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brachy/Deanna

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Deanna, I just happened to see your discussion on another site where the internal radiation topic came up. It is amazing how mine and yours were different. I did not have the catheters in the simulation or during the actual radiation. How awful for you. I did have some barrium during the simulation, but other than that I just had the vaginal 'pack' proceedure for the 3 sessions. I am curious if any of the others had such a difference in the proceedure. It is much to degrading and invasive but if it keeps us alive .... bring it on!!... .. God bless us all through the thick and the thin of this dreaded disease!!

deanna14
Posts: 738
Joined: Oct 2008

I kind of get on a soapbox about the internal radiation. As a medical professional myself, I know it is easy to get into the day to day of your job and temporarily "forget" you are dealing with a lot of feelings and emotions. I think we should be told very graphically and vividly what it going to happen, then it wouldn't be so scary!

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

Each day brings me closer to my radiation treatments, especially now that it looks like my body isn't going to allow me to finish all 6 rounds of chemo. I admit to worrying about the brachy. Not just the humiliation and degradation of it, but what it might do to my sex life long-term. But it has to be done. I know that. Don't like it, but plan to do it. I'll let you know the gory details once I get to that stage. I'm so glad I know what it will be like, going in. No one at my cancer center has said anything at all about what it will be like or what it might do to me long-term. I'm so grateful I have you to allow me to be as emotionally prepared as possible; I do better when I am not surprised.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Linda; I have been through it once, and if I could I would do it for you. I know it would not be as 'bad' ...unknowing ? the second time because I know the routine. As I was going through the brachy simulation I kept waiting for the 'bad' part. It was not bad at all except for the emotional invasion. Just pressure internally. Not pain. No pain ever. I was also lucky to have all young women working on me for the simulation and the only male I had to deal with was the Dr. Even then he had his nurses 'unpack' me so I only had to see him for the simulation and once to start each session. He was the Dr that found the total trial information for me. I feel like he may have been the Dr that saved me from a higher recurrence percentage by letting me stay on track with the aggressive treatments. He was just getting ready to retire when he helped me through the clinical trial. I often think I will write him a letter and let him know I am still hanging around!! Clear your mind of worry about the brachy proceedure. This too shall pass. Life is good and we are going to keep it that way. PS There isn't even any needles in this proceedure!!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Knowledge is power for us. It is so good to be able to know what is coming to boost our strength. Who is still left here of our sisters to have brachy? I so hope they do not have the nasty kind of proceedures you did. Mine were bad enough!! Do you suppose it had something to do with the 'range' our original tumors were in? It seems like they were setting yours up in an exact area compared to mine. ?? The good thing is... we are on the right side of that proceedure now and have moved on !! I think about you and some of the hair difficulties I had. Our friends always wanted to go out and dance the season I had no hair. I could not do it! I just could not feel like I could get out on the dance floor and boogy!! I could just see my wig landing on the next persons head or flying into cyberland!! Oh well, I now have hair and soon yours will be back in all its glory! God bless.

cookie1948
Posts: 79
Joined: Feb 2009

Hello,
I have been reading online on the discussion boards. I have never heard of all of these treatments people are mentioning. My mom is 85 and having total hysterectomy in the next 2 weeks due to the serous carcinoma. I was told that if it is contained there and depending on what stage it is she won't need chemo, besides my mom does not want chemo. She is in good health otherwise and is pretty strong for an 85 yr old woman. Is everyone having extensive chemo and internal radiation because this uterine disease had spread or a different diagnosis?
thanks so much.
Linda aka Cookie

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

First, has your mother's cancer definitely been identified as Uterine Papillary Serous Carcinoma? If your mother has the more common type of uterine cancer that accounts for 90% of all uterine cancers, then most of this does NOT apply to your mother. But if she has UPSC, then what I tell you comes from my heart, and I tell this to you with deep compassion because I know it is not what you are hoping to hear. Uterine Papillary Serous Carcinoma is such an aggressive cancer. You will want to encourage your mother, if she has the physical strength, to be open-minded to having chemo and radiation if recommended. Recurrence rates for UPSC are VERY high for those who don't push on and get the chemo and rads.

You ask if the UPSC Sisters posting in this thread are dealing with a recurrence. No. All but 1 of the UPSC Sisters posting here went right from having their hysterectomy into either chemo or radiation treatment 4 or 5 weeks following their surgery.

Your mother's cancer won't really be definitively 'staged' until she has her hysterectomy. Please make sure that she is also having lymph nodes removed along with the hysterectomy as this is critical to having her cancer properly staged. Her surgery needs to be done by a gynecologic oncologist, not just a gynecologist. Staging defines what additional treatment will be needed. If the tissue analysis following your mother's surgery shows her to be Stage 1, she may be spared the chemo and radiation. But if her surgery pathology shows that she is Stage II, III, or IV, you should prepare yourself for a recommendation by your oncologist for additional treatments for your mother like chemo and radiation.

