CT done today

pinky104 said:

Today's Oncology Appointments

I saw the female PA at my oncologist's office today.  I love her bedside manner.  She hadn't gotten my colonoscopy report yet, so I showed her mine.  She looked at it and said she didn't know what the ulcerations were.  My husband asked if I could have ulcerative colitis.  She said that ulcerative colitis doesn't look anything like this, so she didn't think so.  She showed me the slices of the PET scan, going from the head down through the body. She said the good thing was that there was no cancer anywhere else in the body except for in that general area.  The mass takes up about all the empty space on the right side of my abdomen.  There's a little knob at the top of the mass that extends over toward the middle of the abdomen, and she's not sure if this could be cancer or not.  It's where the colonoscopy report shows the ulcerations.  

I showed her the case studies on Malignant Psoas Syndrome that I found on the Internet recently.  It was done on 3 gynecological cancer cases in Japan in 2018.  She thought I certainly had some of the aspects of that.  When I later saw the radiation oncologist, he said I absolutely have that.  I discussed the results with the PA, mentioning that two of the subjects died in 7 or 8 months, and one lived.  The one who had serous carcinoma had been one of the deaths, but that woman had refused chemo.  The one who lived had been the one who had taken TC chemo and Avastin.  I asked her if TC was Taxol and Carboplatin, but she thought not.  She said it was most likely Taxotere Cytoxin.  I know I don't want that because of the permanent hair loss it can cause.

I showed her the article on Herceptin, but she researched my HER 2 status, looking at my Foundation One report, and said it wouldn't work on me. She said the biopsy report on the intestinal ulcerations is sent out somewhere else besides my hospital, so she can't pull strings so easily to get the report finished faster. She wants me to come back in two weeks after my biopsy report is (hopefully) there, then either do chemo with Cisplatin, Gemzar, and Avastin if I have cancer in the colon, followed by radiation, or radiation first if I don't.  She didn't think I should have surgery on the intestine with having the ulcerations in multiple spots if they are malignant.  I pointed out that there were only two spots, but that didn't seem to make a difference.  She then sent me to see the radiation oncologist, saying that my two week appointment is tentative and that the radiation oncologist might have another take on my treatment, which he did. He hadn't seen either my PET scan report from two days ago or my colonoscopy report from yesterday. He also said he didn't know what the ulcerations in the transverse colon were.  He raised the possibility that they could be another cancer, like colon cancer.  He asked me how long I'd had my symptoms.  I explained what I'd been through with my orthopedist, who'd said I had greater trochanteric bursitis.  He flat out said that was ****.  Then I told him how my leg is very numb, and my neurologist had said I had meralgia paresthetica from either wearing my pants too tight or from fat pressing on the nerve going over my pelvis when I saw him this fall.  My husband then said he thought that was double ****, and the radiation oncologist said it was triple ****, or maybe even quadruple ****.  That about sums up how I'd felt all along.  He thought all my symptoms were being caused by the cancer.  He said I'd suffered long enough with this.  He also thought that the colon isn't resectable.  He's having me come in tomorrow to start radiation planning.  He's going to be discussing his plans with my oncologist's PA, the oncologist himself, and probably also my GYN/onc.  He wants to start radiation as early as this coming Monday.  He discussed two options, depending upon what the others say.  He'd like to do 10 treatments with high dose radiation, then have me go for chemo.  However, he might have me do low dose radiation for much longer and have me do chemo.  The two might overlap some of the time.  He said the side effects are mainly diarrhea, nausea, an increased risk of adhesions, and fatigue.  There's also a small chance of a bowel obstruction.  I know one of my sister's friends recently had two of those with her radiation.  I discussed radiation cystitis with him because I get recurrent UTI's. He thinks he can aim the beam so it doesn't hit my bladder.  I also think he's going to avoid radiating the intestine where the ulcerations are, having that treated by chemo instead, if it is, in fact, cancerous there. I'm glad this guy is getting the ball rolling because I've wondered how much longer I'm going to live with this.  He said the earlier we get things going, the better the chance that the nerves will come back.  Personally, I have my doubts that they'll ever recover.  I've had this way too long, since before my last recurrence.  When I didn't improve after surgery, I thought my nerves had probably been cut in surgery.  I should have realized that since my CA-125 never went down as low as it had in 2010, that meant that the cancer was still lurking in there.  The figure in 2017 after my recurrence surgery and up to this year was double what it had been after surgery in 2010.

