Diagnosed with stage IVB Endometrial cancer

LadyMox

I have a question for those

I have a question for those who did chemo. How many rounds of chemo did it take before you were told the chemo was working or not?

LadyMox

pinky104 said:

Another Survivor

I'm one of the survivors you're trying to find. I'm just about 8 years out now.  I was initially diagnosed in the spring of 2010.  I hit the five year mark with no problems, but had a bad recurrence in the spring of last year, had surgey again, and finished chemo last September.  I was also a stage IVB originally and I had UPSC (uterine papillary serous carcinoma) which I understand is just called serous carcinoma now.  Mine was actually adenocarcinoma.  It's a very aggressive cancer and my GYN/onc. seems to think I might get it back in another 5 years or so, but for now I'm with no evidence of disease for the second time.  I'm quite a bit older than you, 69, and will be 70 next month.  It sounds like you're most likely in upstate NY, as am I, but I'm in the eastern part of the state.  UPSC can grow very fast, so if you find out after your surgery that you have this type, be sure to report any symptoms as they occur to your doctor.  I know I had a lot of sugar cravings.  I'd recommend doing hemoccult tests regularly if you can, as my second run-in with this cancer was diagnosed from having a trace of blood in one of three stool specimens on mine.  The cancer had wrapped itself around my ascending colon that time and had even made my right thigh numb from being in the muscle near my pelvic bone.  I had carboplatin and taxol after my surgery in 2010.  The second time around, I had surgery, then carboplatin and gemzar until I developed an allergy to carboplatin in my next to last round and was switched to cisplatin along with the gemzar. Good luck with everything. 

I am assuming they will be

I am assuming they will be able to tell me more about my cancer when they eventually gut me. I am hoping mine is slow growing as I have had indigestion for the past 2 years , but I didn't think much of it getting into my 40's with a large belly. I am praying this means it's a slow grower but of course I have no idea.  I am indeed in upstate, NY and am being treated at Roswell Park which is supposed to be a top-knotch cancer hostipal, so if there is any chance for me they will find it hopefully.

Great to see a long term survivor. I hope you are remission is forever this time!

 

 

MAbound

Chemo working or not

I had blood work twice between each chemo infusion, but that was more to see what my blood levels were like when I hit nadir and just before the next infusion to determine how things were rebounding befor proceeding to the next infusion. After all was done I had a PET scan before radiation to see what there was to see after chemo. 

CheeseQueen57

Chemo

I think they can test your tumor before you get chemo for which kind of chemo would work best for you. Unfortunately they didn’t do that for me. I got the standard carbo/ taxol but only could finish 14/18 because of a stroke. 8 months after finishing radiation I reoccurred so I consider the chemo a failure. Only 50/50 chance of working and I guess I was on the wrong side of 50. Fortunately Megace is working to keep reoccurence in check. But i wish I had had a little more info on the front side on which chemo might have been more effective for me and not just got the standard treatment. 

cmb

Chemo

Like MAbound, I had a CT scan four weeks after I finished chemotherapy. During treatment I only had the weekly bloodwork that she describes. I did not have the tumor testing that CheeseQueen describes. I agree that this would be something to consider, especially for late stage cancer.

However, my medical oncologist recommended two phases of chemotherapy, each with different drugs. So I had four treatments of the typical Paclitaxel/Carboplatin, followed by four treatments of Ifosfamide (with Mensa)/Doxorubicin. I hope that at least one of the four drugs I got was the "right" kind for my cancer.

I was NED after chemotherapy, although I did have external radiation as a preventative measure a couple months after chemo.

pinky104

LadyMox said:

I have a question for those

I have a question for those who did chemo. How many rounds of chemo did it take before you were told the chemo was working or not?

It was a long time ago when I had my first bout of cancer, but I vaguely remember having a CT scan partway through my six rounds of chemo which showed it was working.  I'd say it was after three or four rounds of chemo, but that's just a guess. 

Yes, Roswell Park is pretty well known for being a great place to go.  I remember their having sent me ads about getting a second opinion there.  If I hadn't trusted my GYN/onc. in Albany, I might have taken them up on their offer.

Your indigestion might just be reflux esophagitis. Your excess weight may have given you a hiatal hernia.  If you're not already taking it, ask your GP for 40 mg. of Omeprazole or some Dexilant if your insurance will cover it.  I've tried both, and they've done wonders for me.  I remember having had reflux so bad that I questioned whether or not I was having a heart attack.  I no longer have to worry about it.  I've been on the pills for years.

derMaus

LadyMox said:

I have a question for those

I have a question for those who did chemo. How many rounds of chemo did it take before you were told the chemo was working or not?