Whether you feel you should forewarn your mother is your decision. She may need to just focus on mentally preparing herself for her hysterectomy right now. (When I had my surgery in October 2008, I had no idea I'd have to have chemo a month later. Sometimes ignorance is bliss! But I will tell you that I did a lot of research into UPSC prior to my surgery and was prepared to FIGHT to get chemo if it wasn't recommended, even if I was Stage 1. But, as it turned out, chemo and radiation were both recommended for me.)

The treatment recommendation usually is made at your first post-surgery check-up with your surgeon, who would refer your mother to oncologists that specialize in chemo or radiation to help you make decisions on additional treatment if needed. ((((Cookie / Linda))))

cookie1948
Posts: 79
Joined: Feb 2009

Hi Linda,
Thanks so much for the info, you're right it's not what i wanted to hear, but the gynecologist/oncologist just mentioned uterine serous carcinoma. so i just don't know, i did not hear the word papillary. I will find out more soon i hope.

cookie1948
Posts: 79
Joined: Feb 2009

Hi again Linda
I just found out my mom's ca125 is 15.1 which i was told is normal range, so maybe she does not have ovarian cancer also? we'll see, i hope for the best for my mom and ALL OF YOU.
Linda (cookie)

cookie1948
Posts: 79
Joined: Feb 2009

I am sure this is the disease my mom has, as the oncologist said it was aggressive. Thanks for all of your info.
Linda

Kris Ann
Posts: 26
Joined: Jan 2009

Hi Ladies, I have a couple of questions..

First of all I finally told my mother Judy that I joined this website and that I correspond with you all.. she was glad. She just can't do it herself in her mind the less she knows the better..

She is all done treatment and is getting a check up on Feb.25. During radiation she dropped a lot of weight she became very very thin, she was thin to begin with. She had whole abdominal radiation as well as 4 rounds of brachy.. so my questions are did anyone lose a lot of weight from the radiation? And also she still has diarhea sometimes and stomach twinges alot.. has anyone experienced anything like this from radiation? She wanted me to ask you all..

Thanks, kris Ann

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

Hi, Kris Ann! Peggy, Deanna, and Marge (and maybe some of the others) may be able to answer you better, as they have had their radiation already. But I don't think any of them had full abdominal radiation like your mother (instead they had pelvic radiation, which is similar but not as hard on the intestines). But I was warned, and am repeatedly reminded, throughout my chemo, that I cannot afford to lose any weight now as they anticipate a fairly significant weight loss and diarhea when I get my radiation. Oncologists worry about radiation for thin people. (I am 5'7" tall and weighed 125 lbs. when I started chemo.) I have ALWAYS watched what I eat, and went to the gym daily before I got cancer, and now that everyone encourages me to eat, eat, eat, I guess I've taken it to heart! I've gained 13 pounds in the past 6 months. (YES: 13 POUNDS!!) Now watch, I won't lose an ounce with the radiation and have to diet after my treatment is over.

Can your mother drink the high-calorie Boost or Ensure? I know people getting radiation that drank 4 or 5 cans/bottles daily to try and keep their weight up.

Evelyn G
Posts: 21
Joined: Apr 2009

Hello. I'm new to this site and I sure could use some advice.

On November 19 I had a total hysterectomy. Turned out to be liomyosarcoma, stage 1C. During the surgery, which started out to be robotic, the doctor nicked the fibroid and it oozed. She used a spoon, bagged it and converted to a standard hysterectomy. Since there could possibly be microscopic cells, I started chemo around Christmas. After only three of six rounds, I had to discontinue treatment because of extreme toxicity. The last chemo was Feb. 9 and I'm just now starting to feel better. (No washings were done and I was told the lymph nodes were clear, although they were not tested. I supposedly had the two best doctors in the area.)

My gyn. oncologist said radiation would not be beneficial. I consulted with two other doctors. One wanted to do six weeks, five days of external radiation. Another suggested HDR bracytherapy. That would be three once-a-week treatments.

Anyone have any input?

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I was told by my gyne and the OB/ONOC that because I had no symptoms, and a pap test caught the suspicious for adenocarcinoma cells a hysterectomy would probably take care of the problem. When I had the hysterectomy my tumor was so small 1.5cm by 1cm and it only invaded 50% of the uterus lining, but it had spread to 5 of 20 lymph nodes and I had metastic cells in my abdominal washing. So until they do the surgery, they really don't know what stage the cancer is in. They need to check the lymph nodes, to for spread.
Because serous cancer is so aggressive is why the chemo and radiation are recommended. They want to kill any microscopic cancer that may still be there. The chemo goes through the blood stream and goes through out the body. The radiation focuses on the area where the cancer cells may remain.
When my ONOC first explained my treatment plan he mentioned pelvic radiation for 5 -6 weeks. When I went after my first chemo treatment, I asked if internal radiation would be done also, after reading so many USPC sisters have had or are having internal radiation also. He said that is up to the radiation onocologist. So I won't know until I meet with him what I will have.
I too am having the sandwich treatment of 3 chemo treatments, then radiation treatments, and then 3 chemo treatments. There will be a 3 -4 week rest period between each session of treatments, so it will be a long process. I had my surgery January 5th and my first chemo treatment January 29. I too am in good health with only high cholesterol. So it is so hard to understand how I have such a serious disease. I feel so good.

