Post chemo recovery

bluehyacinth

Gardena said:

Bluehyacinth

Do you mind me asking what dose of cisplatin you were given?  I was told I would be given low dose, which normally is 40mg, but because my post chemo scan showed NED the dose I'm getting is 25mg. Apparently low doses of cisplatin boost healthy cells and makes cancer cells (in my case, microscopic if at all present) more susceptible to the radiation. When I spoke to my onco nurse she thought I would not have a reaction to the cisplatin since I made it thru the carbo/taxol wo nausea (altho post chemo treatment I am experiencing slight nausea and indigestion). She said I would more than likely have more stomach /bowel issues from the radiation - and that the radiation team and the chemo team end up pointing fingers at the other as to who is to blame

One last note, I too have adominal pains -- some are consistent and others fleeting. Scares me it's cancer brewing but I don't want to live in fear. I will mention to my Dr,  but w a clear scan, what is there to do? 

I think this forum is so awesome and I appreciate everyone who posts and shares.  I don't really talk about my dx w irl friends, so it's wonderful to have you all. Thanks for being here!

Hi Gardena, I don't remember

Hi Gardena, I don't remember my Cisplatin dose, but it is based on our weight. My dose was not lowered I am sure. I will try and remember to have someone look it up tomorrow when I am having my last chemo, I hope, my platelets were too low a week ago. Hopefully they went up this week.

 

I never lost my hair, perhaps because I was on liposomal doxirubicin rather than taxol. I guess I can still lose it if I get the last chemo. I am so tired of this cancer life, I am developing an allergy to medical personel.

ConnieSW

bluehyacinth said:

Hi Gardena, I don't remember

Hi Gardena, I don't remember my Cisplatin dose, but it is based on our weight. My dose was not lowered I am sure. I will try and remember to have someone look it up tomorrow when I am having my last chemo, I hope, my platelets were too low a week ago. Hopefully they went up this week.

 

I never lost my hair, perhaps because I was on liposomal doxirubicin rather than taxol. I guess I can still lose it if I get the last chemo. I am so tired of this cancer life, I am developing an allergy to medical personel.

Fingers crossed, Blue

that you succeed in getting that last chemo today.

christine8822

Genetic testing, Neuropathy

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

CheeseQueen57

christine8822 said:

Genetic testing, Neuropathy

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

Lynch Syndrome

I know my doctor did mention that they will test my tumor for Lynch syndrome.  I had wanted it tested more extensively also but at the very least, they do test for Lynch. 

Editgrl

christine8822 said:

Genetic testing, Neuropathy

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

Being tested

I am being tested for Lynch Syndrome, and depending on the results,  possibly more extensive testing. 

TeddyandBears_Mom

Editgrl said:

Being tested

I am being tested for Lynch Syndrome, and depending on the results,  possibly more extensive testing. 

I was tested for Lynch prior

I was tested for Lynch prior to knowing I had cancer. My sister has Lynch so there was a 50/50 chance I would too. And I have it too, darn it!

No one has suggested that I have any additional genetic testing.  However, I do have to have more screening than "normal" people. Like colonoscopies every 2-3 years and annual skin reviews. We go into a higher bracket of multiple cancer types with Lynch. Uterine, Ovarian, Thyroid, Pancreatic and Colon. I may have missed a few. Doesn't mean we will get them. However, my sister has had Thyroid, Uterine an Pancreatic cancer. All caught early and she has not had to do chemo. She is on 3 month scans - they are doing MRIs now to limit her radiation exposure.  She had her thyroid and half her pancreas removed along with a radical hysterectomy.  So far, she is doing well.

I hope they find a cure for all of us using our genetic make up sooner than later!

Christine - the neuropothy in my feet is still really bad. I'm 13 weeks out. I see my surgeon on April 1st and plan to ask him about that. My legs still hurt too, but my feet are way worse....

Love and Hugs,

Cindi

Unknown

christine8822 said:

Genetic testing, Neuropathy

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

No, but path did look into Lynch Syndrome for me

They ran additional analysis on the tumor and it didn't show any mismatch repair issues so they ruled out Lynch Syndrome.  I will have my last chemo next week, but #5 they skipped the taxol because the doctor thought my feet were too bad.  They have improved slightly since 3 weeks ago, but the fingertips still are pretty prickly.  Hugs Nancy

EZLiving66

christine8822 said:

Genetic testing, Neuropathy

Wonder if anyone had genetic testing for Lynch Syndrome. Doc wants me to have. It seems genetic testing is the new thing with endometrial cancer diagnosis, espeically if tumor analysis shows any kind of "mismatch repair" issue.

