cisplatin and radiation

Donna Faye said:

No problem

When I had a recurrence, I had to have the pelvic rads and more brachy. I trusted my rad doc and he assured me the cisplatin worked to enhance the radiation. I had absolutely no problem with the cisplatin, just the normal problems that go with pelvic rads. Now 18 mos. out and doing well. Don't fear the cisplatin.

Donna Faye, thanks for your

Donna Faye, thanks for your response! Im so gald that 18 months out your doing well!!!!

My rad doc and oncologist did say too that the radiation and cisplatin worked together . I have heard that cisplatin can make you very nausious so Im getting nervous about treatment next week. They reassured me I would get antinausea premed before the cisplatin and that I would have to take antinausea round the clock . and that on day 3 i might start feeling sick ....though reminding me that everyones body tolerates treatments different. I didnt get sick with the carbo/taxol so I was hoping for the same but getting nervous. So Im so relieved that you said you didnt have any problems with the cisplatin!!!! I will hope for the same.

How many times did you get the cisplatin during radiation. They changed mine from 5 times to 2 (given on week 1 and week 4) based on a study. My gyno oncologist suggested every week originally but he said was fine with what  the oncologist Im  seeing closer to me is suggesting.

I'm hoping I dont make a mistake only getting it 2x's

Keep feeling well Donna Faye!!!! :-)

zsazsa1 said:

I  completed 5 weeks of whole

I  completed 5 weeks of whole pelvic IMRT this past May.  I didn't take a probiotic because no one told me about it.  Two weeks into the radiation, I first developed mucusy stools (that was the breakdown of the mucus lining of the colon and intestines), and then diarrhea every five minutes.  Rad Onc asked me how many times a day I was having diarrhea - the answer was too numerous to count.  I almost quit the radiation.  But then someone on this website told me to add a probiotic.  It helped within HOURS.  I went from every 5 minutes all day and night, to several bouts of emptying out after having eaten, but it was possible to continue the radiation.  I took Culturelle on someone's recommendation.  I could never have finished radiation without it.

Studies on mice showed that if the probiotic was begun about a week BEFORE the radiation, and continued throughout the radiation, the mice had less bowel mucosa damage.  There aren't any human studies that I know of, but if I were you, I'd start the Culturelle immediately.  Someone else on this forum was advised to start the probiotic before radiation, and swears she had NO diarrhea!

As for the brachytherapy, I was told over and over by the rad onc that he could do the vagina with external beam.  I still think I should have had brachy, too, but he preferred not to.

I don't know what to tell you about the cisplatin.  I pushed for the most aggressive treatment I could get, because I have a very aggressive tumor (UPSC/clear cell) that had gotten out of the uterus, as isolated tumor cells seen in a sentinel node.  If I had a recurrence, I wanted to be able to feel that I had done everything possible to stay here for my family.  But I had only carbo/taxol - and that was bad enough.  I can say that ondansetron was a miracle drug for me.

I know how you feel about the delay in diagnosis.  A lot of us here have similar stories.  I was told my symptoms were nothing, didn't warrant the transvaginal ultrasound I already had scheduled for that day, and diagnosis was delayed for a year.  And it was an experienced MD who told me that!

However you decide, I wish you an easy course with it.

zsazsa1 Thanks for your

zsazsa1 Thanks for your response and sharingyou story. Im so sorry that you went through all of that with the radiation! I cant imagine how that must have been for  you.I will get some Culturelle asap. I asked the radioligist if I should take one and he said it wasnt neccessary. Why they dont listen to patients whom have side effects and what helped them is beyond me. SO glad I have all you ladies for advice!

Im so undecided about the brachy that my radioligist is pushing for. My gyno oncolgist said it wasnt neccasary because based on mypathology report the top of my cervix and uterus werent involved so he deems brachy not needed. Radiolgist says standard to do extrenal pelivc radiation and brachy? WHo to believe....Id say gyno oncoligist he saw it all 1st hand but I dont want tomake a wong decisioin. 

I just dont want to have regrets but feel the my gyno oncologist wouldnt tell me to skip it if he felt deemed necessary.

