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Post surgery-cancer has spread

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

Hi all...learned that my cancer has spread to lymph nodes. Docs are recommending 6 rounds of chemo then 30 sessions of radiation both internal and external...

I'm TERRIFIED of chemo and probably just as concerned about radiation...can you all tell me what side effects you've had...specifically HOW DO YOU FEEL? How sick from the meds do you feel to lose all your hair as they have told me to cut mine as I will lose mine.

Any advice or experience you can share is truly appreciated.

Colleen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I'm just about to go to bed, but I remember those early sleepless nights when I was at the same place in my cancer journey as you are now. I will answer with more detail tomorrow but for tonight, I encourage you to use the Search Box on this page, and put in 'radiation' or 'chemo', or you can simply scroll down the various threads below and pop open the topics that talk about your concerns. There's an amazing resource for you on this Discussion Board in the archives of all of our discussions. ((((BIG HUGS)))))

Deblittleton's picture
Deblittleton
Posts: 56
Joined: Feb 2009

Alot of us have had chemo treatments X 6 and then radiation treatments 25 times.
I cut my hair in a short do after my surgery. Three weeks into my chemo treatments I started loosing my hair. Glad it was short ones on the pillow. Then I had my buzz cut and my wig cut to me on the same day. There are such wonderful and beautiful wigs out there. My friends could not tell it was a wig till I told them.

Chemo #1 and #2 was a little fatiguing, I was still recovering from an open hysterectomy. A long verticle incision vs the robot surgery. I received the shot Neulasta the day after each chemo. The side effects of the shot, bone pain, is what made me lay low for 3 days after. Never had nausea or vomiting. My appetite was tremendous which made me gain 10 lbs. They do not want you to worry about dieting or gaining weight during this time. And I didn't. Each treatment was a little less bone pain.

I just finished 4 wks of radiation then side effects happened. I am dealing with frequent diarhea (there are meds for that) and a bad "sunburn" in the pelvic area. So I have this week off and hope to finish my last week of radiation next week. I have lost 4 lbs. Now I know why they did not want me to worry about weight gain! There are certain things I can and can not eat. The dietician was very helpful.

Everyone is different. Thinking of you and sending prayers.

