Round 3

Doxil
After 5 infusions I almost feel as if I am not recv'ng chemo at all. I do have some fatigue. Rashy areas on my feet, legs and abdomen. Mouthsores that quickly resolve with the prescription oral rinse. All these symmptoms are managable. I would happily stay on this medication forever. Not sure if it is working for me though. After my 3rd infusion the PETscan showed slightly increased activity. Medical team decided to stay with it for a few more infusions. CA125 is holding steady. I will have another PET after my 6th infusion. CA125 as follows: 15 starting, 30 after 1st infusion, 18 after 2nd , 22 after 3rd , 19 after 4th. I will go for post 5th infusion blood work in 3 wks. Hoping with all my heart it continues to come down. If not, Topotecan will be my next option. Let me know how you make out.

Hissy_Fitz said:

Nancy....what does increased
Nancy....what does increased activity on the CT scan mean? I didn't get any particulars with my last scan, other than my Gyn/Oncologist said it was NED. I probably need to educate myself on PT scans......what they show, what the results mean, etc.

I remember reading something about an SUV number and the CT scan having some significance. Did I dream that?

Carlene

Glad you folks are doing
Glad you folks are doing well on Doxil. My doc changed me over rather quickly to Gemzar after some skin problems, low counts, etc. after only 2 cycles.

@Carlene, CT scans show structural changes/abnormalities - tumors, enlarged lymph nodes, organs/blood vessels out of place, etc. PET scans utilize radioactive glucose to look for areas of above normal uptake(SUV)which tends to be higher in active - hungry! - cancer cells. There are standards above which is more likely to indicate cancerous cells. I think Linda P. may have posted about this. The combo of CT/PET aligns these results to give a more complete picture.
Annie

upsofloating said:

Glad you folks are doing
Glad you folks are doing well on Doxil. My doc changed me over rather quickly to Gemzar after some skin problems, low counts, etc. after only 2 cycles.

@Carlene, CT scans show structural changes/abnormalities - tumors, enlarged lymph nodes, organs/blood vessels out of place, etc. PET scans utilize radioactive glucose to look for areas of above normal uptake(SUV)which tends to be higher in active - hungry! - cancer cells. There are standards above which is more likely to indicate cancerous cells. I think Linda P. may have posted about this. The combo of CT/PET aligns these results to give a more complete picture.
Annie

Gemzar
How is the Gemzar going? The GYN oncologist is now recommending Topotecan if the Doxil doesnt' work. Originally I thought it would be Gemzar but now I think they are thinking Topo.

nancy591 said:

PET/CT
My medical team now relys on PET/CT to monitor me. My ca125 has been normal, although rising, since my recurrence. It is not a reliable marker for me anymore.

My latest PET/CT was done in March. CT was normal, no areas seen (weired, right?) PET showed my recurrence uptake went from 4.7 to 6.5 and unfortunately a new spot with an uptake of 3.6 was also seen. Anything over 2.5 is considered malignant. There was a 2 month lag from my original PET/CT (nov. '08) until I restarted chemo (Jan. '10). My post 3rd dose infusion PET was done in March which showed the increased activity from the original PET/CT. My scan overall really isn't that bad. My oncologist told me I probably still be 'undiscovered' if it wasn't for my surgeon pushing for the PET/CT. She pushed for it because I was having lots of bowel symptoms. The ironic thing is that the symptoms just went away with diet modifications before I re-started chemo. I had my last 'bowel pain episode' in October and I restarted chemo in January.

I really think your
I really think your team/treatment is cutting edge, Nancy. I wish my doctor did PET (or PET/CT) scans. That's one of my few complaints about him (that and his refusal to allow be to do IP chemo).

I had several hours of pain in my belly the other night and let me just say, it got my attention. Felt just like the bowel obstruction, but only about half as painful.

I used to be the woman with the cast iron stomach, but not now.

Carlene

Hissy_Fitz said:

I really think your
I really think your team/treatment is cutting edge, Nancy. I wish my doctor did PET (or PET/CT) scans. That's one of my few complaints about him (that and his refusal to allow be to do IP chemo).

I had several hours of pain in my belly the other night and let me just say, it got my attention. Felt just like the bowel obstruction, but only about half as painful.

I used to be the woman with the cast iron stomach, but not now.

Carlene

stomach pain
My pain was pain that felt like a bowel obstruction. I would get an episodes averaging once a month. I even started throwing up with these episodes. It started 2 months after I completed chemo. I would go to the ER, they would do a CT scan and there would be no bowel obstruction seen. Lots of gas in my colon but no obsruction. It was/is very scary. I too considered myself to have a stomach of steel! At the time of these episodes I was trying to eat very healthy. I was eating about 3-4 servings EACH of vegetables and fruit. I was eating 3 different types of nuts brazilian, almonds and walnuts daily (small servings each) and I was consuming flax seed daily. I think all this was too much for my bowels. Everytime I'd have an episode I would consume clear liquids and slowly advance to solids. Eventually I start adding the fruits, veggies, etc. The I'd be back with this stomach pain again. I would not believe this 'healty' diet was the cause. Well I cut out the nuts totally. I eat vegetables once daily. I make sure I drink 64oz of water a day and I eat prunes daily. Since then I have not had any bowel pain. My surgeon was convinced it was a growing spot of cancer pulling at my intestines. I am still not convinced it was the cancer causing my bowel symptoms. Like I said, I hadn't had an episode since October and I didn't start chemo until Jan.