The delayed diagnosis sure sucks! i wish i knew now what I know now. I had a normal papsmear 1 month before adnormal spottingn between periods. Trusted my midwife of over 15-20 years and never gvae a thought I shoud be tested for something. She didnt recommend further testing I took her word that I was just going to be the unforutante one to get my period more during premenapause. A test in the 1st month of that might have saved me for the BIG C progressing. UGH!!!!!

I just want the same as you ....the best care choice an good health so I can continue to be here for my family!

Thank you for wishing me an easy course ! I wish you good health!!!

MAbound said:

My Space

I can't remember your pathology results and your "My Space" is blank. (Hint, hint) My radiation oncologist and gyn oncologist didn't agree with each other, either. My 69 year old gyn oncologist absolutely did not want me to have brachy during frontline. He only wanted me to have 5 weeks of pelvic radiation. I ended up having the pelvic radiation plus what was called a vaginal boost which is basically brachy delivered externally without using the radioactive tampon.

I really felt caught in the middle between them and didn't appreciate it because it took a lot of help and information from this group to get myself to agree to even have the pelvic radiation. Doctors are just all over the place in philosophies and practices and it just sucks that they look at us to make these life and death decisions.

Here's what you really need to understand and consider when you make your decision:

• Your pathology (hence why I went looking for yours). My cancer originated near the neck of the uterus (the thinnest part) and grew both up into the fundus and down towards the cervix. It penetrated the myometrium 70%. I had lymphovascular invasion with a positive pelvic lymph node on each side. Those particulars put me at having a good chance for recurrence around the vaginal cuff which is where this cancer tends to recur first. (Lungs are second and that's why para-aortic lymph nodes usually get tested, too.) Radiation, particularly brachy or a vaginal boost has been shown in studies to up your odds of remaining NED when you have that kind of pathology vs. not having that as additional treatment. 
• In my circumstances, it also helped to know what kind of equipment was going to be used to deliver the radiation. There are some really sophisticated options out there that can do a lot to avoid surrounding organs such as the bladder, bowel, and hips to minimize adverse side effects. I had mine delivered using 3D-CRT and haven't suffered from some of the ill effects that others have had with internal radiation (brachy). 
• Your gyn oncologist is not necessarily wrong in advising against the brachy. Brachy is a local treatment (effective against only what it's aimed at) and can only be used once to an area. He's not the only Dr. out there who prefers to reserve radiation for if and when it might be needed. Go ahead and give weight to his recommendation, but do it in light of what your pathology particulars are.

I get what you mean about the trust issue. My cancer got to the stage and grade it did due to my doctor being let's-wait-and-see about my late menopause (I was 59 at diagnosis). It is a thing, so I went along with it, but that was a missed opportunity for the possibility of the C word being considered. My periods were regular and my pap smears were negative, so I didn't have it on my radar to question about it. I didn't know about any of the risk factors for this cancer because the focus seems to always be on breast or cervical cancer. It turns out that I had a number of the risk factors and it really angered me that my doctor didn't know better than me to add that all up and consider sending me a specialist sooner. It's all coulda, woulda, shoulda now, but it still upsets me that my cancer wasn't caught earlier and that this similarly happens to others. It's probably going to take the availability of a screening test to change that. Until then, it just seems like there isn't the interest in educating anyone to have it on their radar to try to catch it quick or even do what's possible to prevent it. I could just rant about this forever!

MAbound, it certainly is

MAbound, it certainly is difficult when those on health care team aren't in agreeance! 

