how soon after surgery did you start the chemotherapy?

SF73 said:

ugh. such a depressing study

https://link.springer.com/article/10.1245/s10434-015-4443-1 I should stop googling. 

Do you guys know any cancer survivors who had Microscopic Omental Metastasis of Endometrial Cancer (endometriod type) who responded well to chemotherapy?

Remember that you are an individual....a statistic of one as we like to say. You are just scaring yourself needlessly with looking at studies that give statistics to try an figure out what your odds are. They really are the most useless of studies, because most of them are too small to really have much meaning that holds water. Junk science in my opinion. You've had debulking surgery that removed the visible cancer and are about to undergo chemo next which treats systemically to get those microscopic cells. It's potent medicine. There's still a good chance that it will be very effective for you and if not, you may have to keep at it after frontline treatment like a diabetic has to keep at controlling their blood sugar. What you are dealing with may be a difficult situation, but it is by no means hopeless and scaring yourself like this does not put you in a good place for what you have in front of you to do. So quit googling statistics, they are worthless; instead spend your time reading here and taking notes....it's a lot to slog through and not very organized, but there is a lot of helpful information here.

NoTimeForCancer said:

EPH, steroids is typical for

EPH, steroids is typical for chemo as well.  You have not been given any?  

They may give them to her during her chemo visit. I was never given anything prior to chemo. I had all pre-meds in the IV. And, I can tell you the Benedryl made me very sleepy. It made the day go by a lot faster. I slept a lot, woke up, ate and went back to sleep. :-)

SF73 said:

what now?

Pathology report is back. I didn't get a chance to review with my oncologist who is out of town but from what I can see, left ovary was fine, appendix was fine. Right ovary was completely consumed by this 7 cm mass, a moderately differentiated endometrioid endometrial adenocarcinoma (so not a new ovarian cancer, this is a recurrence) and worse of it all, the omentum has metastasis at the microscopic level. One good piece of news is I don't seem to have microsatellite instability issue that derMaus was mentioning. 

I believe the presence of cancer - even microscopic- in omentum puts me in Stage IVb. My whole journey started in early June with some complex atypical hyperplasia with foci highly suspicious for endometrial adenocarcinoma. Initial guess was it would be stage 1, grade 1. 5 months later, I am in stage 4b at the age 44 with a kid whose only 11. Every article I read so far suggests poor prognosis for omental metastasis. I try to stay positive but it is hard. My husband and I discussed my diagnosis with our daughter but I still have not told my parents who live overseas. They know about the hysterectomy in June and immediately came to visit us. But they thought that the surgery was for the fibroids and to prevent future chances of developing cancer. 

I am trying to get complete genomic profiling of my tumor. It has been so challenging. Since my oncologist is out of town, his team made an appointment for me in genetic counseling which is not what I am interested in. I am more interested in the acquired alterations (genomic alterations) which are responsible foor the majority of cancer, as opposed too hereditary changes (genetic alterations) which are responsible for about 5-10 percent of cancers. It is very disappointing that my oncologist's team does not know the difference. I will see him on Monday and hopefully get him to order Foundation One. At the end of the month I will get a second opinion from Stanford. I called to see if they can authorize the ordering but they said the oncologist needs to see me first and the person who performed the surgery should be requesting this. 

In the meanwhile, I started taking Megestrol (my regular gynecologist who mistook my initial recurrence symptoms in early September as food poisioning prescribed them to me) Put myself on a quasi-keto diet. (I am a pescetarian, I eat fish but no other meat) I was not too heavy to begin with. I am five foot one, used to weigh 140 pounds (back in June). Now I am 126.6 (last 5 pounds lost in the last month) I still have my appetite but I am so afraid of feeding the cancer. I read a few tiny studies that mention the benefits of ketogenic diet in conjuction with chemo. This is something I can do without having to fight with bureucracy. I don't think I have insulin resistance. Few times it was measured, my blood sugar was low.  I have to convince someone to give me the IGF-1(insulin growth factor) test I guess. Do you think Metformin during chemo can help me as it helped others on this forum? I want to make sure I am doing everything I can. What else can I do?

I've had both genetic and geonomic testing done. The former is really only a measure of your potential for future cancer and, for me, that boat has sailed. My original surgical path report included some geonomic testing (P53, PMS2/microsatellite instability, estrogen sensitivity) and the F1 report rounded out the picture. My genetic counseling confirmed the PMS2 and that I don't have Lynch. Had my original oncologist cared to do the research, she might have noted the PMS2/platin connection, but she didn't. Disappointment with our oncology teams seems to be a sentiment we share. I assume the Megestrol been vetted for it's impact on your type of cancer; I asked for Metformin because of it's potential impact on uterine cancer in general, and my PIK mutations in particular. I'll be very curious as to what Stanford says. I live in So Cal and have considered going there myself. 

