Cancer is back
w/mets to liver. After all the procedures the last 2 years, operations, colostomy, 2 rounds of chemo, thought he might be in for a rest. He has been on erbitux for the last
3 months. He started feeling a lot of pain when he sits or walks, also urination problems.
Drs did a protoscopy and found the rectal tumor is back with a vengence. It is about 1 inch from the opening of the rectum and two large to take the rectum out with hopes of
getting all the cancer. Did a pet scan to see if anything else has developed in the area,
and to recheck liver mets. Cant take heavy chemo yet cause platelets haven't built back up. He had a lot of radiation for prostate cancer several years back, so they are wavy
to do a lot of radiation now. Drs are deciding to do only 3 weeks of radiation to help
shrink the rectal tumor to help with the pain only. We are waiting on that decision and
also the results of the scan. Feel like we are in some kind daze, the way the doctors
have talked throughout,I somehow thought the danger would be in the liver. So when the liver mets became stable, I thought we could relax a little. But I keep realizing how
much I don't know about this disease. His tumor markers had gone to 24 in February, then
down to 13 several months later. Now we find the count has gone up to 54. Does any of this make since? Am concerned that if they do the 3 weeks radiation to shrink it to
decrease pain, won't it just grow again. Then what? More radiation for 3 weeks?
Any one out there experienced this? Thank for letting me vent.
Comments
-
Sorry
Hey eibod,
I'm sorry to hear of what your husband and you are having to endure. Unfortunately,I can't help you guys out. I have stage 2 rectal cancer and my treatment is different. Perhaps, someone in a similar situation will chime in soon. You will be in my prayers.
Take care,
Karen0 -
so so sorry
Hi Eibod,
My husband has the exact same cancer except he was just diagnosed in June of this year so we have just begun treatment. He is on FOLFOX for about 3 months and then will go to chemo/radiation and then rectal surgery we are told. They are telling us that the liver surgery is the last thing they will do but we know it is a long long road. His first CT showed 6 liver lessions so they are hoping that the chemo will shrink them. We are also in a complete state of disbelief as I myself also battled cancer for 4 years in 2004. When we met with the radiation oncologist she said that radiation is very effective in shrinking rectal tumors so maybe it will help your husband. Stay strong.
Praying for you both. Hugs and strength, Teri0 -
Hi,
Sorry to hear of your husband's rectal tumor recurrence. I have also experienced a rectal tumor recurrence about a year ago now. Mine is 3 cm up from the anal sphincter & I'm not a candidate for radiation or surgery right now, unfortunately. I am on chemo, but that doesn't seem to help anything to shrink- just to keep the tumors from going out of control. I know about the tumor marker/CEA up and down too- mine for a while would go up and then down every other time it was checked. Lately, it has gone up & is quite high now (mid 300's), but the number is different in everyone.
I did want to share something with you for your husband to hopefully get his platelet count up. I am currently on Gemzar for chemo, which is well known to make the platelet count take a dive. That did happen to me when I first started on it & I had to skip a treatment, then continue on a reduced amount for a while. In February, I read about spirulina and chlorella & how much they help with red blood cell counts (increasing oxygen) and with helping platelets. I thought what did I have to lose. Within a couple of weeks of starting on them, my platelet count went up to close to normal. Then to totally normal. My onc was surprised and then upped my Gemzar dose to what it should be, but was worried that my platelets would drop again and we'd have to reduce the dose again. Never happened- my platelet count has been totally in the normal range every single time my blood has been drawn. The nurses comment on it every time! My onc didn't know much about what I was taking, but then looked into it & told me I should probably keep on them. They don't interfere with chemo at all, so I'd look into your husband taking spirulina and chlorella as soon as possible. Run it by the onc, but mention what I told you about what it did for me & see what he/she thinks. My onc said he doesn't know if that's really what's helping me, but it can't hurt, so I should continue taking them.
Best wishes-
Lisa0 -
the spirulina and chlorella sound greatlisa42 said:Hi,
Sorry to hear of your husband's rectal tumor recurrence. I have also experienced a rectal tumor recurrence about a year ago now. Mine is 3 cm up from the anal sphincter & I'm not a candidate for radiation or surgery right now, unfortunately. I am on chemo, but that doesn't seem to help anything to shrink- just to keep the tumors from going out of control. I know about the tumor marker/CEA up and down too- mine for a while would go up and then down every other time it was checked. Lately, it has gone up & is quite high now (mid 300's), but the number is different in everyone.