cookie1948
Posts: 79
Joined: Feb 2009

Hi there,
Thanks for the info but u are right, not what i wanted to hear. mom is 85 but i am scared for her. I know she doesn't want chemo, but we'll see. I still can't believe she has this aggressive cancer, none in the family at all, but i guess the other gals are right, cancer knows no age and has no boundaries. Did you also have the CA125 test? RO10? hers was 15.1 and i was told 0-35 is normal. I hope to God they check the lymph nodes and will bring that up next week when i take her to her appt to schedule hysterectomy. As i have said before, i haven't heard of too many women this age in her eighties to get this type of cancer, but then who knows how long it's been there.
Again, thank you all for the info. I wish you all the best and i do have one more question, as dumb as it may seem being that i'm new here. What does NED stand for?
Linda aka Cookie
God Bless...........................

cookie1948
Posts: 79
Joined: Feb 2009

How was the hysterectomy itself Ro10? May i ask how old you are? I bet you have a great chance of being disease free with your attitude and how you feel health wise in general. I just don't know how much my mom would be able to take at this point. I think she's already a little discouraged as she had no idea any of this was going on til she had some spotting for a week and then had 2 biopsies and scraping. no sign of cervical cancer but the endometrial lining and uterus showed the cancer. I think she is slowly getting over the surprise of this.
I thank you again and hope i get posted on how you are feeling.
God Bless you and i wish you all the best. Prayers go out to all of you..............:)

cookie1948
Posts: 79
Joined: Feb 2009

abdominal washing? Is that what they do during the hysterectomy to find cancer cells? I am not fully understanding all of this as yet. What actually does metastic cells mean? And what is an abdominal washing?
thanks again.

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

You asked about NED. That is short for 'No Evidence of Disease', and is the determination we all hope and pray to get with every CT-scan (which your mother will probably have every 3 months for at least the next 2 years). If you have a NED CT-scan (which we lovingly call "dancing with NED") and a CA-125 of less than 35, although you may still be getting chemo and radiation, you are technically in remission. Most of the UPSC Sisters posting here currently are dancing with NED, and have CA-125's under 35, and yet we push on with our treatments as long as we can in the hopes of killing off any hiding cancer cells. Then, after your scheduled chemo/radiation treatment is completed, every 3 months you go for updated CA-125 bloodwork and a CT-Scan and hold your breath until you know that you still have NED and that your CA-125 is not rising. Because if your CA-125 rises and/or your CT-scan shows a shadow or small tumor, it could be time to go back into treatment as you may have a recurrance.

You asked about abdominal washings. During your mother's hysterectomy, they will actually irrigate the cavity left from the removal of her uterus with some type of fluid, and then suction off and test that liquid for any traces of cancer cells. This serves a dual purpose; it is a part of the 'debulking' where every effort is being made during surgery to remove every single cancer cell, and it is also a diagnostic tool. Because when cancer cells are found in the 'washings', it can be an indicator that the tumor or polyp is exfoliating cells and that microscopic cells may be on the move in your body. I think that when cancer cells are found in the washings that radiation in that area is usually prescribed.

I also wanted to share with you that my cancer was also found during a routine annual PAP test. I didn't even have any spotting, NOTHING, absolutely no symptoms, seemingly healthy as a horse. I was told uterine cancer is never found during a Pap test, and yet several of the UPSC Sisters first found their cancer that way. From what I've read, this type of rare uterine cancer seems prone to exfoliating cells (which is why one of the wandering uterine cancer cells can show up down there to be picked up by a PAP test, and why your mother may have cancer cells in her abdominal washing. I did. You find this out after they do the pathology on the tissue they remove during the surgery. Although my gynecologist and gynecologic oncologist were both so sure we had caught this super-early, (because I had no symptoms), one of the 20 lymph nodes they removed had microscopic traces of the cancer cells, and so I was diagnosed as Stage III-c. Chemo works to kill the microscopic cancer cells that may be traveling and hiding anywhere in your body. With radiation they go after the most likely place they may be hiding.

If the pathology from your mother's hysterectomy shows any indication that her cancer may be on the move, a normal CA-125 and NED CT-scan shouldn't stop her from having the chemo and radiation as a precaution. You want to be informed, so that you can help your mother makes good decisions, but please don't look too far ahead in the process. The hysterectomy is the hardest part, so for now, focus on getting your mother through that. When the pathology report comes back from her surgery, request a copy as you will need that to help you decide what to do. Your oncologist will go over the pathology and make his recommendations. We'll all be here to help you sort it out. BIG HUGS. Try not to worry about all that yet. 1 step at a time.

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

You asked about metastic cells: these are cancer cells that are on the move. When someone posts that they have 'mets to the lungs', they mean that their existing cancer has travelled to a remote place in their body (in this example the cancer has metasticized in the lungs) and now you have a new cancer to deal with. No matter where a uterine cancer metasticizes (lungs, brain, vaginal cuff, peritoneal cavity, etc.) and starts to grow, it is considered a recurrance of uterine cancer, but just in another body part.