Debbie

deanna14
Posts: 734
Joined: Oct 2008

I can relate to where you are... this is such a scary journey, especially in the beginning.
First, I would recommend that you request a power port for your chemo treatments. It is a semi permanent IV access port that can be used for blood draws, IV's and scan injections. It will save you a lot of needle sticks and IV starts.
Radiation was okay. It was very scary to think about, but not near as scary when you get started. Follow the low fiber diet and keep imodium with you at all times. You probably will not need the imodium much if you follow the low fiber diet. I had slight nausea in the afternoons after I had treatment. I felt pretty good most of the time, but all of the sudden I would get super tired in the afternoon after my treatment. It was a feeling like, I just had to stop and rest. Be kind to yourself and take plenty of naps. If there is anyway possible that you can take off work during your treatment, I really recommend it. Some people find that it is better for them emotionally and mentally to work... not me. I have taken the time to take care of me. The internal radiation treatments are scary and a little demeaning... just remember, you just have to get through it. It doesn't hurt and essentially no short term side effects. You will either need to be sexually active or use vaginal dilators after the internal radiation. They will give you all of this info when you start radiation, but just a little bit of what to expect.
Chemo is not at all as bad as one would imagine. Don't get me wrong, I would really rather not do it again, but I would if I had to. My best advice is to let your doctor know if it is making you sick. They can adjust the dose, or they will give you a different prescription for nausea. Be sure that you stay hydrated. Pre medicate before your treatments for constipation. I took Colace which is an over the counter stool softener and I used Miralax and tried to drink a lot of water and fruit juices. I don't like prune juice, but the plum juice is okay tasting and will help just as well as prune juice. They also make cherry flavored prunes that are very tasty. Almost like a treat and I ate a lot of those. The constipation is the worst part of the chemo in my opinion. Stay on top of it, prevent it... it can make you miserable. Your anti nausea and pain meds will also contribute to the constipation.
I got Neulasta injections 24 hours after each treatment and about 24 hours after that, I had a lot of bone pain. I started taking tylenol regularly after the injection for a couple of days and if it got worse, I took the pain medication that my doctor prescribed. I also took benadryl for a day or two after chemo. One of the drugs you will probably get is Carboplatin which causes flushing. The benadryl helped with that and it helped me sleep through the worst couple of days after chemo. Some people are too wired from the steroids that they give you as a pre medication to your chemo. I think the benadryl helped me. Again, be kind to yourself... sleep when you need to, allow your friends and family to take care of you during this time. As women I think it is hard for us to let people take care of us. This time is about you and it is okay to be a little selfish right now.
As for the hair... this was really hard, I'm not gonna lie! I thought I had prepared myself but now I'm not so sure that it is possible to prepare for that. I tried/try to remind myself that I am who I am with or without my hair. I have also gained about 30 pounds since surgery. The steroids cause a tremendous appetite, inactivity and menopause and emotions have all contributed. All of these things can be a blow to your self esteem... don't let them be. Also, don't be afraid to ask your doctor for something to help you through this time. I take Effexor which helps with anxiety, menopause symptoms and depression. I know several people going through cancer treatment that need anti anxiety meds. Back to the hair. I cut mine short, had my first chemo, went and had it cut very short. Cried. Day 14 after my first chemo, my hair started to come out. In about 3 days it was mostly gone. The day it started to come out, I cried all evening... my poor husband! I already had my wig and a lot of hats, caps and bandanas. You will find what is comfortable for you. I wore a bandana and a cap or just a bandana for a while then it got warm outside and I ended up just going bald. I never went out of the house in my wig b/c it was too hot and itchy (I also have a LOT of hot flashes). The hair loss is just not easy and there is no way to get around it.
I do have a bit of neuropathy in my fingers and feet. There have been times when my feet ache so badly that I want to cry. My doc has me taking B6 supplements daily and you can buy them over the counter. I don't really know if this has helped, but it can't hurt. I had my last treatment June 10 and my fingers rarely hurt anymore and my feet are getting much better. They only hurt when I am on them for long periods of time, or sit for long periods of time.
If you think of anything you want to ask or talk about please let me know. I will give you my email address if you want. You are going to find a lot of strength that you didn't know you had! You are going to appreciate your life more than you ever did. I wish I had never gotten cancer, but a lot of good things have come to me. I married my best friend in November after almost 10 years of being together. I gave my heart to the Lord in January and was baptized in February. I have been leaning on him ever since, I don't know where I would be without Him. I have grown closer to my husband and my family and I have reconnected with friends I hadn't seen in years. I know now how much I am loved and I have a much greater capacity to love in return. You can do this... I know you are scared, but you will do just fine! Keep your eyes on the Lord and he will carry you through this terrible thing.
I hope this helps some and please let me know if I can do anything for you.
God Bless you Colleen!
Love and Hugs,
Deanna

colleenmarlboro's picture
colleenmarlboro
Posts: 7
Joined: Jul 2009

Your post was so detailed and it has helped me to hear the truth about what you went through. I can't thank you enough. If I could have your email that would also help. I'm trying to connect with just a few knowledgeable and honest people who are willing to share ideas, experiences, etc. Family and friends are good/helpful... but they don't have cancer!

Thanks for everything.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Deanna gave you a really thorough run-down of what to expect, and I won't add much else. I do want to reiterate that you need to really stay on top of your bowels throughout your treatment, and pay attention and intervene if there is even a chance of you getting constipated. Up your fiber and fluid intake to the highest level during chemo, and keep that 64-ounces-daily fluid consumption going during radiation, even though you then will switch to a low fiber diet.