I did want to share something with you for your husband to hopefully get his platelet count up. I am currently on Gemzar for chemo, which is well known to make the platelet count take a dive. That did happen to me when I first started on it & I had to skip a treatment, then continue on a reduced amount for a while. In February, I read about spirulina and chlorella & how much they help with red blood cell counts (increasing oxygen) and with helping platelets. I thought what did I have to lose. Within a couple of weeks of starting on them, my platelet count went up to close to normal. Then to totally normal. My onc was surprised and then upped my Gemzar dose to what it should be, but was worried that my platelets would drop again and we'd have to reduce the dose again. Never happened- my platelet count has been totally in the normal range every single time my blood has been drawn. The nurses comment on it every time! My onc didn't know much about what I was taking, but then looked into it & told me I should probably keep on them. They don't interfere with chemo at all, so I'd look into your husband taking spirulina and chlorella as soon as possible. Run it by the onc, but mention what I told you about what it did for me & see what he/she thinks. My onc said he doesn't know if that's really what's helping me, but it can't hurt, so I should continue taking them.
Best wishes-
Lisa
dear lisa,
its not often you get such clear benefits from an alternative, its just great.
thanks for sharing its effectiveness fpr you, would nt it be nice if this benefit was a common trend. so many good be helped.
i hopw your are going ok!
hugs,
pete0 -
so sorry eibod
sounds like you guys had a really tough year , i had a complete response for a large rectal tumour with combo radio/chemo its was a t4. just good luck, it might be time to look at alternatives, reading from the life extension foundation maybe a one place to start.
hugs,
pete0 -
Hi Karen, Appreciate yourkaren40 said:Sorry
Hey eibod,
I'm sorry to hear of what your husband and you are having to endure. Unfortunately,I can't help you guys out. I have stage 2 rectal cancer and my treatment is different. Perhaps, someone in a similar situation will chime in soon. You will be in my prayers.
Take care,
Karen
Hi Karen, Appreciate your reply and prayers. Helps to know. Brenda0 -
My rectal tumor .....pete43lost_at_sea said:so sorry eibod
sounds like you guys had a really tough year , i had a complete response for a large rectal tumour with combo radio/chemo its was a t4. just good luck, it might be time to look at alternatives, reading from the life extension foundation maybe a one place to start.
hugs,
pete
was golfball size when found.........after radiation it was marble size, so the radiation does help in aid in surgery.....and really shrinks the tumor, it also fried most of the 22 nodes they took out to test for clear margins...so the radiation does work rather well.
in good health, buzz0 -
Strange
It sounds like they were keeping their eyes on the donut and not on the hole so to speak. If he was under "supervision" for cancer and was on Erbitux, how did they miss the large rectal tumor? Are you/is he happy with his oncologist? I would be cautious if I was under constant care by someone and this happened by "surprise".
There are ways to shrink it, other's have chimed in with their experiences. I'm sorry your husband has to go through this on top of all he's been though.
-phil0 -
Teri..The kind of rectaltko683 said:so so sorry
Hi Eibod,
My husband has the exact same cancer except he was just diagnosed in June of this year so we have just begun treatment. He is on FOLFOX for about 3 months and then will go to chemo/radiation and then rectal surgery we are told. They are telling us that the liver surgery is the last thing they will do but we know it is a long long road. His first CT showed 6 liver lessions so they are hoping that the chemo will shrink them. We are also in a complete state of disbelief as I myself also battled cancer for 4 years in 2004. When we met with the radiation oncologist she said that radiation is very effective in shrinking rectal tumors so maybe it will help your husband. Stay strong.
Praying for you both. Hugs and strength, Teri
Teri..The kind of rectal operation husband had was a rectal tumor fulgaration. Then this year he had a colostomy. Is that what your husband is having? They did do the liver after the rectal operation. But just an oblation (sp). We are hoping the radiation will help, although he is only getting 15 treatments. She said just enough to help the pain.
We will see what comes next. It is a long road, I really hope the best for you..Brenda0 -
Hi Lisa, felt better afterlisa42 said:Hi,
Sorry to hear of your husband's rectal tumor recurrence. I have also experienced a rectal tumor recurrence about a year ago now. Mine is 3 cm up from the anal sphincter & I'm not a candidate for radiation or surgery right now, unfortunately. I am on chemo, but that doesn't seem to help anything to shrink- just to keep the tumors from going out of control. I know about the tumor marker/CEA up and down too- mine for a while would go up and then down every other time it was checked. Lately, it has gone up & is quite high now (mid 300's), but the number is different in everyone.