There's no standard answer to

There's no standard answer to your question but, for the majority of women, treatment is completed then they scan for efficacy before moving onto radiation (if that's in the plan). I have some experience with this, as I completed six rounds of carbo/taxol and, afterwards, found I'd grown mets while on chemo. That was how they discovered it wasn't working - duh - and I found out my cancer was 'platinum resistant'. If I had it to do over, I would demand a scan halfway through the chemo to ensure it was actually doing what it was supposed to do. 

LadyMox

These past few days I can't

These past few days I can't stop crying, I feel like I am already dead and it's a matter of time. I'm only 42 and I just can't stop thinking about all the years I will lose with my loving husband because of this cancer.  I'm trying to hope somehow they will get me NED  for now and maybe one of those hormone inhibitors might be able to buy me a good long time before it comes back, but it's been so hard to keep hope for a future. I don't mean to be a downer but I'm just so overwhelmed.

Armywife

LadyMox said:

These past few days I can't

These past few days I can't stop crying, I feel like I am already dead and it's a matter of time. I'm only 42 and I just can't stop thinking about all the years I will lose with my loving husband because of this cancer.  I'm trying to hope somehow they will get me NED  for now and maybe one of those hormone inhibitors might be able to buy me a good long time before it comes back, but it's been so hard to keep hope for a future. I don't mean to be a downer but I'm just so overwhelmed.

We've all been there

It's a sucker punch for sure, and we have all been through the phases of hopelessness, fear, grief, anger, and wanting to run away and wake up from that bad dream.  Please know that this will ebb and flow - some days will seem possible, and some days will send you back under the covers.  Embrace them both; live them both.  They're your ilfe.  Don't waste a day of it.  You'll get through this!

cmb

Emotional Whirlwind

I think it's safe to say that anyone who receives a cancer diagnosis goes through a myriad of feelings. I know that I did when I got the news that I had cancer, especially an aggressive kind. But the intensity of my emotions did lessen over time as I continued treatment, although I still have my ups and downs.

Armywife had some excellent advice. I'd also like to suggest that you investigate what support resources your cancer center may have as well. While I didn't take advantage of the wig fitting service (as I already wore wigs before cancer) and the cancer support groups or counseling, I did participate in many of the exercise classes that were specifically geared for cancer patients and survivors.

Now I am by no means an exercise fanatic – that's why I've always found it easier to join a class rather than rely on my own initiative to walk or exercise at home. The cancer survivorship center allowed me to sign up for one or more classes a week – depending upon how I felt. And if I wasn't sure that I'd feel okay enough to go, I could wait until the day before to actually register for the next day's class. I stopped going to the classes when I was in the second phase of chemo, which was a lot tougher than the first phase. But I started up again after I finished radiation.

So there may be some activity or support service that your own cancer center offers that would help you during this period. All these services at my cancer center are free.

LadyMox

Likley a good indicator on my

Likley a good indicator on my second chemo day. My CA-125 dropped from 120.9 to 36 between the first and second chemo. Will probably get a CAT scan to see if/how the tumor is shrinking after 1 or 2 more chemo of Taxol/Carbo.

MAbound

Suggested Reading

I don't know how much reading of past threads you've had the time or emotional stamina to read since you've joined, but you may want to read posts written by an amazing lady on this board by the name of Takingcontrol58. She's been on this forum since about 2016, I think, so you wouldn't need to go back further than that, but you can also get to some of her posts by typing her name into the keyword box of the the search engine above.

There are a lot of us who have employed complementary medicine into our treatment with the support of our gyn-oncologists and she is a font of knowledge, first-hand experience, and expertise for metastatic endometrial adenocarcinoma strategies using complementary medicine. Her past posts can give you hope when you feel low about what you are dealing with and give you a means to keep helping yourself after you are done with the treatment plan you are on now.

The one caveat I have regarding complemetary medicine is to not do this on your own. You'd need to get the expertise of a naturopath who specializes in oncology along with the ok of your gyn-oncologist or the team treating you at Rosewell. Somewhere I have the URL for a website that helps you find a NP oncologist that our dearest Editgirl pointed me to. I'll post it if I can find it. Otherwise, maybe Rosewell has such a person available for you to work with. NY unfortunately does not regulate its naturopaths, so odds are this won't be covered by insurance. 

Another suggestion if you decide to try any of this, working with a naturopath or not, is to subscribe to consumerlab.com for guidance on which brands of supplements you can trust. It's like Consumer Reports, except it focuses on vitamins, minerals, and supplements in its testing. Without regulation, the supplement industry is not always trustworthy and this site is the most unbiased source of information I've found so far. It hasn't tested every brand on everything available out there, but it keeps building and updating its library.

