Diagnosed with stage IVB Endometrial cancer

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 Uterine cancer is not as well supported with research as other types of cancers and the statistics you are reading are outdated.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

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.

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.  

 

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.

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 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!

 

 

 

 

 

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

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.

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 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.

 

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.