TGIF..and on to other things!

daylady

An update!  After 48 hours on prednizone (massive dose) the pain in my feet has subsided to where I can walk normally.  Still can't get shoes on, but that will come.  The chemo burn/rash is massive and going to take some time.  Slightly better this morning, and didn't need pain pills last night so that's progressing too.  Really want to use this "down time" to think about what I know, and don't know, about what has happened to me.  The UPSC does not fit into a neat, identifiable package.  I think it is slightly different for everyone.  I had practically every risk factor out there going into this...massive stress (CEO/President of million dollar + co. for over 20 years), lost both my parents in the last five years, overweight, diabetic.  I was kind of a petri dish for UPSC.  Went thru surgery, chemo, radiation, and reached NED, but it didn't even last 6 mo.  Now with this second round, it appeared to be working,  but  I had a massive toxic reaction to Doxil, and everything I've read seems to point to UPSC being chemo resistant and remission periods after recurrence being short.  I sense that once you get past the first line of treatment with UPSC, you enter the world of conventional medicine trial and error.  No one really has any solid answers. 

I have now retired and my finances are good so stress is not an issue.  My family support is second to none.  I got my diabetes completely under control to where we are talking about taking me off medication.  I completely changed my diet, and my husband and I started a walking program to where we were walking 5 miles a day and I had lost almost 50 pounds, now just 8 pounds from my goal weight.  I was in the best health ever, and yet the cancer came back!

I know that so far my disease has not progressed to any major organs, there are no major tumors, and no masses.  My initial treatment was successful, but they did not remove lymph nodes during my hysterectomy and in retrospect, I think that may have been a mistake as that is where the recurrence occurred.  One possibility discussed with my oncologist was going back to my surgeon and asking if surgery is an option at this point.  She inititally suggested chemo because of multiple nodes being involved.  I'm not sure about the risks/side effects of that surgery, but I am very afraid that continued chemo is going to just continue to break down my immune system (which has always been strong) to where my body can't fight.  My oncologist discussed alternatives to Doxil but many have the same side effects.  I suggested Avastin and she wasn't enthusiastic at first but ended up putting it on my list.  My CA 125 was 11 when this strted, and got down as low as 6 after the first treatment.  It got up to 49 with the recurrence, and the last test came back at 17 after the first two Doxil treatments.  The CA 125 does appear to be a useful marker for me, but the standard ranges are not.  35, for me, is an indicator of trouble.  Normal is probably in the single digits.  

Has anyone had any long term remissions with conventional therapies that they have confidence in?  Has anyone tried alternative approaches with success?  I actually read a study this morning about a case where a woman with UPSC underwent several rounds of conventional chemotherapy without much success.  Then they suspected she might have MCAS (which a high percentage of menopausal women have), treated her with 10 mg. of Loratadine (Claritan) 2x a day, plus 325 mg. of aspirin and it cured both the MCAS and the UPSC!!! Below is the link if anyone is interested. 

http://www.cancernetwork.com/login?referrer=http%3A//www.cancernetwork.com%2Fimproved-metastatic-uterine-papillary-serous-cancer-outcome-treatment-mast-cell-activation-syndrome

AWK

Thanks for sharing this.

I too am trying to glean all I can about this as my experience has only been progression and now stability.  I am two years in now.  My doctors emphasize stress and family history in our discussions.  My family history is more on my father's side despite my mom's history of triple negative breast cancer.  

Also, there is a clinical trial out there for cabozantinib that is in phase two and showing great promise.  I was rejected due to a tumor in my pericardial sac on my heart but had gone all the way through until the day I was supposed to start.  It is an orphan drug and being tested on a number of cancers and is FDA approved already for I think prostate and lung.

Scans on this Monday and hoping for stability or possibly shrinkage of my tumors.  I continue to work a fairly demanding job although my boss and I are tweaking my schedule to fit my energy ebbs and flows.  My husband, doctors and I continue the dialogue about going back on leave or permanent disability but for now I am enjoying the job and handling my responsibilities there with success.  I take it a day at a time.  

All of my pelvic lymph nodes were removed suring my original surgery, three of them were malignant.  the first opinion had me at Stage IIIC, second at IVa.  The difference of opinion being the distance of the furthest met from the uterus and its involvement of the para aortic artery.  Either way initial treatments would have been the same.

Let's keep sharing on this.  I know the other ladies on a longer journey, like Ro, have been a huge inspiration to me.

 

Lou Ann M

AWK said:

Thanks for sharing this.

I too am trying to glean all I can about this as my experience has only been progression and now stability.  I am two years in now.  My doctors emphasize stress and family history in our discussions.  My family history is more on my father's side despite my mom's history of triple negative breast cancer.  

Also, there is a clinical trial out there for cabozantinib that is in phase two and showing great promise.  I was rejected due to a tumor in my pericardial sac on my heart but had gone all the way through until the day I was supposed to start.  It is an orphan drug and being tested on a number of cancers and is FDA approved already for I think prostate and lung.

Scans on this Monday and hoping for stability or possibly shrinkage of my tumors.  I continue to work a fairly demanding job although my boss and I are tweaking my schedule to fit my energy ebbs and flows.  My husband, doctors and I continue the dialogue about going back on leave or permanent disability but for now I am enjoying the job and handling my responsibilities there with success.  I take it a day at a time.  

All of my pelvic lymph nodes were removed suring my original surgery, three of them were malignant.  the first opinion had me at Stage IIIC, second at IVa.  The difference of opinion being the distance of the furthest met from the uterus and its involvement of the para aortic artery.  Either way initial treatments would have been the same.

Let's keep sharing on this.  I know the other ladies on a longer journey, like Ro, have been a huge inspiration to me.

 

Hi

We are sure on the same journey.  When I had an echocardiogram before starting Doxil it showed a thickening of of paracardial lining with evidence of matiastitic disease.  I didn't know you could even develope cancer there.  I am hoping Doxil works for me.  i would sure like a chemo holiday.  Lou Ann

AWK

Lou Ann M said:

Hi

We are sure on the same journey.  When I had an echocardiogram before starting Doxil it showed a thickening of of paracardial lining with evidence of matiastitic disease.  I didn't know you could even develope cancer there.  I am hoping Doxil works for me.  i would sure like a chemo holiday.  Lou Ann

Keeping you in my prayers.

I hope it works for you!  When they told me about the one tumor on my heart, out of all of the five, I couldn't believe that things could get worse in terms of news.  But here I am almost a year later plugging away!  Hang tough.  Sending hugs.

PS. Did you get to see the three d image of your heart?  So fascinating!

Anne

Lou Ann M

AWK said:

Keeping you in my prayers.

I hope it works for you!  When they told me about the one tumor on my heart, out of all of the five, I couldn't believe that things could get worse in terms of news.  But here I am almost a year later plugging away!  Hang tough.  Sending hugs.

PS. Did you get to see the three d image of your heart?  So fascinating!

Anne

3 D

I don't think I saw  3D picture   I did watch while the tech did it   I found it interesting to hear the swish swish of my heart beat.  I was busy worrying about laying on the narrow table.  I seem to developed a real fear of narrow tables from radiation.  I am afraid I will fall off.  Lou Ann