Diagnosed with stage IVB Endometrial cancer

LadyMox

I'm 42 years old. I'm overweight but otherwise have been in good health till now 

About maybe 10 weeks ago I noted my belly was getting more solid, but I am overweight and was purposly losing weight. Then I had a super heavy period for 2 weeks that left me weak for a few days but I assumed it was blood loss and took iron pills. I immediately decided to make appointment with my doctor but ended up in the ER a fews days before my appointment.

About 6 weeks ago I had a bout of septis(which I thought was food posioning for the first 12 hours) that took me to the ER having to be carried out of my house. They noticed a large grapefruit sized mass over my right ovary. Seems I had a lot of fluid in my abdomen and it messed with my kidney, some sort of infection in the fluid. Besides muscle weakness that'st getting better bounced been ok, and my kidney is fine now. 

After going to a cancer hospital and more tests over the following weeks they did remove 3.2 liters of fluid from my belly in almost felt normal. Pap smear was clear.. clear tests had to decide if it was ovarian or uterine and they decided upon Endometrial  cancer stage IVB, Metastatic adenocarcinoma. I know the cancer is all in my reproductive system and in my abdomen but I major organs are clear as of right now.

 

I started chemo 2 days ago and so far I tolerated the Taxol/Carbo well, though it's my first dose. Also taking CBD oil to help with side effects. Of course I have no idea if this chemo will work but I'm trying to hope. They are trying to chemo me first, then surgery if it goes well and then more chemo.

 

I'm terrified reading the stats I see online. I'm trying to hope beyond hope they can at least get me into remission but it don't seem so likey. I'm trying and fighting the best I can.

 

 

oldbeauty

So young!

Welcome, LadyMox.  So sorry you needed to find this cancer board, but so it goes.  Many ladies will answer your call for comfort and help.  You are early in the game and don't count yourself out.  Uterine cancer is not as well supported with research as other types of cancers and the statistics you are reading are outdated.  Ignore them.  Focus, instead, on taking good care of your health while you get thru the chemo.  It is wonderful that you were on a weight loss regimen at the time of your diagnosis.  With suitable medical support, continue to eliminate unhealthy sugar and carbohydrates from your diet and to make sure to get enough protein to rebuild your resources that chemo will challenge.  Part of your fear, perhaps, stems from the fact that you have not yet undergone surgery, where the extent of involvement and the actual pathology of your cancer will be determined.  Still, we all know the dread of a cancer diagnosis and perhaps a feeling of impending doom.  But there are many, many women here, me included, who have lived with this disease for years.  No reason you should not be one of them.  Be certain you have the best practitioner in your area that your insurance will provide access to.  That practitioner should be a gynecological oncologist, although you may also have a medical oncologist involved instead or in addition at this point in your treatment.  There are other coping strategies that your providers or area cancer support services may steer you to.  But know that you are not alone when you come here and any question you may have has probably been faced and addressed by many here.  So, try to act one day at a time and build your health and knowledge up to take on this disease for its duration.  Best wishes. Oldbeauty

Northwoodsgirl

LadyMoxerstand

LadyMox, First I am so sorry that you have cancer! This forum is a great place to get support and ask questions.

Sounds like you have been through a lot even before your diagnosis. Please remember that you are a unique individual and the statistics are not a good predictor of your future. Try to stay focused on taking one day at a time and don’t worry or think too much ahead of where you are in your treatment plan. 

Chemo is “doable” and the best thing you can do is drink water to flush chemo out of your system and eat as healthy as you can. Also make sure to get some Miralax powder or something to keep from getting const from chemo. You can get it from the drugstore without a prescription. Also try to get a walk or some sort of physical activity every day to help with overall well being. Many of us had surgery, then chemo (carboplatin/taxol), and radiation. Having chemo then surgery is common when the cancer has spread as yours apparently has. There are women who have had stage IV cancer who are survivors and their cancer is treated like a chronic condition so there definitely is hope! 

We understand how scary cancer is. Please know there are many women on this discussion board who will answer questions and offer support. Stay strong-remember you are stronger than you think and you will experience a variety of feelings an emotions as you fight the battle of cancer. 