I hope everyone gets together and agrees on radiation first, then chemo.  I will be very upset if I have to go through another surgery.  Thankfully, it seems like the odds are good for skipping that, after talking to these two.  I already have chemo induced anemia, so I'm sure that will only get worse with more chemo, but I still think I'd rather have chemo than surgery.  I hope I don't have a lot of radiation complications like many of you have had.  Wish me luck!    

Wow Pinky that is a lot to process. Sounds like your radiation oncologist is on the ball. Hoping and praying for the best...... and minimal side effects from your next treatment plan. xo

Armywife said:

Pinky!

I've just caught up on your posts.  It's so much to process for you, but I just want to encourage you about a couple of things.  First, girl, you are amazing.  You're the very definition of survivor!  Second, please know that I had taxotere, as did my sister-in-law, and both of us got every single hair back.  All of them.  If taxotere works to get you that survival, please don't let that scare you.  Much love and prayers.  

My hair came back after Taxotere, too! Well, except for my armpits and legs and I don't miss having to shave at all! 

https://www.livestrong.com/article/289067-list-of-foods-high-in-pectin/

https://www.livestrong.com/article/28882-list-foods-high-soluble-fiber/

https://www.livestrong.com/article/367234-list-of-vegetables-high-in-pectin/

Caveat on soluble fiber: start slowly because the Benefiber and beans can make you gassy if you jump in too fast. Oat meal is great, though.

I've been advised to stay away from fruit and potato skins because they are high in insoluble fiber, so that's maybe why apples give you trouble. Applesause shouldn't have that effect. 

pinky104 said:

To MoeKay

Wow, you may have my diagnosis exactly right.  I've used Aleve a lot over the years.  I complained about some abdominal pain at my physical at my PCP's office in early December.  I commented that the last couple of times I got it, I'd been eating broccoli before it happened.  He asked if I was eating broccoli raw, and I answered "sometimes."  He told me to always pressure cook it before I eat it.  Then he told me to avoid all corn, milk, cheese, and try to limit how much Aleve I take, saying it can do major damage to some internal organs.  I stopped using it then, went for Tylenol instead, but once or twice, what was supposedly my hip bursitis (really my cancer) was so painful that I took Aleve, too.  Where Aleve hadn't seemed to bother me at all previously, once he'd told me that, I noticed that I didn't feel well at all afterwards.  That was before Christmas when I took it.  I wonder if ulcers I may have developed back then could still be there.

I printed up the article and will show it to the radiation oncologist on Tues. and my regular oncologist's PA when I see her again in a couple of weeks.  Thank you for providing the information.

I just don't have the words to express how happy this exchange makes me. I love that we care about each other.. Care enough to google each other's symptoms, diagnoses, and treatment plans. This is such a scary disease. I am afraid of a recurrence every awake moment of my life. But this disease is less scary with you guys on my side. Even if I miss something I feel like you guys will catch it Thank you for being so wonderful, MoeKay! What an insightful observation. I wish I could meet all of you wonderful ladies to tell you how much you mean to me in person. 

pinky104 said:

Today's Oncology Appointments

I saw the female PA at my oncologist's office today.  I love her bedside manner.  She hadn't gotten my colonoscopy report yet, so I showed her mine.  She looked at it and said she didn't know what the ulcerations were.  My husband asked if I could have ulcerative colitis.  She said that ulcerative colitis doesn't look anything like this, so she didn't think so.  She showed me the slices of the PET scan, going from the head down through the body. She said the good thing was that there was no cancer anywhere else in the body except for in that general area.  The mass takes up about all the empty space on the right side of my abdomen.  There's a little knob at the top of the mass that extends over toward the middle of the abdomen, and she's not sure if this could be cancer or not.  It's where the colonoscopy report shows the ulcerations.  