And yes ive been saying forever that i need to fill out my space page...hint taken :-)

In short, my gyno oncoligist says that brachy therapy isnt necesscary because he thinks im getting coverage of the vaginal cuff with exteranl radiation. he says its usually recommended if the cervix or top of the uterus was involved and mine was not.  

my diagnosis is at age 44 Endometrial Cancer Stage lll FIGO Grade 2 ( went from stage ll to stage lll because it had spread to my ovaries).  I had a full robotic hysterectomy...went well without any complications,thankfully)! then Cat Scan of pelvic and abdomen...came back negative, negative testing for lynch syndrome. they couldnt understand why someone as young as me with slimmer body type and not have been through menopause and because of that said I didnt fit the bill for endometrial cancer. it was concluded that I had the genetics for endometrial cancer. All of this was so scary and shocking to me because just before the spotting bleeding between periods i had just gone a few weeks prior came back normal and when i called about spottingbleeding she said I was most likely premenopausal and that some get their periods less some get it more and unfortunately I was going to be the one who gets it more. I saw her for so long that who was I not to trust what she said. hindsight now should have asked to be referred to a gynocoligist as she is a midwife. not knowing the medical field and seeing her for so long i trusted she knew what she was talking about. ugh....so mad at myslef for not questioning her!

So after the pelvic abdomen cat scan came back negative I was hopeful that i wouldnt need treatment. the explained id something was smaller than the the vegetable pee that the cat scan wouldnt see it an told me i would need to have preventative treatment. i was schocked that preventative treatment was the full blown cancer treatment. it gives me hope that they say preventative treatment and that I HAD cancer and as far as they know its all been surgically removed. My CA 125 went from in July 104 to post 2 chemo treatments to 7. that gives me reassurance because they said that means my body is responding to treatment. my gyno oncolgist however doesnt take stock in it and says he doesnt do one to after final treatment....way to burst my happy bubble!

next week i begin radiation. still conflicted of what is right about the cisplatin. gyno oncolgist whose older and says that has always been his standard treatment or younger oncologist who states clincal trial shoes know difference in getting it weeks 1 and 4 of radiation vs. once a week. Radioligist whomis youngersays he sides with oncologist . they are in the same Cancer Center.

I cant make that choice as a patient. their suppose to be the experts! UGH!

I hoping that you are well MAbound ! Thank you for listening and advicing as well as encouraging!

I so apppreciate you ladies!

MAbound said:

Iron?

Why are you taking an iron tab? How long have you been taking it? I ask because with going into surgical menopause, if you were anemic due to your periods, that should no longer be a concern for you and you really shouldn't take an iron supplement unless there is a really good reason and you are advised to take it by your doctor.

The best way our bodies get rid of excess iron is through blood loss. After menopause you are more susceptible to iron toxicity if you take an iron supplement. Iron toxicity can actually cause cancer, particularly colon cancer, so it is much safer to get what you need from food. A doctor might prescribe it for a set period of time if your levels test low, but this is a supplement you don't want to keep taking indefinitely without getting your levels checked regularly.

Oh MAbound you are so

Oh MAbound you are so knowledgeable. I was told to take it when I was bleeding prior to the hysterectomy. I asked them to check my iron level  a few weeks ago when they were doing routine blood work. She told me the level was good and that I wasnt at the risk of anemia. She beversiad to stop taking it so I assumed I should continue as I was concerned about not getting enough Iron through food.

Jeez, I have learned way  more on here than any doc off. I have an appt tomorrow that Im hoping to not to have to cancel , and I will ask then and tell them my concern.

MAbound said:

Self-preservation

It's important and vital to one's own self-preservation to never be a passive patient. There is no such thing as a doctor who knows everything about everything and has the time to educate us about it all, so the onus is on us to fill in the gaps for what pertains to us. It seems like the more you learn, the more there is to learn. It never stops, but it's worth the time and effort you put into it. 

I just can't understand ingesting anything without thoroughly understanding the pros and cons of doing so, so discussions about supplements tend to get me up on my soap box. So often the benefits get tauted without discussion about the potential negatives and times when they would be contra-indicated. I know I can be irritating when I go "but....", but .....

 

MAbound , I always appreciate

MAbound , I always appreciate your knowledge and your input! I hve learned so much from you ladies 1st hand experience and its helping me get through this journey tremendously!

I am learning that they cant or dont have the time to answer all my questions so coming to this board is so helpful to me. 

Learning I need to be my own advocate and I know its my right to question anything Im not comfortable with in regards to decisions my helath team are making in regards to my treatment. Often I know they get annoyed with all my questions but I also know if I dont ask and question how will I know .