NoTimeForCancer said:

EPH, steroids is typical for

EPH, steroids is typical for chemo as well.  You have not been given any?  

HI, yes I was given Decadron (5 tablets/20 MG) the night before chemo, then (2 tablets/8 MG) 2x a day for 3 days following. I think I just referred to that in my other post as anti-nausea meds; but it was dexamethasone (Decadron)

Chemo affects really differ between people, and your team will be adjusting the dosages as you go along so it hard to say what to expect.  Usually the steroids and benadryl given with the chemo make you comfortable on Day 1. By Day 3, I was very tired (not nauseaus) and really needed encouragement to get up, drink and eat.  Drinking a LOT is really important, even if you do not feel thirsty. All of us should drink 8 large (8 oz) glasses a day, and increase that for chemo. Water helps with the roller coaster of constipation and diarrhea too (that was a big problem for me).  It took me about a week to get some energy back, get up and around.  So about 10 good days before next chemo can be expected if you are on a 21 day cycle. With each cycle symptoms got worse and it was hard for me to finish 6 cycles. 

My white cells crashed completely first cycle, make sure you get the labs done as ordered to see how low your nadir goes. I required Neulasta and Neupogen (white blood cell colony stimulating factors given by injection) throughout the rest of chemo to avoid the crash, and could not do public spaces, gardening, strangers, or raw unwashed fruit and veggies.  So lots of labs are needed in addition to chemo, which may be another reason to get a port.  They really are handy.

The chemo nurses are wonderful, have lots of suggestions.  Do not be shy about calling your medical team day or night if something is concerning.  Especially ANY fever over 100.

SF73 said:

Finally starting chemo on Halloween!

My oncologist is back from his vacation. He is starting me on Carbo/Taxol/Avastin on October 31st. He also increased the dose of Megestrol (80 mg in the morning and 80 mg in the evening). He recommends Metformin but says he cannot prescribe it himself. I need to convince a PCP to give me some. I don't know how to do that since my BG is already low. Any advice? Initial chemo start date was November 6th but I insisted on getting it sooner. Apparently someone canceled and they were able to make that happen (chemo 21 days after the surgery) The only downside is I will be starting the chemo before the chemo education session. I have been reading this site and a few other sites to see what I should be expecting. On Thursday we got a second opinion from UCSF. Medical oncologist there agreed with the treatment plan. She ordered the genomic testing and hormonal receptor testing (apparently we don't know if my tumor was ER positive. I must have just assumed it was since the grade was 2. She said that grade 1s are usually ER and PR positive but grade 2 can go either way) She suggested that we don't delay anything. Learnings from the genomic profiling can be handy if we need a second line of treatment.  On Monday we will also see the head of the department at Stanford Women's Cancer. I hope he will also agree and I will have a lot more confidence in the choices my doctor made. Despite being on Megace and having a healthy appetite, I am still losing a bit weight. I am now down to 124 lbs. My doctor said it was ok to be on any diet if it makes me feel good (nutrition is not something he studied so his opinion is not expert opinion anyways he said) but he wanted to make sure that I am healthy/strong for the chemo.  

Even though I have really tiny veins that nurses that problems with in the past I decided not to get a port. I didn't want to risk delaying the treatment. Has anyone received chemo via IV? How bad is it? I read about extravasation (when a drug leaks into the surrounding tissue rather going into the vein) It seems like it is riskier if the drug is vesicant. But carbo and taxol do not seem to be vesicant, just irritant. Anything I can do to reduce the risk? Maybe drinking tons of water the day before?

I took the medical leave from my work. My oncologist recommended taking the full 12 weeks my company is offering upfront to first see how I will tolerate the therapy. If I feel well I want to go back to work because I love my job but I want to make sure I am making my health my priority. I know some of you worked while on chemo. Would love to learn from your experiences. Did you guys take the week of infusion off? I work at a technology company. All my coworkers are 20-30 something year olds who are very into wellness and fitness. I think they will freak out to see a bald headed woman working amongst them. 

Now that we have a plan in place I am less nervous. The only unresolved issue is my parents. I still have not told them. They live overseas. My mother is 66 years old and has hypertension. Her mother just had a glaucoma surgery and she is taking care of her. My father is 73. They both are very anxious people and google as much as I do When I had the hysterectomy this summer (they didn't know about the cancer diagnosis, just the risk of developing cancer in the next 10 years if the hyperplasia was not addressed) they immediately came to the states and were worried the whole time. Even though I was taking 4 mile hikes the second week of recovery. But I guess with chemo there is no hiding. It might be better to share before I start losing the hair. Once I handle breaking the news to them in the most gentle way possible I think I will have less stress in my life. 