Keep the faith and hope, 

Lori

Armywife

Hugs to you

I'm a Stage IVB patient as well, approaching my one-year mark from finishing treatment.  Hang in there!  Do the next right thing, which is rest and get through chemo.  Totally do-able - I'm living proof!  I'd recommend icepacks or mitts to put on your hands and feet during infusion - I believe it helped me immensely not to end up with neuropathy.  Don't look too far ahead.  You'll finish chemo (you will!)  and then you'll have surgery, and they'll remove all the bad stuff.  Then you'll take the next step.  In the meantime, find the joy in every day.  A nice cold glass of water?  A delicious meal?  A card from a friend?  Some sweet quiet time with Jesus?  And then be the joy - write a card, send a meal, pray for someone else.  This is really what life's about.  Much love.  We are here for you.

NoTimeForCancer

LadyMox, such good ideas

LadyMox, such good ideas already shared with you by the ladies so far.  It is all overwhelming, but try to take a breath.  Know that you are not alone and you can ask us anything.  Please let us know how it is going.

LadyMox

I took the chemo well the

I took the chemo well the first day or two but now I'm in horrible muscle pain. Been trying to figure what might help (trying a few suggestions I've read about). I am going back to work in 2 days too which I'm not sure how exactly I'm going to pull it off, but I'll try. I was just starting to feel like a normal person after the septis and now the pain is misery from the chemo.

Armywife

LadyMox said:

I took the chemo well the

I took the chemo well the first day or two but now I'm in horrible muscle pain. Been trying to figure what might help (trying a few suggestions I've read about). I am going back to work in 2 days too which I'm not sure how exactly I'm going to pull it off, but I'll try. I was just starting to feel like a normal person after the septis and now the pain is misery from the chemo.

Hopefully

Hopefully the pain and misery you're having right now wil literally lift in just another day or two.  At least in my experience, I felt good on infusion day and for another two days after that.  By day 4, I felt awful, and that stayed around for up to a week.  Sometime around day 10 or 11, I started feeling pretty good - great even!  And then on Day 21 it was time to go start over.  

 

Jairoldi

Armywife said:

Hopefully

Hopefully the pain and misery you're having right now wil literally lift in just another day or two.  At least in my experience, I felt good on infusion day and for another two days after that.  By day 4, I felt awful, and that stayed around for up to a week.  Sometime around day 10 or 11, I started feeling pretty good - great even!  And then on Day 21 it was time to go start over.  

 

Same

What Armywife said is how it worked for me with carbo/taxol. When I was switched to carbo/taxotere I had an easier time of it.

MugsBugs

LadyMox said:

I took the chemo well the

I took the chemo well the first day or two but now I'm in horrible muscle pain. Been trying to figure what might help (trying a few suggestions I've read about). I am going back to work in 2 days too which I'm not sure how exactly I'm going to pull it off, but I'll try. I was just starting to feel like a normal person after the septis and now the pain is misery from the chemo.

Muscle Pain

I am so sorry you are going through this.  You are so young!  I read (on this board and other places) that Claritin (over the counter allergy medicine) helped with muscle pain from chemo. It might be worth checking with your doctor.

Prayers!

 

Unknown

oldbeauty said:

So young!

Welcome, LadyMox.  So sorry you needed to find this cancer board, but so it goes.  Many ladies will answer your call for comfort and help.  You are early in the game and don't count yourself out.  Uterine cancer is not as well supported with research as other types of cancers and the statistics you are reading are outdated.  Ignore them.  Focus, instead, on taking good care of your health while you get thru the chemo.  It is wonderful that you were on a weight loss regimen at the time of your diagnosis.  With suitable medical support, continue to eliminate unhealthy sugar and carbohydrates from your diet and to make sure to get enough protein to rebuild your resources that chemo will challenge.  Part of your fear, perhaps, stems from the fact that you have not yet undergone surgery, where the extent of involvement and the actual pathology of your cancer will be determined.  Still, we all know the dread of a cancer diagnosis and perhaps a feeling of impending doom.  But there are many, many women here, me included, who have lived with this disease for years.  No reason you should not be one of them.  Be certain you have the best practitioner in your area that your insurance will provide access to.  That practitioner should be a gynecological oncologist, although you may also have a medical oncologist involved instead or in addition at this point in your treatment.  There are other coping strategies that your providers or area cancer support services may steer you to.  But know that you are not alone when you come here and any question you may have has probably been faced and addressed by many here.  So, try to act one day at a time and build your health and knowledge up to take on this disease for its duration.  Best wishes. Oldbeauty