I showed her the case studies on Malignant Psoas Syndrome that I found on the Internet recently.  It was done on 3 gynecological cancer cases in Japan in 2018.  She thought I certainly had some of the aspects of that.  When I later saw the radiation oncologist, he said I absolutely have that.  I discussed the results with the PA, mentioning that two of the subjects died in 7 or 8 months, and one lived.  The one who had serous carcinoma had been one of the deaths, but that woman had refused chemo.  The one who lived had been the one who had taken TC chemo and Avastin.  I asked her if TC was Taxol and Carboplatin, but she thought not.  She said it was most likely Taxotere Cytoxin.  I know I don't want that because of the permanent hair loss it can cause.

I showed her the article on Herceptin, but she researched my HER 2 status, looking at my Foundation One report, and said it wouldn't work on me. She said the biopsy report on the intestinal ulcerations is sent out somewhere else besides my hospital, so she can't pull strings so easily to get the report finished faster. She wants me to come back in two weeks after my biopsy report is (hopefully) there, then either do chemo with Cisplatin, Gemzar, and Avastin if I have cancer in the colon, followed by radiation, or radiation first if I don't.  She didn't think I should have surgery on the intestine with having the ulcerations in multiple spots if they are malignant.  I pointed out that there were only two spots, but that didn't seem to make a difference.  She then sent me to see the radiation oncologist, saying that my two week appointment is tentative and that the radiation oncologist might have another take on my treatment, which he did. He hadn't seen either my PET scan report from two days ago or my colonoscopy report from yesterday. He also said he didn't know what the ulcerations in the transverse colon were.  He raised the possibility that they could be another cancer, like colon cancer.  He asked me how long I'd had my symptoms.  I explained what I'd been through with my orthopedist, who'd said I had greater trochanteric bursitis.  He flat out said that was ****.  Then I told him how my leg is very numb, and my neurologist had said I had meralgia paresthetica from either wearing my pants too tight or from fat pressing on the nerve going over my pelvis when I saw him this fall.  My husband then said he thought that was double ****, and the radiation oncologist said it was triple ****, or maybe even quadruple ****.  That about sums up how I'd felt all along.  He thought all my symptoms were being caused by the cancer.  He said I'd suffered long enough with this.  He also thought that the colon isn't resectable.  He's having me come in tomorrow to start radiation planning.  He's going to be discussing his plans with my oncologist's PA, the oncologist himself, and probably also my GYN/onc.  He wants to start radiation as early as this coming Monday.  He discussed two options, depending upon what the others say.  He'd like to do 10 treatments with high dose radiation, then have me go for chemo.  However, he might have me do low dose radiation for much longer and have me do chemo.  The two might overlap some of the time.  He said the side effects are mainly diarrhea, nausea, an increased risk of adhesions, and fatigue.  There's also a small chance of a bowel obstruction.  I know one of my sister's friends recently had two of those with her radiation.  I discussed radiation cystitis with him because I get recurrent UTI's. He thinks he can aim the beam so it doesn't hit my bladder.  I also think he's going to avoid radiating the intestine where the ulcerations are, having that treated by chemo instead, if it is, in fact, cancerous there. I'm glad this guy is getting the ball rolling because I've wondered how much longer I'm going to live with this.  He said the earlier we get things going, the better the chance that the nerves will come back.  Personally, I have my doubts that they'll ever recover.  I've had this way too long, since before my last recurrence.  When I didn't improve after surgery, I thought my nerves had probably been cut in surgery.  I should have realized that since my CA-125 never went down as low as it had in 2010, that meant that the cancer was still lurking in there.  The figure in 2017 after my recurrence surgery and up to this year was double what it had been after surgery in 2010.

I hope everyone gets together and agrees on radiation first, then chemo.  I will be very upset if I have to go through another surgery.  Thankfully, it seems like the odds are good for skipping that, after talking to these two.  I already have chemo induced anemia, so I'm sure that will only get worse with more chemo, but I still think I'd rather have chemo than surgery.  I hope I don't have a lot of radiation complications like many of you have had.  Wish me luck!    

First of all I am praying very hard for you.  I saw your comment and wanted to give you a perspective from someone who just finished four rounds of Taxotere and Cytoxan in 2017  for breast cancer.  I did lose my hair beginning two weeks after my first treatment but my hair has grown back and I have a head full of it.  It did grow back curly which is not what it was like prior to treatment but that's ok.  I did take biotin everday before during and after treatment.  I know that everyone is not alike but thought you might like some assurance from someone who has taken the chemo drugs you mentioned.