The long-term affects of the brachy radiation scared me the most, and I use a dilator daily now just to sure that my sexual function is not ever hampered by scar tissue. The dilator is really no big deal, no wierder than inserting a tampon. I have a routine where I get up early in the morning to urinate and pick up my dilator from the bathroom at that time. Then I just put it on my bed table and go back to sleep; and when I wake up again later that morning, I lubricate the dilator and slip it in and doze off for another 10 minutes, than take it to the bathroom with me to clean it and put it away again. (I don't like the pressure of the dilator when I have a full bladder, so this works for me. I'm amazed how often I fall back to sleep with the dilator in, just as you would with a tampon I guess.) The plus to this routine is that if my husband wakes up 'frisky', I am already lubricated and unafraid of any tearing or pain that I might have had if I hadn't used the dilator already that morning. That allows me to relax and enjoy myself. I can't tell you how much I worried about this process, as I treasure my sex life with my husband. Many of the women here decided to JUST use the 'natural method' of having intercourse 3 times a week with no dialtor. But I am glad I use the dilator as I was really mentally inhibited by my fear of painful sex, and I just don't need that worry along with the near-bald head, big new scar, and 15 extra chemo-pounds. And I wanted to be ready in case my husband got sick or either of us went out of town without the other and we weren't together for my 3-times-weekly 'physical therapy'.

With each aspect of this cancer-journey, the FEAR of the unknown has been the worst. The reality of each step has never been as bad as my imagination made it seem ahead of time. Very quickly you will find that waiting for test results is MUCH scarier than any treatments for the disease or even any side affects of the treatment. Once you've had the surgery, in my opinion, the worst is over.

DoreenB
Posts: 2
Joined: Oct 2009

I was just diagnosed with Uterine Cancer. I had my ct scan and go to the oncologist this coming Wednesday. I dont' really know anything other than I have cancer. You are right the waiting is horrible!! I read about what I could be in store for and it is sooo scary. No only am I going thru this I Lost my job over a year and a half ago, was on unemployment for that period. I was was forced to take a part time job since there isn't any thing else right now. I don't have any insurance and have no idea how I am going to pay for any of this. I just feel stress coming at me from all directions. I am also divorced so I am home alone most of the time. It isnt' good to be alone all the time. We think too much.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Doreen,

Sorry to hear of your diagnosis. You sound like you are facing some difficult challenges in addition to the Cancer. Please check out some Social Service resources who can help with your care. There is help out there but you need some advocates who can help you.

Stay in touch and let us know how you make out next week.

Laurie

howdybooth
Posts: 44
Joined: Aug 2009

How soonn after your surgery did you learn of the lymph nodes? My sister had sugery in Feb and everything was clean expect her uterus. With in 3 months it has spread to her vaganial cuff and possible that her nodes are also involved. Only talk right now is of radiation and not chemo. We are confused and scared since the radiation will not cure her and only shrink the cancer.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I had 25 lymph nodes removed at the time of my hysterectomy, solely for the purpose of studying them for any possible cancer spread. They found microscopic cancer cells in one of the 25, but it was already cut out of me so no further surgery or treatment was needed for the lymph nodes. So I knew of the involvement in that single lymph node a week after my surgery when I got my pathology report from the hysterectomy. All of my chemo and radiation was a PRECAUTION; I had/have NO visible residual cancer left in me. The chemo and radiation was to go after any stray cancer cells that may be hiding in me anywhere. UPSC is a sneaky aggressive cancer and you have to go after it with 'big guns' from the get-go before any stray cells start growing and make numerous tumours everywhere.