It's like learning a new language, isn't it? I never knew what any of this stuff really meant 6 months ago either. You'll be amazed how much you'll learn during this journey with your mother.

cookie1948
Posts: 79
Joined: Feb 2009

Linda,
Thanks again so much for all of the explanations of terms and things i am asking about. As my tears roll down in being scared for my mom and gratefulness to you and everyone for being so patient with me for all of my questions. I am soooooooooo hopeful for you and everyone else, because no one deserves cancer!! And you all are doing so much good for everyone concerned. I guess i kept thinking and hoping it has not spread. My mom at 85 enjoys life and wants to live no matter what, but she is very scared. Her ca125 was 15.1 last week, so at least that was not elevated. I know we are not home-free, but i thought about what you said about just getting her through the hysterectomy. I hope they don't wait too long. I take her Monday morning to see if they will clear her for surgery and then with oncologist for pre op. I hope it's soon, altho like she said, it's hard to feel good now and then knows she will be uncomfortable after the surgery.
I thank you from the bottom of my heart. May God Bless you, keep you well SOON and forever. NED forever. I GET IT NOW. lol
Linda aka Cookie

Reddie's picture
Reddie
Posts: 72
Joined: May 2009

Hi Ro10,

Can u tell me what is "sandwich treatment"?

thanks! Reddie

deanna14
Posts: 738
Joined: Oct 2008

Some people have their treatments sandwiched. It just means that they give a certain number of chemo treatments, then do the radiation and then finish up with the remainder of the chemo treatments.
Some people even have some chemo and radiation together.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

We had three chemo treatments and then our external and internal radiation. Then we will finish up with 3 more chemo treatments. We had a rest period between the chemo and radiation, and the another rest period before the last chemo. I don't know if breaking up the chemo is easier on the blood counts, or if they hope to kill any wandering cells that the radiation did not kill. I just pray that it is all working. Hope your treatment goes well.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I am 60 years old. I too had an abnormal pap test with no symptoms, just like Linda. They felt they had caught the cancer early. On January 5 I had a robotic hysterectomy with removal of tubes, ovaries, 20 lymph nodes and an omental biopsy. My surgery was 6 hours long due to previous scar tissue from previous c-sections. I recovered very well from the surgery. Becuase of the type of surgery I had, I could get my first chemo treatmetn on january 29. I just had my first CA125 before my second chemo. I was quite discouraged as it was 435. The doctor said it would be elevated from the surgery, but I don't think it should be that elevated. So that does scare me. I can only pray that it will drop with the treatments. I can understand how you are frightened for your Mother, just as she is frightened herself. It is a scary disease.
I pray for you as you make your decisions. I think Linda answered most of your other questions. She answers everythins so well, she is very well informed. She is a real asset to this discussion board. Thanks Linda. Cookie if we can answer anything else for you just ask. Hugs to all.

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

Hi, Evelyn! I don't know much about your specific type of cancer, but wanted to reply and hope you can educate me more about it. I am at a similar juncture as you, as my radiation is coming up soon. I assumed all along that it would be 5 weeks of extrenal pelvic, followed by 3 weeks of internal vaginal. I had a radical hysterectomy October 10, 2008, and finished up the last of 6 rounds of chemo (Carboplatin / pacitaxol) late March 2009. So as soon as my blood work shows I am strong enough to start radiation, I will meet with the radiation oncologist and see what he recommends. Because I have had some trouble keeping my white, red, and platelets up a safe levels (and had to have 2 blood transfusions and 4 1/2 weeks of chemo delays over the course of the 6 rounds of chemo), I hope to have the internal radiation first since I am afraid my bone marrow won't hold up for the 5 weeks of extrenal radiation. I tried to have my radiation 'sandwiched' between my 3rd and 4th rounnds of chemo, but they wouldn't go for it. They seemed to think it was vital that I get all 6 rounds of chemo in, and feared the radiation would affect my bone marrow too much. I'm not sure whether that decision was based on my cancer stage (Stage 3-C), my lifelong history of mild anemia, or the fact that I have always been thin, or what. So I don't yet know what my radiation treatment will be. But if you have the time to read the LONGEST thread on this Board, we have discussed radiation in great detail, and many of the women here have shared their experiences.

shortmarge
Posts: 296
Joined: Nov 2008

Sorry to hear that you are going through all of this. I was Stage IIA and had only the internal radiation (3 times in a week). I was told that is the first place the cancer likes to return; in the vaginal cuff area.

Linda, interesting to see that you have had a history of mild anemia all of you life. Me too. I think it would be interesting to put a survey together to see what other likeness we might have.

MIND, BODY AND SOUL!

Hugs.

Evelyn G
Posts: 21
Joined: Apr 2009

Hi Gals,

Shortmarge, thank you for responding. What type of cancer did you have?