If there are any threads that are especially useful about what to expect from chemotherapy/ tricks etc please do let me know. Thanks for all the support. It is really wonderful to have people who can relate to what I am going through. 

You can always change your mind and get a port if they have problems with your IV.  You can get it done and have chemo the next day, so it won't hold anything up.  I've always had problems with IV's and I tend to get dehydrated easily which makes the IV more difficult.  I'm so glad I went with the port.  I said 'no' to start with and my son talked me into it.  Chemo is tough, so anything you can do to make it more comfortable is a good thing!!  Hugs.

SF73 said:

Finally starting chemo on Halloween!

My oncologist is back from his vacation. He is starting me on Carbo/Taxol/Avastin on October 31st. He also increased the dose of Megestrol (80 mg in the morning and 80 mg in the evening). He recommends Metformin but says he cannot prescribe it himself. I need to convince a PCP to give me some. I don't know how to do that since my BG is already low. Any advice? Initial chemo start date was November 6th but I insisted on getting it sooner. Apparently someone canceled and they were able to make that happen (chemo 21 days after the surgery) The only downside is I will be starting the chemo before the chemo education session. I have been reading this site and a few other sites to see what I should be expecting. On Thursday we got a second opinion from UCSF. Medical oncologist there agreed with the treatment plan. She ordered the genomic testing and hormonal receptor testing (apparently we don't know if my tumor was ER positive. I must have just assumed it was since the grade was 2. She said that grade 1s are usually ER and PR positive but grade 2 can go either way) She suggested that we don't delay anything. Learnings from the genomic profiling can be handy if we need a second line of treatment.  On Monday we will also see the head of the department at Stanford Women's Cancer. I hope he will also agree and I will have a lot more confidence in the choices my doctor made. Despite being on Megace and having a healthy appetite, I am still losing a bit weight. I am now down to 124 lbs. My doctor said it was ok to be on any diet if it makes me feel good (nutrition is not something he studied so his opinion is not expert opinion anyways he said) but he wanted to make sure that I am healthy/strong for the chemo.  

Even though I have really tiny veins that nurses that problems with in the past I decided not to get a port. I didn't want to risk delaying the treatment. Has anyone received chemo via IV? How bad is it? I read about extravasation (when a drug leaks into the surrounding tissue rather going into the vein) It seems like it is riskier if the drug is vesicant. But carbo and taxol do not seem to be vesicant, just irritant. Anything I can do to reduce the risk? Maybe drinking tons of water the day before?

I took the medical leave from my work. My oncologist recommended taking the full 12 weeks my company is offering upfront to first see how I will tolerate the therapy. If I feel well I want to go back to work because I love my job but I want to make sure I am making my health my priority. I know some of you worked while on chemo. Would love to learn from your experiences. Did you guys take the week of infusion off? I work at a technology company. All my coworkers are 20-30 something year olds who are very into wellness and fitness. I think they will freak out to see a bald headed woman working amongst them. 

Now that we have a plan in place I am less nervous. The only unresolved issue is my parents. I still have not told them. They live overseas. My mother is 66 years old and has hypertension. Her mother just had a glaucoma surgery and she is taking care of her. My father is 73. They both are very anxious people and google as much as I do When I had the hysterectomy this summer (they didn't know about the cancer diagnosis, just the risk of developing cancer in the next 10 years if the hyperplasia was not addressed) they immediately came to the states and were worried the whole time. Even though I was taking 4 mile hikes the second week of recovery. But I guess with chemo there is no hiding. It might be better to share before I start losing the hair. Once I handle breaking the news to them in the most gentle way possible I think I will have less stress in my life. 

If there are any threads that are especially useful about what to expect from chemotherapy/ tricks etc please do let me know. Thanks for all the support. It is really wonderful to have people who can relate to what I am going through. 

I didn’t mention this, but I did have my first chemo without a port so we could get started and then my port was in for all the following chemos. For me it was easier having a port. I was able to use both hands etc. I still have my port in.

I also would recommend getting a port, which at first I was reluctant to do, but am very glad I did. I am a cellist and did not want to risk messing up my hands, which is possible if the solution leaks while being infused. That way you will also have your hands free for the day of chemo and any contrast for future scans can also be delivered more easily. I never had any meds before getting to the hospital the day of chemo, but I was given a numbing medicine to smear on an hour before arriving. In the IV I was given four or five meds before the chemo (carbo/taxol), and I noticed the Benedryl was really weird stuff as it entered. Chemo was not as bad as I anticipated, but I did have three or four days each three week session where I got terrible bone aches. No nausea though. Good luck as you continue this journey! Martha

PS I started chemo about five weeks after surgery due to the intervening Thanksgiving holiday.