Also, 12 weeks out I still have neuropathy in feet and ankles, not hands, wondering if it fades with time.

 

Since there was very little

Since there was very little cancer in my family, my doctor said I did not meet the criteria to be tested.  

I'm 3 1/2 months past chemo and I think the neuropathy is getting WORSE.  For the first time in weeks, I had to take Peroset during the night.  It felt like somebody was sticking dull needles into my legs and my feet were on fire.  My toes and most of my fingers are still pretty numb and my balance is still off.  I start physical therapy on Tuesday and I am hoping it helps - I call myself a chemo cripple.

Love,

Eldri

Soup52

Gardena said:

Welcome Christine8822

I'm glad you found this forum, such great people here. I too was diagnosed w 111C endometrial, but unlike you, I'm still in treatment -- I have completed 6 rounds of carbo/taxol and this week I start external beam radiation coupled w low dose cisplatin. And tho I don't have any diet suggestions I want to thank you for giving a time line on your hair returning. I'm four weeks out from my last carbo/taxol infusion and the hairs on my head that remained thru treatment have gotten longer but nothing else has come in. I'm missing sections of each eyebrow and my lashes are sparse... just when I'm feeling stronger than I have since I started this journey I look the most ill!

I find out today if my cisplatin/radiation starts tomorrow or next week - either way, I'm nervous about this phase of treatment. My onco team wanted me to start this protocol 2 weeks after frontline chemo but agreed to give me more time to get my strength back - I felt like I was on a conveyor belt of treatment getting my butt kicked at every corner.  For me, chemo was painful,  but it worked (at least so far!) Any guidance, recommendations,  suggestions on the radiation process you (or anyone reading this) can give is greatly appreciated. All the best to us all~

I am also 111c. I have just

I am also 111c. I have just completed my 3 chemo, but I had 5 weeks of radiation external and 3 brachytherapy treatments after surgery and before chemo. In a way I think I had more problems with radiation digestive wise. I believe I altered my diet too much when I did it. I was so afraid to have fiber that I was getting hardly any. I suffered from constipation rather than diarea. Finally after getting on this board I found many people took probiotics and once I did that I found some relief along with taking stool softeners. Brachytherapy was the therapy I disliked the most and probably because my radiation oncologist lacked bedside manner in a big way, so hopefully yours will be good. Also he did not prescribe lidocaine to use before and many people had good results using it. I'm hoping yours all goes well

christine8822

Lynch Syndrome

Update: The genetics doctor wants me to be tested for Lynch Syndrome since my the tumor had mismatch repair issues. She ran all my data and family history through an algorithm and said there's a 93% chance I do not have it, but since one grandmother had Ovarian cancer, that automatically qualifies me for the test, and hopefully my insurance will pay. I have decided to go ahead.

I have had mixed feelings about this. if positive I would hate to burden my daughters and sisters with such knowledge, and once the cat is out of the bag, there is no way to put it bak in or pretend it's not there. It would mean years of intrusive tests etc starting at a young age. On the  other hand, if I find out I don't have the syndrome, i can let them know and they won't worry about it.

I guess nobody else objects to genetic testing, but I also am concerned about privacy issues and discrimination issues. I brought it up with my doctor and she said those are in fact real issues. Genetic testing, widespread, is so new that nobody knows what it all will mean for society.

At any rate, I will have the test.

TeddyandBears_Mom

christine8822 said:

Lynch Syndrome

Update: The genetics doctor wants me to be tested for Lynch Syndrome since my the tumor had mismatch repair issues. She ran all my data and family history through an algorithm and said there's a 93% chance I do not have it, but since one grandmother had Ovarian cancer, that automatically qualifies me for the test, and hopefully my insurance will pay. I have decided to go ahead.

I have had mixed feelings about this. if positive I would hate to burden my daughters and sisters with such knowledge, and once the cat is out of the bag, there is no way to put it bak in or pretend it's not there. It would mean years of intrusive tests etc starting at a young age. On the  other hand, if I find out I don't have the syndrome, i can let them know and they won't worry about it.

I guess nobody else objects to genetic testing, but I also am concerned about privacy issues and discrimination issues. I brought it up with my doctor and she said those are in fact real issues. Genetic testing, widespread, is so new that nobody knows what it all will mean for society.

