Another recurrence
I was diagnosed with serous uterine carcinoma in 2012 when I had a complete hysterectomy and because the pathology report came back with no involvement anywhere but within my uterus, my oncologist and I opted for a plan where I would get CT scans every 3 months And no chemo. 2 years later it was back as a 1.2 cm. Spot on the lower lobe of my left !ung. I had "wedge" surgery to remove the tumor and got clean edges. After the surgery I had 6 cycles of carboplatin and taxil. My side effects were some nausea, hair loss, and fatigue. I took my anti-nausea meds as directed and that helped.
Well, it came back again, and to make it worse my GYN oncologist moved out of state so I needed to find a new doctor, and the protocols in his practice are that they refer all chemo patients to a medical oncologist, so I have continued on this journey with a new cast of medical professionals. We started treatment with Doxil. The plan was for 6 cycles with 4 weeks between treatments. I had my first treatment at the end of June. About a week after the second treatment I noticed that the palms of my hands and soles of my feet were red and sore. Within 10 days my reaction had increased to first and second degree burns over most of my body that made it nearly impossible to wear clothing, walk, use my hands, feed myself, or bathe. It was quite painful and humbling. We stopped the Doxil. By mid-September I was getting infusions of Avastin every two weeks. After the third infusion I started getting really bad headaches. We discovered they were caused by severely elevated b!old pressure. My normal BP is around 115/60. My BP at that time was 187/165. They sent me to the emergency room. It was there that I found out that elevated blood pressure is a known side effect of Avastin. After consults with my cardiologist, and at my request we stopped the Avastin, my BP is now back to normal. I had a CT scan after my 3rd dose of Avastin which showed that the node on my lung was gone and other suspicious areas were clear. Since my CA-125 numbers are still elevated (for me), we decided to finish off this course of treatment with 3 or 4 cycles of just carboplatin every 3 weeks. I am scheduled for the 2nd treatment on November 29th. I am hoping this puts me into remission for a while. My medical oncologist told my husband and I that we can expect the cancer to come back. I am still trying to come to terms with that fact. I feel like cancer is taking over my life and I don't like it. If the treatments didn't compromise my immune system it would be easier. I could go along with my everyday life, but it does so I have to think of things I love and do those things as long as I am not subjecting myself to possibly catching something. I recently let down my guard and have now had a cold for a week. I haven't had a cold in years! I know that getting an infection could kill me. I don't know if I can live this way indefinitely. Does anyone else have these issues? I feel so sorry for myself sometimes that I disgust myself. Even my dear husband who takes such good care of me doesn't know how depressed I get. Is this unusual? Should I be talking to my doctor abut this? It is my nature to keep smiling so I mask my depression and tell everyone what they want to hear.
I am so glad I found this group.
Carol
Comments
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Carol,
Carol,
I'm glad you found us too. And, I'm so sorry for this horrible news. I think it is completely normal to have tons of mixed feelings. This is such a hard thing to accept and work through. It sounds like you have gone through a lot of different chemos. I'm wondering if you and your doctor would consider trying the immunotherapy drugs that are just starting to be used? Something like Keytruda. One of our ladies is using it with good results so far....
Please don't mask anything from your doctors. They can't help you if they don't know what you are going through.
I hope you stay in remission for many years to come. Hopefully, they will have a CURE for us in the near future....
Love and Hugs,
Cindi
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Carol, first of all, welcome.
Carol, first of all, welcome. You are not alone and I hope getting some of this out to people who truly understand your thoughts and feelings help. It is so sad to hear what you have gone through and how you have suffered. While this is a great place to vent and look for help, I would also recommend finding a professional to talk to who may be able to help you with your depression. That is serious stuff and they can give you something to help you with it. Ask your doctor for a referral, if you work contact your EAP, or if you are religious asky your priest/pastor/minister for help.
We go through so much physically and it helps to talk about that to others who understand, your thoughts and feelings need as much care as your body.
