Post chemo recovery

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.

that you succeed in getting that last chemo today.

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.

 

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 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 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

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 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

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 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.

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.'

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 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.