But does your sister have UPSC, or does she have one of the more common types of uterine cancers? (You need to ask for the GRADE and STAGE of her cancer.) UPSC is a very RARE variety, and if your sister doesn't have UPSC, all of the posts related to that type of cancer may be making you worry unnecessarily. None of the other types of uterine cancer are as aggressive and recurrent as UPSC. BIG HUGS!

hellokittymary
Posts: 2
Joined: Oct 2009

Hi. My name is Mary and i'm new to this site...I was dianosed after having a sonogram for a side pain in my right ribs about a month ago...After numerous tests and biopsies, they still aren't sure of the pimary so they are senidng me to City of Hope in L.A. county. They are pointing to the Uterus as the cause though, and said it has metastisized to the liver and bile duct of my pancreaus also two possible spots in my lungs...I'm 41 and very scared. I get my port in after his weekend to start chemo as this is supposed to be very aggressive cancer, so they said enough testing...They are putting me on Gemcitabine and Platinol...Has anyone ever heard of this? Thank you and God Bless you all.-Mary

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

Hang tough and take one step at a time. My girlfriend took the chemo and did fabulous; she taught school through it all and never had an ache, nausea, or constipation. Stangely, I developed the same cancer after she did. I had a reaction to taxol we managed with extra steroids and pain pills. One oncologist told me once that your reaction to chemo does notdetermine prognosis; for instance if you don't get sick it does not mean it is not working. If you get very sick it does not mean it is working better. Another thing for constipation which often comes from the nausea meds (I took aloxi) is to take reglan which will keep things moving along with miralax. You have been given good advice already and you will learn as you go. Often the first taxol is the hardest. Losing your hair isn't fun but you learn to cope with cute wigs and hats. Don't be afraid to take pain pills if you need them. I am in radiation now and learning to cope with it. Lean on loved ones. I also do guided imagery tapes from Health Journeys and it helps me to control my anxiety (along with ativan!)

Lisa 00
Posts: 108
Joined: Jul 2009

Colleen,
This is just a brief rundown of my chemo experience. If you have specific questions, please ask.
First, the generalizations. You will survive chemo better and more easily the younger you are when you have to take it. I think with age you get more neuropathy and more trouble with your blood counts. I could be wrong. I have just a bit of neuropathy in my hands and feet after the 6 rounds of carbo/taxol. My blood counts were always okay and I didn't have to delay any infusions.
I had long hair before this started. The doc told me to cut it as it would be "easier" to take losing it. I didn't cut it. When it started falling out I just pulled as much of it out as I could and then took clippers to my head and gave myself a buzz cut. You will slowly lose the small pieces of hair that hang on initially. Same for your eyebrows. Some will hang in there for a few weeks/months but you will be pretty bald in the eyebrow dept. toward infusion 5 and 6.
You will have 2 good days after an infusion. Then sickness for about 4 days. Then you'll feel okay until the next infusion. I gained only about 2 pounds during chemo.
I was never nautious. I didn't have problems with constipation because I didn't get problems with neuropathy. The two are related. But you should keep a laxative in the house. I did have some acid reflux and pepcid complete (or the equivalent at your drugstore or grocery store) worked GREAT. You might also want to keep on hand some of those urinary pain relief tablets in case you get a sudden urinary tract infection. I didn't get one, but those tablets are great if you do and you won't want to have to wait and go to the store to get them if you do need them.
Your skin will get very oily. I had some problems with being easily overheated when sleeping.
Drink lots of water during chemo especially the first week after an infusion. I took B vitamins, vitamin E and omega 3 fish oil to help with neuropathy.
Oh, I didn't have a port. They just did a new iv in my arm each time. The taxol went in fine the first time. But each time after that, the taxol would make my forearm ache like nobody's business. The nurses said that hardly ever happens but what they did was dilute the taxol even more with some saline. That and temporarily slowing the drip rate helped eliminate the pain. If you can, take advantage of the benadryl sleepiness and just sleep as much as you can through your 5 hour infusion time. Don't do what I did and drink coffee before an infusion because then I couldn't sleep and it made for a long 5 hours.
That's all I can think of right now. If you want to email me please do so. I don't know how to email someone from this site so i can't email you. Your initial post looked just like my experience. I haven't been hanging around this board much lately. Maybe needed a psychological break from talking about cancer. I'm sorry to hear that your diagnosis included lymph node involvement but hopefully the odds are still in your favor for eradicating this stuff from your body with the full treatment of chemo and radiation.
I'm currently in radiation treatment. There are places I'd rather be, but it isn't too bad.
Take care,
Lisa