I know it's hard not to let the battle you are in get you down sometimes; it gets to all of us as we go through it, but you don't have an expiration date stamped on you yet. Those down days just give you a chance to let go of some emotional baggage that's weighing you down so you can keep moving forward. Cancer these days is not the cancer that we grew up hearing stories about. The science for treating and beating it has made tremendous leaps and bounds in just recent years, so ignore out-dated statistics and focus on doing what you have to do to live with it like you would if you were diagnosed with some other chronic disease. It's hard to see the light at the end of the tunnel because treatment seems to go on forever and it takes so much out of us, but it is doable and worth it when you reach the other side.

Best wishes

Pat (formerly of Orchard Park)

MAbound

Link

I couldn't find the one from Chris(Editgirl), but here's one specific to NY naturopathic oncologists.

https://www.healthprofs.com/us/naturopaths/oncology/new-york

LadyMox

Thanks for all the good

Thanks for all the good suggestions. I'm feeling better emotionally with the likleyhood the chemo is helping, but the proof will be in the CT scan when it happens.

From the biopsys they found mostly grade 2 with a small spot of grade 3. I'll know more once they clear me out.

Finally got my hair buzzed, that was tough since I've always had long, curly locks but hopefully it's for a good cause and it had gotten thin and patchy so it was time.

LisaPizza

LadyMox said:

Thanks for all the good

Thanks for all the good suggestions. I'm feeling better emotionally with the likleyhood the chemo is helping, but the proof will be in the CT scan when it happens.

From the biopsys they found mostly grade 2 with a small spot of grade 3. I'll know more once they clear me out.

Finally got my hair buzzed, that was tough since I've always had long, curly locks but hopefully it's for a good cause and it had gotten thin and patchy so it was time.

Beautiful picture! You remind

Beautiful picture! You remind me of my niece

LadyMox

LisaPizza said:

Beautiful picture! You remind

Beautiful picture! You remind me of my niece

That's my natural curly hair,

That's my natural curly hair, but I do color it. Ok so it's gone now, I got a decent curly wig but it's not as nice as my real hair. Hopefully I'll get past this and it will grow back someday.

NoTimeForCancer

LadyMox, cancer is

LadyMox, cancer is overwhelming, and everything you are feeling is normal.  I think all of us can remember exactly how you feel.  Take a breath.  Work that plan the doctor has set in front of you and check in with us.  You have thrown a lot of powerful chemicals at your body, so recovery from all of this takes time.  Hugs dear.

Wannabeatit

LadyMox said:

That's my natural curly hair,

That's my natural curly hair, but I do color it. Ok so it's gone now, I got a decent curly wig but it's not as nice as my real hair. Hopefully I'll get past this and it will grow back someday.

I never thought that I would

I never thought that I would like my hair short when it grew out. For over 30 years I had long blond wavy/curly hair and when my hair finally grew back I have gotten more compliments than having it long and it is so easy to manage. I think I will keep it this way for awhile. You may be pleasantly surprised. This picture is of me wearing a wig. I need to update it but it did give me a sneak peek into how I might look with it short. 

Wannabeatit

LadyMox said:

That's my natural curly hair,

That's my natural curly hair, but I do color it. Ok so it's gone now, I got a decent curly wig but it's not as nice as my real hair. Hopefully I'll get past this and it will grow back someday.

I never thought that I would

I never thought that I would like my hair short when it grew out. For over 30 years I had long blond wavy/curly hair and when my hair finally grew back I have gotten more compliments than having it long and it is so easy to manage. I think I will keep it this way for awhile. You may be pleasantly surprised. This picture is of me wearing a wig. I need to update it but it did give me a sneak peek into how I might look with it short. 

Soup52

LadyMox said:

Likley a good indicator on my

Likley a good indicator on my second chemo day. My CA-125 dropped from 120.9 to 36 between the first and second chemo. Will probably get a CAT scan to see if/how the tumor is shrinking after 1 or 2 more chemo of Taxol/Carbo.

I just had blood tests

I just had blood tests throughout chemo and then I didn’t have a scan until my six rounds of chemo were done. I know you are anxious as we all were, but unfortunately I find the cancer journey to be a marathon, not a sprint. My treatments including hysterectomy, radiation internal and external took a whole year. I have been clear ever since, so that’s 3 years since diagnosis grade 3 3 C stage. Keep the faith! We are all pulling for you!