At any rate, I will have the test.

Christine, if you find out

Christine, if you find out you have Lynch, your sisters and daughters have a 50% chance of having it as well. While I get the not wanting to know, it really is a gift to your family. If I had listened to my sister and had been tested for it a few years ago, I could have avoided this cancer. But, I was afraid to do it. I found out I had lynch the same day I found out I have cancer. Bummer.... anyways, water under the bridge for me and I can't change it. But, I wanted to share this with you so that you had input from someone that truly understands.

That being said, the screenings are things that everyone gets. We just have to get them more frequently.

I hope this helps.

Love and Hugs,

Cindi

Gardena

christine8822 said:

Lynch Syndrome

Update: The genetics doctor wants me to be tested for Lynch Syndrome since my the tumor had mismatch repair issues. She ran all my data and family history through an algorithm and said there's a 93% chance I do not have it, but since one grandmother had Ovarian cancer, that automatically qualifies me for the test, and hopefully my insurance will pay. I have decided to go ahead.

I have had mixed feelings about this. if positive I would hate to burden my daughters and sisters with such knowledge, and once the cat is out of the bag, there is no way to put it bak in or pretend it's not there. It would mean years of intrusive tests etc starting at a young age. On the  other hand, if I find out I don't have the syndrome, i can let them know and they won't worry about it.

I guess nobody else objects to genetic testing, but I also am concerned about privacy issues and discrimination issues. I brought it up with my doctor and she said those are in fact real issues. Genetic testing, widespread, is so new that nobody knows what it all will mean for society.

At any rate, I will have the test.

Christine8822

I too was screened for Lynch. My reason to go forward w the testing was I no longer wanted to live in fear. Fear of 'what if'. Before my endometrial cancer dx I was fearful my symptoms were cancer and not menopause as I first suspected. Fear caused me to drag my feet a bit in getting checked out. No more. I'm kicking butt and taking names, knowledge is power, and I plan to be the strongest version of myself possible when I'm done w treatment. 

Turns out, I don't have Lynch syndrome. I also dont have fear of not knowing whether I have it or not. One of my favorite sayings is, 'It all starts in your mind. What you give power to has power over you.'

 

 

Soup52

Gardena said:

Christine8822

I too was screened for Lynch. My reason to go forward w the testing was I no longer wanted to live in fear. Fear of 'what if'. Before my endometrial cancer dx I was fearful my symptoms were cancer and not menopause as I first suspected. Fear caused me to drag my feet a bit in getting checked out. No more. I'm kicking butt and taking names, knowledge is power, and I plan to be the strongest version of myself possible when I'm done w treatment. 

Turns out, I don't have Lynch syndrome. I also dont have fear of not knowing whether I have it or not. One of my favorite sayings is, 'It all starts in your mind. What you give power to has power over you.'

 

 

I have an appointment with

I have an appointment with genetics next month. There has been no cancer in my family, but I am concerned for both my daughters future,especially my older daughter who received a kidney from me 8 1/2 years ago. Of course they did extensive testing on me at that time, but I still wonder if it was already lurking in me.

bluehyacinth

Gardena said:

Bluehyacinth

Do you mind me asking what dose of cisplatin you were given?  I was told I would be given low dose, which normally is 40mg, but because my post chemo scan showed NED the dose I'm getting is 25mg. Apparently low doses of cisplatin boost healthy cells and makes cancer cells (in my case, microscopic if at all present) more susceptible to the radiation. When I spoke to my onco nurse she thought I would not have a reaction to the cisplatin since I made it thru the carbo/taxol wo nausea (altho post chemo treatment I am experiencing slight nausea and indigestion). She said I would more than likely have more stomach /bowel issues from the radiation - and that the radiation team and the chemo team end up pointing fingers at the other as to who is to blame

One last note, I too have adominal pains -- some are consistent and others fleeting. Scares me it's cancer brewing but I don't want to live in fear. I will mention to my Dr,  but w a clear scan, what is there to do? 

I think this forum is so awesome and I appreciate everyone who posts and shares.  I don't really talk about my dx w irl friends, so it's wonderful to have you all. Thanks for being here!

Gardena my Cisplatin dose was

Gardena my Cisplatin dose was 56 mg and it was based on your weight and hight (surface area).

 

Thanks Connie yes I did get my last chemo, the platelets jumped 100% in one week without doing anything but wait a week.