Whenever I wonder how/why I had a recurrence when other women have not. I tell myself that I am being treated at a leading cancer center. I just have very aggressive cancer. I was never sick prior to being diagnosed. I always considered myself to have a great immune system. I was convinced I would be one of those women who would go a long time. It is all so disappointing.

nancy591 said:

stomach pain
My pain was pain that felt like a bowel obstruction. I would get an episodes averaging once a month. I even started throwing up with these episodes. It started 2 months after I completed chemo. I would go to the ER, they would do a CT scan and there would be no bowel obstruction seen. Lots of gas in my colon but no obsruction. It was/is very scary. I too considered myself to have a stomach of steel! At the time of these episodes I was trying to eat very healthy. I was eating about 3-4 servings EACH of vegetables and fruit. I was eating 3 different types of nuts brazilian, almonds and walnuts daily (small servings each) and I was consuming flax seed daily. I think all this was too much for my bowels. Everytime I'd have an episode I would consume clear liquids and slowly advance to solids. Eventually I start adding the fruits, veggies, etc. The I'd be back with this stomach pain again. I would not believe this 'healty' diet was the cause. Well I cut out the nuts totally. I eat vegetables once daily. I make sure I drink 64oz of water a day and I eat prunes daily. Since then I have not had any bowel pain. My surgeon was convinced it was a growing spot of cancer pulling at my intestines. I am still not convinced it was the cancer causing my bowel symptoms. Like I said, I hadn't had an episode since October and I didn't start chemo until Jan.

Whenever I wonder how/why I had a recurrence when other women have not. I tell myself that I am being treated at a leading cancer center. I just have very aggressive cancer. I was never sick prior to being diagnosed. I always considered myself to have a great immune system. I was convinced I would be one of those women who would go a long time. It is all so disappointing.

Me, too, Nancy............
The women in my family live forever - into their late 80's and often their 90's. Many of the men fared almost as well. And I will be the first not to go to my grave with all my girly bits intact.

Most of them died at home, in their own beds. My 88 year-old great aunt locked herself out of her house, so she climbed in the window! A life-threatening diagnosis when I was barely 60 really sank my emotional ship. But once you've "got it", the truth is, the vast majority of us will suffer a recurrence within a year. And many of us will have multiple recurrences. So even while I celebrate my current status (NED), I do so with one eye on the clock (or calendar, as it were). I will not be at all suprised if I have a recurrence. Delighted, of course, but not surprised.

I think my recent bowel pain might have been caused by a sudden urge to "eat better", which included a whole bag of raw baby carrots in a single day. The pain was bad enough that I got up in the middle of the night and rooted around in my medicine cabinet for one of the pain pills left over from my post-op period.

I prefer my veggies raw (except for the ones I probably shouldn't be eating anyway, like potatoes and corn), but from now on I will try eating more salads. I adore raw fruit and can't wait for some of my faves to come in season. Texas is famous for Parker County peaches and Pecos cantaloupes. I tell you, there is nothing on God's green earth that tastes better.



Carlene

Hi,
I'm up this morning
Hi,

I'm up this morning preparing for a much anticipated visit with my oncologist, 4th weekly taxol maintenance and lab work.

The taxol so far is working great! My numbers at the onset of the taxol have gone from 62 to 36 in just three weeks. My quality of life hasn't been diminished at all, so I'm hoping my doctor will continue the treatments for as long as she thinks we need to.

Nancy and Carlene, cancer is a bummer and these scans ...well I'll put it this way, my doctor does cat-scans regularly enough but I've never ever had a pet ordered. My doctor has never insisted on a pet-scan.

So basically you ladies are saying that the pet-scan reveals cancer activity even more-so than the cat-scan? Ooooh that sounds scary. So it sounds like the cat-scan does not pick up as well as the pet. Is is a very expensive procedure more so than the cat?

Oh well stay strong and have a wonderful day.

Sharon

catcan said:

Glad
Sharon

Glad the Taxol is working for you. I did get the news my markers went down 227 pts so hopefully that is good. I have to agree with you cancer is a bummer but as long as the quality of life is there i will deal. I haven't ahd a pet scan either. I know some have those some have the cat scans???

Hugs to all

Cat

Cancer is a bummer
I have been reading your posts and agree whole heartedly CANCER IS A BUMMER. It is not fair I get so scared every time I go to get my results (I'm sure the fear gnawing away in my stomach can't be good for my cancer cells!!!!) as I sit in the waiting room getting more and more anxious. Its not right - to be suffering from cancer and then to put yourself through added stress of waiting to see if it is GROWING or SHRINKING. There must be a way of coping with this fear/anxiety. If any one has found a way of doing it please share:)

Please can someone tell me what PET scan is & how it is different from a CT scan?