Lindaprocopio, My surgery was Nov. 19 and was to be by robotics. But the surgeon nicked the fibroid and it oozed. The surgeon used the laprascopic spoon and converted to the standard north/south incision (ouch!). Since microscopic leiomyosarcoma cells may have remained, it was recommended that I have six rounds of chemo--one week gemcitabeen, second docetaxel and gemcitabeen, the none the third week (three weeks = one round). I had white cell blood injections after the second and third rounds (shots were $15,000 each!). I had one red blood cell injection after third round. Wasn't enough as I wound up in the hospital Valentine weekend. I had two units of blood and sent home on Monday. On Friday the oncologist took one look at me and said I was extremely toxic (after three rounds). I had to take the steroid med pack. It mildly cleared up the toxicity but I am just now beginning to regain my strength. The gyn. oncologist felt radiation wouldn't help. A second opinion at the UofM suggested six weeks, five days of external radiation. With my Stage 1C, I think that is kind of drastic. My friend had a hysterectomy two weeks after me but had a different kind of cancer. She had three treatments during three weeks of HDRB and no chemo. I went to her radiation doc and he would do the same for me. Thursday I'm getting yet another gyn onc. opinion. I'm scheduled for the first HDRB Friday. So this week will be busy and full of decisions.

One thing about external radiation is that it could damage your colon or bladder. That's what I've been told. But with your Stage 3C, I don't think you have much choice. Good luck!

Evelyn G

deanna14
Posts: 738
Joined: Oct 2008

I was just curious what type of cancer you have and what stage it is. All of this information makes a huge difference in the type of treatment that you should be receiving for your cancer. A lot of us on here have uterine papillary serous carcinoma which is a highly reoccurent and aggressive form of uterine cancer. I tends to act more like an ovarian cancer, thus, the goal is to throw the book at it in the beginning and go for the cure as reoccurences are much more difficult to work with. Anyway, the initial recommended treatment in most cases of UPSC is 25 external beam pelvic radiation and 3 internal high dose vaginal radiation treatments. The most common site of reoccurence is the top of the vaginal cuff. Chemotherapy of carboplatin and taxol every 21 days for 6 cycle is also the most accepted practice. There are variations some people "sandwich" 3 chemos then radiation, then finishing 3 chemos. Others do all chemo first and then radiation and vice versa.
If you have Stage I C uterine cancer, perhaps the treatment being recommonded would be drastic, however, if you are dealing with UPSC, the more agressive that treatment, the better.
I hope that you get well seen. Take care and God Bless.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

We have made it back to Illinois and I met with the radiation onocologist today. He recommends 5 - 5 1/2 weeks of external pelvic radiation and then one internal radiation treatment which I will need to be hospitalized for a few days. He said they do not do the internal radiation as an out-patient at this cancer center. I know Teresa talked about having to go into the hospital for her internal radiation. We have not heard from Theresa since she started radiation therapy. I hope she is doing okay.
They did a scan and then the markings today, and I guess what Linda referred to as a "butt mold" today. I will start my radiation treatments on Wednesday. This doctor said my blood counts would not be affected very much by the radiation treatments as the radiation is so focused to the area it is needed. I don't know if this is because my blood counts are very good to start with. He said I would need a full bladder when the treatments are done. This will be accomplished by drinking lots of fluids. They just got a new machine and it is a top of the line machine for radiation therapy. I hope it is all going to work. I want to have NED like so many of you have.

Evelyn G
Posts: 21
Joined: Apr 2009

Here in Cleveland internal radiation is done in six minutes. I'm told there are minimal side effects such as diarrhea for a day and possibly some itching. He said I can drive myself there and home again. It's generally tolerated well. In my case, the area covered would be 3-1/2 cm.

Evelyn G

deanna14
Posts: 738
Joined: Oct 2008

Where are you at in Illinois. I live in Missouri... Springfield area. I am glad you are back and have a plan for your radiation. I bet you are relieved to have some concrete for the next leg of your journey. Radiation is not too bad. Listen to the full bladder advise. I did that, but I am just now starting have some difficulty with my bladder leaking. They tell me that it is from the scarring to the bladder from radiation. The bladder, I guess becomes less elastic and shrink, creating small bladder capacity. I am having leaking if my bladder becomes to full. This is particulary happening at night while sleeping, pretty humiliating. Then tell me that it will get better as I become more in tune with the "new sensation."
As far as the blood counts, they checked them before my first treatment and then not again until radiation was complete and I was ready to start chemo. You probably won't have any problem. You didn't with your first 3 chemos!
Soon, very soon Ro... we are all going to be NED together. Won't that be wonderful!
Good luch with your radiation, I will be thinking about you!

PS... I finally got chemo #4 today. My magnesium was low, but they just gave me some IV (took 4 hours). They also said they had thrown the book at me on the first 3 treatments, so they lowered my carboplatin by 1/3. I'm thinkin I'll probably end up with a 7th treatment because of the lower dose, but what's one more?! As long as I get NED and he stays! lol
Love,
Deanna

shortmarge
Posts: 296
Joined: Nov 2008

I HAD UPSC and clear cell carcinoma. My doctor told me that it only took eight minutes also but you do have set up time and making sure all is right so it takes a total of about 30 to 35 minutes. I drove myself there and back, which I probably shouldn't have since I was in the middle of having chemo treatments and my balance was sooooo off. It doesn't hurt it's just humilating but you gotta do what you gotta do!