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I had breast cancer ten years ago; I brought my wig to a beauty shop and had them shave my hair and then popped the wig on. I couldn't take having my hair slowly fall out; This was easy and less traumatic for me. I know some women like to just let it fall out slowly; I thought that was too depressing. I liked the instant transition.

My friend had cancer and thought she only had 15 months to live. (Strange I got UPSC after she did). She went in and told the Doctor she was just going to refuse treatment and die; she didn't want to lose her hair. "I'll do anything they ask but I can't lose my hair." I offered to go look for wigs but she refused. Her husband yelled at me about how women are so vane. Everyone was stressed out. (Actually her aunt had a similar experience but hair never grew back. This is very rare). She called me one morning and asked to go shopping for wigs. We found her the cutest wig I have ever seen and she looked fabulous. She wore it all the time. Once she completed treatment she kept wearing her wig. I asked her if her hair was growing back. She said yes. But I don't want it to. I like being bald. you don't have to get your hair done. It's so easy. You pop on the wig and look good every day." I laughed at her response. When I had hot flashes after my shower I sat under the ceiling fan with my bald head and air dryed it. It tingled with a great zip and on a hot summer day was a fun thing to do. I don't really like baldness but I fight it with cute outfits and hats and wigs. I can't figure out the scarf thing. I draw in my eyebrows and line my eyes for a little pick up on the face.

I was also advised to buy a wig before the hair falls out so color matches. Also advised to get hair cut shorter; buy a short wig, because then when it comes back in the change is not so drastic. I don't think that really matters anymore. Some women today get some cute big earrings and just go bald. Some wear a different color wig every day.

susie1143's picture
susie1143
Posts: 109
Joined: Aug 2009

Hi Songflower:

I'm newly diagnosed and am having my surgery on Aug 26th. At this time, we're not sure if I need chemo but my cell is Grade 3 and since this is an agressive cell I'll probably need chemo and radiation. I'm not a stranger to the effects of chemo since I've been a caretaker for my mother and aunt. With both of them we went together and had a wig buying party. Both had there hair shaved prior to it falling out. I also plan on doing the same. Luckily, my hair has always been short so I'm going to have a friend shave it right before my first chemo. I already have 2 wigs, scarfs and covers. My husband thinks I'm crazy because I'm worried more about losing my hair than any of the other problems due to chemo. My mother's chemo was the same that is used for this cancer so she has given my some pointers. I also appreciate this site in preparing me for any upcoming treatment. One pointer that my Mom told me is to eat popsicles during chemo to help prevent mouth sores. Also, she was given shots (not sure of the name) to prevent a low blood count. She never missed one treatment and has been in remission for 6 years from breast cancer.
Thanks again all of you for sharing your experiences!
Susie

california_artist
Posts: 850
Joined: Jan 2009

Good morning,

It heartens me that no matter the subject you are warm, informative and caring in your resonse. I just came across this post and as we all do, I wanted more information about the mention of your friends cancer outcome, aside from the lovely wig story. The question of course is, is she still doing alright? And if not, what happened. If it's not a painful subject. We all learn from other's experiences, good outcome or not.

Love,

Claudia

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Colleen - sorry to hear about your new trauma. You've gotten tons of info on chemo - and my experience was very similar. However, I wish I had know more about radiation and its long term side effects. There are various intensities - if I had to do it over again, I would have become more informed about the intensity of the radiation and gone with a lower dose. It's better to understand all of it and not just leave those decisions up to the doctor.

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