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Hi, Carol
Glad you found us, but so sad that you had to,even look for this group. This,is,a,good,place to be . Th,ladies are great,with encouragement, support, and information. I wa also diagnosed in 2012. Had the sandwich treatment. And thought everything was ok, only to,have,it come back 7 months later. I was told then that I would be on chemo for the,rest of my life. i was also told that that could be a long time and that I,would have,chemo vacations in between. I have had two short vacations. I also had problems with Doxil. And I know that red burning. I had it only on my feet and legs though. More miserable than neuropath. I had to stop because it let the,larger tumors grow, one intwined in my intestines resulting in an open bowel resection. Tried Topotecan with no results, Tried Avastin and after two it caused a mild heart attack. I am now on an immunotherapy drug on a compassionate use program from the,manufacture. it may just be working.
The way you are feeling, I believe is,entirely normal. We are dealing with very difficult issues. I have been on almost constant chemo treatments for 3 years now, and it can be done. I have many more good days than bad. I have been able.to enjoy many of life's little pleasures and especially the love of family and,freinds. This last year was very hard for me ns after the Avastin "problem", I was ready,to,quite chemo,because all that was left was,harsh. Then this new chance landed in my lap. I feel better than I have for a very long time. There is always hope.
You are strong and,you,will make,it. Yes, tell your,doctor what is going on. There is meds that can help with depression.
Hugs and prayers, Lou Ann
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Helpful information for me!
Carol, Thanks for this post. I have been seeking opinions at a couple of national cancer institutes on my next treatment options, including clinical trials, since I have discovered I am platinum resistant (carbo/taxol) after 4 cycles and now diagnosed with recurrent uterine serous carcinoma from first biopsy in May until second in October; cancer has/is spreading into abdoman tissues and lymph nodes. One radiation oncologist advocated for using chemo and IMRT radiation but the consensus among the couple medical oncologists and GYN surgeon oncologists is to get back into chemotherapy soonest with a specific recommendation of Doxil and Avastin together. I was told side effects are milder than I what I experienced with carbo/taxol so your heads up along with the posts it generated have opened my eyes as to possible worse case effects. When I asked about keytruda, they cite a lack of research that this has been effective on serous endometrial cancer and do not recommend these trials at this time. The message is loud and clear is return to chemo and see which one can produce a favorable CAT scan. Looks like chemo for life is my future and I thank those of you who have shown this is a doable path ahead with hopefully more good days than bad days. Has anyone used IMRT radiation as part of treatment in recurrent serous disease?
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Carol, I echo everyones
Carol, I echo everyones sentiments that we are glad that you found us and that we hope being a part of this community is helpful to you. I don't have any suggestions for you but wanted to let you know that I am praying that your medical team can find a treatment plan that is effective - both in treating the cancer and giving you the quality of life that you deserve. Kim
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I am so sorry, Carol, that
I am so sorry, Carol, that the cancer has come back. This d*mn serous cancer is soooo sneaky. Just when you feel like you can breath again, it's back. I was Stage II, UPSC, but only made it through three chemos of Carboplatin/Taxotere before the side effects became life-threatening. A year later and I'm still dealing with side effect and waiting for that next shoe to drop.
You've come to a good place here. We've all been where you are! (((Carol))) You can come here and piss and moan and we'll all just huddle around you and hug you. NO one can understand what this is like unless you've gone through it. I have the most wonderful husband in the world - we've been together over 47 years, but he will not even discuss the possibility my cancer may come back.
Keep us updated!
Love,
Eldri
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Thank you all for your
Thank you all for your welcome and your thoughtful responses. It is so good to be in touch with women who are also fighting this same disease.
I am doing better emotionally and am spending Thanksgiving with my older daughter and her family and her in-laws who are all nice people. Today I went to help in the prep of the big meal and got lots of hugs from my 9-year-old granddaughter and 6-year-old grandson. A hug is the very best medicine sometimes. It reminds me why I need to keep fighting.
I hope all of you have a good Thanksgiving.
Carol
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(((HUGS))) 
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