Deanna about the bladder, I had that problem too. When I had to go I had to go, get out of my way. But now all is back to normal, even better then before the surgery, I think I might be able to jump rope with my grandkids without wetting myself :)! I'm just still having problems with the pain in my ankles and my hips; which I think is due more to the radiation then the chemo.

Ro, hang in there it will be all over before you know it. Like Deanna says we will all be NED!

MIND, BODY AND SOUL!

Hugs.

deanna14
Posts: 738
Joined: Oct 2008

Marge, I so hope my bladder improves like yours! I guess there are side effects that could be a lot worse, but I still hope as time goes on that I won't have to worry about wetting myself! I also have the hip discomfort, although not all of the time. It seems to come and go. My low back and hips just seem to be very sore and stiff as if I have exercised, which I have not yet started doing yet. Other than walking, I try to take a walk most days. I do have aching in my feet, ankles and lower legs, but only after the Neulasta injection for about a week.

Evelyn,
I agree with Marge. You should be able to drive yourself. They don't give you any medication, although I think it might be less humiliating if they gave you a good dose of valium or xanax! lol. The nature of it is humliating, but it has to be done. One of those things you just have to hold your head up high and get it over with! Good luck and take care.

Hugs to all,
Deanna

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

We are quite a distance from each other. My sisters and I have had "sister's get-a-ways" in Branson Missouri mamy times, so I have been to Springfield Missouri when we were at Branson. The doctor told me the full bladder is to push the small bowel away and cause less side effects from the radiation. He said the bladder side effects could be treated. Peggy talked about how important it was to have good fluid intake while taking the radiation therapy. I guess that won't be a problem with a full bladder every day. I feel for you with the leaking problem. I had my blood drawn today and will have it rechecked every 2 weeks. The doctor said since I had chemo already they would check the blood count.
I am glad you were able to get your 4th chemo. I hope you are feeling okay after this treatment. I am surprised your Magnesium was low. I don't know that I have had my magnesium checked with the blood work. They told me the carbo dosage was based on your creatine clearance. My first dose was higher than my second and third doses (which were the same dosage). I did not see that much difference in the creatine clearance in the lab results, but they individualize the dosages for everyone. Wishing that we all get to have NED. Take care of yourself and get the rest you need. HUGs to you.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Good luck with your radiation tomorrow Ro. I will be having my last of 25 external radiations tomorrow. I have had nausea everyday from the start of radiation.It starts 2 hours before treatment and last a couple of hours after treatment.I'am really sensitive to smells and just the smell of the hospital, (like rotten apples) makes me sick, so I believe alot of it is mental.Have suffered with diarrea since the 2nd week of treatment. Imodium helps plus I keep Tucks in the upstairs and downstairs bathrooms to ease the burn. I will be admitted in the hospital April 21st for the Cesium Implant and will have to be there from between 1 and 4 days.This hospital like yours does not do out patient internal radiation. (BUMMER).I will give you the details when I get home from the hospital.
Again, good luck with your external radiation Ro, I'll be thinking of you.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I've been wondering how you have been doing. I am glad you are finished with your external radiation treatments. Sorry to hear about your nausea everyday. That is not fun. Sorry about the diarrhea, too. The second week of treatment is what most people have said they experienced. Did you follow a low fiber diet when the diarrhea started? That will be hard for me as I eat a lot of fiber right now with fresh fruits and vegetables. But if it helps with the diarrhea I'll do my best to follow a low fiber diet. What about fatigue? Did you have much fatigue with the radiation treatments. Have you been able to care for your daughter like you did before. I hope you have been able to.

Did you get arrangements made for your daughter when you are in the hospital. Does the hospital you are going to have any type of "Repite" room? This is where people who need care can stay while their caregivers are in the hospital, or just need a break from caregiving.
My first treatment went well. One down, 27 more to go. I did not know if there would be a break between the external and internal radiation. But I see it is almost a 2 week break for you. Will you have a rest period before you start your last chemo treatments? I have not asked those questions yet. I don't know if it depends on what blood counts are when you can start chemo again. Did your hair start to grow back while you were off chemo. I wondered if mine would start to come back, and then fall out more quickly the second time. I'll be anxious to hear how you internal radiation goes. Thanks for keeping me informed. Take care of yourself. HUGS to you.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Ro, I pretty much have been eating whatever I want. Seems I get into trouble with diarrhea when I eat to much at one time. My last chemo was Feb.17th, my hair has grown out a little but not much. I imagine when I have my 4th chemo, should be sometime in May, I'll lose it again. So far I haven't lost my eyebrows or eyelashes so I'am happy about that.
My energy level does seem a little bit low , but not too bad to deal with, just take more naps. I haven't had any trouble at all taking care of Julie. She's been a real trooper through all this mess.
When I go into the hospital for the cesium implant my husband, son and daughter-in-law will be dealing with her care.
Hope radiation goes by fast for you and you don't have any bad side effects. I think the only reason I have a break between radiations is because they only do the implants on Tuesday's and April 21st was their next available opening.
Take Care... Teresa