Great advice

Thanks for your post, oldbeauty! I needed to read this today. 

christine8822

We're with you

Hi LadyMox: Just remember you are not alone. All of us on this board have had one form or another of uterine cancer. We all know what you are going through, and we are all pulling for you. Keep hope alive, and let your friends and family help you through this.

cmb

Bone pain

There was a thread earlier this year that discussed bone pain after chemo. You can read what I (and others) found to work/not work for this at:

https://csn.cancer.org/node/314595

Hope something suggested there helps.

linmk

Muscle Pain & Glutamine

Cmb, interesting to hear about using Claritin for pain relief. I may try that too. LadyMox, I too have endometrial cancer stage IVB. Like you I had chemo (Taxol,carboplatin) first. To the surprise of my doctor, it successfully shrunk my tumors and my uterus turned into a calcified mass which was removed with laproscopic surgery. I don't think my doctor initially thought that the chemo would help, but I turned out to be one of the lucky ones at that time. Unfortunately three months after the hysterecomy the cancer came back. I went through two clinical trials including immunotherapy and a couple months treatment of gemzar and cisplatin chemo--none of which helped. I am now on a regime of Taxol and Avastin chemo.--jury is out on how successful this is, but I am feeling much better. Anyway,I wanted to tell you that I too have been experiencing muscle pain in my lower legs (like shin splint pain) and my left knee which is prone to arthritis has also been hurting--all due to Taxol, so I understand. Pain pills did not help me. A week ago or so I started glutamine in powder form, which I had read about in the forums. I took it to help with neuropathy but it also has helped greatly lessen the muscle pain. I'm not popping the pain pills like I did for awhile,  and I think that it has helped me from crashing on the second day after chemo. At least it did a couple of weeks ago when I had chemo. I had chemo this past Wed., so I'll know by tomorrow, Friday, if it has helped this second time.  Good luck!

 

 

 

 

 

CheeseQueen57

linmk said:

Muscle Pain & Glutamine

Cmb, interesting to hear about using Claritin for pain relief. I may try that too. LadyMox, I too have endometrial cancer stage IVB. Like you I had chemo (Taxol,carboplatin) first. To the surprise of my doctor, it successfully shrunk my tumors and my uterus turned into a calcified mass which was removed with laproscopic surgery. I don't think my doctor initially thought that the chemo would help, but I turned out to be one of the lucky ones at that time. Unfortunately three months after the hysterecomy the cancer came back. I went through two clinical trials including immunotherapy and a couple months treatment of gemzar and cisplatin chemo--none of which helped. I am now on a regime of Taxol and Avastin chemo.--jury is out on how successful this is, but I am feeling much better. Anyway,I wanted to tell you that I too have been experiencing muscle pain in my lower legs (like shin splint pain) and my left knee which is prone to arthritis has also been hurting--all due to Taxol, so I understand. Pain pills did not help me. A week ago or so I started glutamine in powder form, which I had read about in the forums. I took it to help with neuropathy but it also has helped greatly lessen the muscle pain. I'm not popping the pain pills like I did for awhile,  and I think that it has helped me from crashing on the second day after chemo. At least it did a couple of weeks ago when I had chemo. I had chemo this past Wed., so I'll know by tomorrow, Friday, if it has helped this second time.  Good luck!

 

 

 

 

 

Medical marijuana

Is it legal in your state?  I’d consider it if it is. 

LadyMox

 

 

Seems after about a week some of the chemo symptoms are dying down, still just a week in so still have my hair. I am trying to get back to work, but only managed 3.5 hours yesterday but at least it is something.  My workplace has been very flexible with me about it thankfully and I can work as little or much as needed/wanted.

I am trying to take some gluamine in hope it helps with the next round of muscle pain.

