New to this Camp

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, 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.

Red Corvette said:

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

 

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?

pinky104 said:

Baldness

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.    

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.

txtrisha55 said:

Sorry but glad you found us.

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 4^th day thru the 7^th 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

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 said:

Charissa, I would recommed

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 !

 

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.

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.