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

I woke up crying last night for the first time in a LONG time. I think it was actually setting the appointments for my post-chemo CT-scan (this Friday!) and consultation with the radiation oncologist (on Monday.) I am also probably at my nadir point with my blood counts and I think that makes me emotional. (I'll find that out Thursday when I go for my 'safety check' blood work.) I wish I weren't so afraid of the long-term radiation side affects. I am so anxious to get this done and be 'out of treatment' after all these many many months. So a big part of me is eager to get the radiation started. But I mourn the possible loss of my easy natural sex life and perfect digestion, and a leaking bladder and painful sex sound so very grim. I plan to use the dilators and get myself back to normal as quickly as I can! I don't think I have a choice about having this, with my Stage III-c UPSC, but I can understand why women with Stage 1 or 2 would decide against it, and roll the dice. I am so grateful that Marge's bladder problems corrected themselves with a little time, and I will hang onto that hopeful outcome. Thanks so much for sharing your experiences!!! My tears always make my husband cry too, so I am glad I can usually keep a good attitude and not give in to self-pity and fear.

Did you hit 'refresh' to see my new little Easter bunny? It's not a very clear photo. I bought him on Sunday and he's like a little kitten how he sits on my lap to be petted. I plan for him to live outside in the hutch in my garden, but while he is so little, I have him in an indoor hutch by my computer so that I can play him. It's a comfort to have a soft little animal to pet, and my grandkids and husband just love him.

deanna14
Posts: 738
Joined: Oct 2008

Linda, once again, I think the fear of the unknown is the worst. I think you will find that radiation is a breeze compared to chemo! You are in good shape and healthy other than this stupid cancer (which is gone, remember!). You will get through this with flying colors. I personally think that crying is good for you. Nothing wrong with a good cleansing cry once in a while! I tend to have a sort of fussy digestive system and I can honestly say my digestive system is back to normal. Actually probably much better than before surgery. Except of course during the immediate post chemo days. Before my surgery, I was constipated ALL the time, now I am really very normal even after radiation. As far as the sex life, I believe that my lack of want to is due to the hormonal changes, not the radiation. You can use the dilators, or you can just use the natural method. I prefer the natural method myself... think of it as therapy! Everything that I have read encourages two to four times a week! I have not used the dilators, only the natural method and I don't have any trouble. If you are not having libido problems now, you will be fine. As I said, my troubles are menopausal, lack of libido. If anyone finds any methods of dealing with this without estrogen or phytoestrogens, please share! Keep your chin up Linda and your positive attitude! Remember we are NED!

I love that little easter bunny! We had bunnies for a while, it makes me want another one. Having it in your garden is an excellent idea. I might actually be able to talk my husband into letting me have one for the garden. Your granddaughter is beautiful!
Take care and stay strong.
I am here for you always, Deanna

shortmarge
Posts: 296
Joined: Nov 2008

Linda, go ahead and cry, it'll make you feel better. It's just so overwhelming when you have to see doctor after doctor and test after test and you just want it to all be over. It will be, soon and I don't think you should worry, NED IS your best friend! Your Granddaughter is beautiful!

I did not use a dilator; as a matter of fact the doctor didn't even ask if I wanted one. It didn't hurt to have intercourse but afterwards it was uncomfortable. Now, no problem. Physical Therapy has gotten to be fun! Sure it's not the same, takes a little more to get the juices flowing, but it's all good.

Y'all are in my prayers and I'm thinking about you everyday.

MIND, BODY AND SOUL!!!!!

Hugs.

P.S. I made an appointment to have a massage on Friday; I can't wait. Maybe it will help my back and ankles plus I like the thought of spoiling myself instead of everyone else.

deanna14
Posts: 738
Joined: Oct 2008

A massage is a great idea, as is treating yourself! I had a GC for a facial from some friends and I went last week. It was so relaxing and makes you feel spoiled for a little while. I also have a GC for a 90 minute pedicure and manicure that I got as a bridal shower gift. I am saving it for a celebration after I finish chemo!

Enjoy that massage and pampering yourself for a while!

Evelyn G
Posts: 21
Joined: Apr 2009

Hi Gals,

Deanna, lieomyosarcoma is a very rare and aggressive form of cancer. Finding statistics on survival after treatment is impossible. Lieomyosarcoma is a rapid growing cancerous uterine fibroid. It grew over 2 cm in a month. I guess I should go with the aggressive treatment. Better to err on the side of caution.

I'm amazed that two of you comment about the cells clustering around the vaginal cuff. My famous doctor never heard of that! How many more of you know that?