I am just so scared, I try to be positive but the stats are daunting. just 2 months ago I was doing retirement planning (20 years in the future since I am 42). Are there survivors of this at a such late stage of 5, 10, or 15 years? I know it difficult because the tech of medicine moves forward fast and what they used even 10 years ago is different. Seems like the best chance I have is if they get this out of me, I go into remission and I get really lucky and it’s all gone for good. Though I suppose closely monitored, maybe even it coming back might be manageable.

Medical Marajuna is legal in my State (NY), I have considered it but haven't persued it. I am taking CDB oil, which is close without the trippiness which was recommened to me by a nurse I know.

LadyMox

linmk said:

Muscle Pain & Glutamine

Cmb, interesting to hear about using Claritin for pain relief. I may try that too. LadyMox, I too have endometrial cancer stage IVB. Like you I had chemo (Taxol,carboplatin) first. To the surprise of my doctor, it successfully shrunk my tumors and my uterus turned into a calcified mass which was removed with laproscopic surgery. I don't think my doctor initially thought that the chemo would help, but I turned out to be one of the lucky ones at that time. Unfortunately three months after the hysterecomy the cancer came back. I went through two clinical trials including immunotherapy and a couple months treatment of gemzar and cisplatin chemo--none of which helped. I am now on a regime of Taxol and Avastin chemo.--jury is out on how successful this is, but I am feeling much better. Anyway,I wanted to tell you that I too have been experiencing muscle pain in my lower legs (like shin splint pain) and my left knee which is prone to arthritis has also been hurting--all due to Taxol, so I understand. Pain pills did not help me. A week ago or so I started glutamine in powder form, which I had read about in the forums. I took it to help with neuropathy but it also has helped greatly lessen the muscle pain. I'm not popping the pain pills like I did for awhile,  and I think that it has helped me from crashing on the second day after chemo. At least it did a couple of weeks ago when I had chemo. I had chemo this past Wed., so I'll know by tomorrow, Friday, if it has helped this second time.  Good luck!

 

 

 

 

 

Good luck, hopefully the

Good luck, hopefully the chemo is zapping those nasty buggers.

LadyMox

My CA-125 levels have done

My CA-125 levels have done weird things. When I was just out of the ER hospital the first time it was 1700, a few weeks later it was 1100 and my last CA-125 check just before my first chemo it was 120 (still high but better then 1700!). I do know while my tumor over my right ovary is large (grapefruit), it did shrink a little between my CAT scan at the ER and one a few weeks later at the cancer hospital (Roswell Park in Buffalo,NY).  I did have a lot of fluid in my belly so maybe that threw it off when they removed 3.2 liters of fluid, or maybe the CA 125 levels don’t mean much.

 

cmb

LadyMox said:

 

 

Seems after about a week some of the chemo symptoms are dying down, still just a week in so still have my hair. I am trying to get back to work, but only managed 3.5 hours yesterday but at least it is something.  My workplace has been very flexible with me about it thankfully and I can work as little or much as needed/wanted.

I am trying to take some gluamine in hope it helps with the next round of muscle pain.

I am just so scared, I try to be positive but the stats are daunting. just 2 months ago I was doing retirement planning (20 years in the future since I am 42). Are there survivors of this at a such late stage of 5, 10, or 15 years? I know it difficult because the tech of medicine moves forward fast and what they used even 10 years ago is different. Seems like the best chance I have is if they get this out of me, I go into remission and I get really lucky and it’s all gone for good. Though I suppose closely monitored, maybe even it coming back might be manageable.

Medical Marajuna is legal in my State (NY), I have considered it but haven't persued it. I am taking CDB oil, which is close without the trippiness which was recommened to me by a nurse I know.

Odds are constantly changing

LadyMox,

In 1980, my mother was diagnosed with cervical cancer. I don't know her original stage since my parents didn't keep any records that showed this, nor do I remember asking. Pre-internet there wasn't much information readily available either. But I suspect that it was a later stage since she struggled with this cancer right from the beginning and for the next 7-8 years, trying different chemotherapies and having multiple surgeries as the cancer spread.

Finally she saw a different oncologist in 1987 who wanted her to try a new chemotherapy that had just been approved by the FDA. It was a rigorous regimen that had her stay in the hospital for several days every 3-4 weeks while receiving treatment.

