like the wig could fly off in the wind - LOL!!  I'm glad that I have an inch or so of curly fuzz so I don't have to wear it during the summer.  

Best of luck to you!!!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1734
Joined: Jun 2015

Great picture Eldri. Your hair has grown a lot since the last one!

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Yeah, I remember looking at my first chemo appointment on the patient portal and seeing it scheduled for 5 hours... 5 hours!!! And that assumes everyone is running on time.  I think my first one took over 6. It did get a little shorter near the end of chemo as they began infusing the taxol at a higher rate since I had had no reactions, but I don't think it ever really took much less than 5 hours.

Soup52's picture
Soup52
Posts: 906
Joined: Jan 2016

Yep, it has taken at least 5 hrs each time and add to that the blood test before and then seeing the oncologist. That's how it works at my cancer center. I just plan for a day of it, but truthfully if you are lucky enough to have friends or family to come with you, the time goes fast. I always bring magazines and my iPad, but I hardly end up using them.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Soup, that's how it ended up for me as well.  It started out with me seeing my oncologist and getting the blood work a few days before, but when my counts were high enough before my appointment with her, we re-scheduled all of that for the morning of my chemo.  So, yeah, most of the time I was at the hospital most of the day.

 

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