I was told the HDR bracytherapy has few side affects. Maybe diarrhea and itching. Nothing was said about having a full bladder for the procedure nor bladder problems afterward. I'm being treated by two world class hospitals!

Linda, I was crying a lot and my family doctor prescribed Lexapro. It really helps, but after a few weeks I cut the pill in half. Still works good. Your bunny is adorable. What's it's name? We had dutch rabbits when our children were little. When you put it in the garden, make sure the hutch is high enough as an animal (maybe a big dog) broke the wire cage (it was close to the ground so the kids could play with them) and killed one of the rabbits. We live in a housing development and not a rural area where you might expect something like that to happen.

Best wishes to all and will keep you in my prayers.

nursey420's picture
nursey420
Posts: 53
Joined: Mar 2009

Hello All
As of thursday 4/9 I will be half way thru external pelvic radiation. So far no skin problems but my bladder really doesn't like it. I need to have a full bladder for the treatment. 4 session in I started to have bladder spasms I can contol this with monitoring how full or empty my bladder gets. To full or to empty increases the problem. Yeasterday I had increased pain with urination the doctor suggested increasing my cranberry juice intake and gave me a med call phenazopyrid it has turned my urine to a pretty color of orange but has made it much easier to urinate. As for my bowels a few loose stools but have Imodium if it gets bad. Radiation does not hurt but laying on my stomach face down for 7 minutes every day can be hard but some time a few minute nap feels good. Not looking forward to internal as laying on my back with my legs up for 45 minutes does not sound like fun but at least it can be done out patien. I have stage IIb endometrial Cancer with robotic hys on 2/20.

Ro10's picture
Ro10
Posts: 1484
Joined: Jan 2009

I was surprised to hear you are on your stomach for your radiation treatments. I too had a mold made to keep me on my back and my legs in a certain postion. My markings are on each hip and over the pubic bone. The machine rotates to give the radiation to each of these areas. Sorry to hear about your bladder spasms, and your painful urination. Glad you got some medicine for the burning. I have only had a few urinary tract infections and it does hurt to urinate. I guess I will add cranberry juice as my juice in the morning. I am hoping that when I have my internal radiation (that I have as an in-patient) that I don't have to lay on my back all the time. I am not very good at that. I sleep on my side, or stomach (which I know I shouldn't), but I wake up on my stomach all the time. Take care of yourself. HUGS to you

kellyw314
Posts: 51
Joined: Jan 2007

Hello,

glad you are half-way thru your treatment - surprised that you are laying on your stomach, as for all of my external treatments, I was on my back and "machine" scanned me with technologists behind in a glass enclosure where they monitored me and the "machine" - prior to the start of treatments, I spend several hours being "marked" for the treatments and the creation of a mold which my legs were placed in each day to ensure proper positioning kellyw

Evelyn G
Posts: 21
Joined: Apr 2009

Ro10, you asked about hair loss.

I had three rounds (out of the recommended six) of chemo before I became so toxic I had to stop treatment. I started losing my hair after the second round. My last chemo was Feb. 9 and my eyebrows started falling out last week. Before that, the only visible hair falling out was on my head. That hair began growing in last weekend. Go figure.

I don't know if this answers your question, but it may help you gauge your hair loss.

Wishing a happy, healthy, and blessed Easter to all who celebrate it. Evelyn

Evelyn G
Posts: 21
Joined: Apr 2009

Hi All,

Looks like at least three of us underwent radiation this week. I hope the therapy went well for all.

Bracytherapy wasn't as bad as I thought it would. Lasted 35 minutes total (six minutes for actual radiation) and wasn't all that uncomfortable. When it was finished, the nurse came in with a geiger counter and ran it by my bottom. Is that disconcerting or what?! I had a burning sensation below my naval for some hours afterward. Next treatment is in two weeks.

Praying that all is well with you.

Happy Easter!

jankenb's picture
jankenb
Posts: 28
Joined: Apr 2009

I feel like I am just a bit behind everyone here.
I guess I am anxious to get started with internal radiation..just the feeling I am doing SOMETHING.
They have told me to take ativan and two vicoden before my first brachy....
is this necessary?
Did anyone else do this?
janet

shortmarge
Posts: 296
Joined: Nov 2008

No, I did not take anything during my treatments. It doesn't hurt it's just a bit humilating.

MIND, BODY AND SOUL!

Hugs.

cookie1948
Posts: 79
Joined: Feb 2009

Could someone explain if brachy is the internal radiation? I have noticed that many have said it's humiliating. It's got to be if i can picture it. Are u in an awkward postion and i am not familiar with radiation but do they put something up inside you and what the heck postion do u have to be in. It sounds very uncomfortable in many ways. I admire all of you that have gone and are undergoing any of these type of treatments. I do know you do "what ya gotta do" to be NED. :)
My best to all of you. I don't think i would ever stop reading your amazing journeys and what brave women you are.
God Bless,
Cookie :)

deanna14
Posts: 738
Joined: Oct 2008

Linda, brachy is the internal radiation. I had to undress from the waist down, laying on my back in a "frog leg" position. And yes... we do what we gotta do!

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