This treatment actually worked and put her in remission for the remainder of her life. When she died several years later (she was in her mid-70s at that time) she was still cancer-free. So new therapies can indeed come along and work for seemingly intractable conditions.

I am Stage IIIB with another aggressive type of cancer (uterine carcinosarcoma or MMMT). Even two years ago when I was diagnosed, the odds for long-term survival of my type of cancer weren't very good. But about 6 months after my surgery, the FDA approved the use of immunotherapy for cancer patients like myself who have a particular genetic mutation (Lynch Syndrome) when their cancer recurs. While no guarantee, this increases the chance I can have a long period of remission, even if my cancer returns.

And just last month, the FDA granted a breakthrough therapy designation to the combination of Lenvima (lenvatinib) and Keytruda (pembrolizumab) for the treatment of patients with advanced and/or metastatic endometrial carcinoma who do not have my kind of mutation (the majority of patients) and who have progressed after at least one prior systemic therapy. See derMaus' post at https://csn.cancer.org/node/317445

More women than ever before are living with with late stage cancer as a chronic disease. But for now, just try to focus on getting through your treatments as well as you can.

LadyMox

cmb said:

Odds are constantly changing

LadyMox,

In 1980, my mother was diagnosed with cervical cancer. I don't know her original stage since my parents didn't keep any records that showed this, nor do I remember asking. Pre-internet there wasn't much information readily available either. But I suspect that it was a later stage since she struggled with this cancer right from the beginning and for the next 7-8 years, trying different chemotherapies and having multiple surgeries as the cancer spread.

Finally she saw a different oncologist in 1987 who wanted her to try a new chemotherapy that had just been approved by the FDA. It was a rigorous regimen that had her stay in the hospital for several days every 3-4 weeks while receiving treatment.

This treatment actually worked and put her in remission for the remainder of her life. When she died several years later (she was in her mid-70s at that time) she was still cancer-free. So new therapies can indeed come along and work for seemingly intractable conditions.

I am Stage IIIB with another aggressive type of cancer (uterine carcinosarcoma or MMMT). Even two years ago when I was diagnosed, the odds for long-term survival of my type of cancer weren't very good. But about 6 months after my surgery, the FDA approved the use of immunotherapy for cancer patients like myself who have a particular genetic mutation (Lynch Syndrome) when their cancer recurs. While no guarantee, this increases the chance I can have a long period of remission, even if my cancer returns.

And just last month, the FDA granted a breakthrough therapy designation to the combination of Lenvima (lenvatinib) and Keytruda (pembrolizumab) for the treatment of patients with advanced and/or metastatic endometrial carcinoma who do not have my kind of mutation (the majority of patients) and who have progressed after at least one prior systemic therapy. See derMaus' post at https://csn.cancer.org/node/317445

More women than ever before are living with with late stage cancer as a chronic disease. But for now, just try to focus on getting through your treatments as well as you can.

I know I'm so very early in

I know I'm so very early in the treatment process. If I'm lucky standard stuff will work, but nice to know there is new science out there to potentially help even if no guarantees. I've read how they are working on programming nanobots to kill cancer, even if years away; As a science fiction fan, it's facinatating. 

linmk

LadyMox said:

My CA-125 levels have done

My CA-125 levels have done weird things. When I was just out of the ER hospital the first time it was 1700, a few weeks later it was 1100 and my last CA-125 check just before my first chemo it was 120 (still high but better then 1700!). I do know while my tumor over my right ovary is large (grapefruit), it did shrink a little between my CAT scan at the ER and one a few weeks later at the cancer hospital (Roswell Park in Buffalo,NY).  I did have a lot of fluid in my belly so maybe that threw it off when they removed 3.2 liters of fluid, or maybe the CA 125 levels don’t mean much.

 

CA-125

The CA-125 levels mean something, but what that is is debatable. The fact that the number is decreasing is encouraging, but not definitive.  CA-125 levels can increase due to inflamation as well as cancer spread, but some people have low CA-125 levels and the cancer has still spread. If your tumor over the right ovary has shrunk that is very good news. I wish for your continued improvement.

pinky104

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.