I did want to share something with you for your husband to hopefully get his platelet count up. I am currently on Gemzar for chemo, which is well known to make the platelet count take a dive. That did happen to me when I first started on it & I had to skip a treatment, then continue on a reduced amount for a while. In February, I read about spirulina and chlorella & how much they help with red blood cell counts (increasing oxygen) and with helping platelets. I thought what did I have to lose. Within a couple of weeks of starting on them, my platelet count went up to close to normal. Then to totally normal. My onc was surprised and then upped my Gemzar dose to what it should be, but was worried that my platelets would drop again and we'd have to reduce the dose again. Never happened- my platelet count has been totally in the normal range every single time my blood has been drawn. The nurses comment on it every time! My onc didn't know much about what I was taking, but then looked into it & told me I should probably keep on them. They don't interfere with chemo at all, so I'd look into your husband taking spirulina and chlorella as soon as possible. Run it by the onc, but mention what I told you about what it did for me & see what he/she thinks. My onc said he doesn't know if that's really what's helping me, but it can't hurt, so I should continue taking them.
Best wishes-
Lisa
Hi Lisa, felt better after reading this. His cea going up to 54 seems like nothing
compared to 300. Didn't know they went that high!!! I will mention the spirulina and
chlorella to our Dr. Thank you for sharing this info. I always read your post, you seem
like the ever-ready battery, you keep on ticking no matter what. I have great respect
for you. Hope you are doing well, Brenda0 -
Buzz, this is good to hear.Buzzard said:My rectal tumor .....
was golfball size when found.........after radiation it was marble size, so the radiation does help in aid in surgery.....and really shrinks the tumor, it also fried most of the 22 nodes they took out to test for clear margins...so the radiation does work rather well.
in good health, buzz
Buzz, this is good to hear. Apparently the radiation will be a good thing. I don't know
if he has any node involvement, but guess it would clear them up as well?
Take care, Brenda0 -
My tumor was right near thePhillieG said:Strange
It sounds like they were keeping their eyes on the donut and not on the hole so to speak. If he was under "supervision" for cancer and was on Erbitux, how did they miss the large rectal tumor? Are you/is he happy with his oncologist? I would be cautious if I was under constant care by someone and this happened by "surprise".
There are ways to shrink it, other's have chimed in with their experiences. I'm sorry your husband has to go through this on top of all he's been though.
-phil
My tumor was right near the sphinchter muscle also and the radiation did shrink it but the team decided since on/near the muscle the best option would be to remove the whole rectum & end of problems.
Adapted to the ostomy real well and no more toilet runs all day.0 -
Hi Kenny, He already has aKenny H. said:My tumor was right near the
My tumor was right near the sphinchter muscle also and the radiation did shrink it but the team decided since on/near the muscle the best option would be to remove the whole rectum & end of problems.
Adapted to the ostomy real well and no more toilet runs all day.
Hi Kenny, He already has a colostomy, and I agree it has cut out the potty runs.
We were told the tumor was too large to remove the rectum and hope to get it all.
Maybe that option would be there after radiation, if it shrinks? Were also told
that the operation is hell. We go to the dr on Tues to get scans results, will know
then what plans we can make. Take care, Brenda0 -
Thanks Phil, Not sure howPhillieG said:Strange
It sounds like they were keeping their eyes on the donut and not on the hole so to speak. If he was under "supervision" for cancer and was on Erbitux, how did they miss the large rectal tumor? Are you/is he happy with his oncologist? I would be cautious if I was under constant care by someone and this happened by "surprise".
There are ways to shrink it, other's have chimed in with their experiences. I'm sorry your husband has to go through this on top of all he's been though.
-phil
Thanks Phil, Not sure how the Erbitux works. Wonder if it is as good on one area and
maybe not the other??? They had done scans regularly, but due to hip replacement
I think it must be difficult for a clear picture with a ct scan. The scans show the liver
and areas well, but not the rectal area as clear. They did a different scan that hopes
to reflect the area a little clearer. We will know on Tuesday. Take care, Brenda0 -
Dear Brendaeibod said:Hi Kenny, He already has a
Hi Kenny, He already has a colostomy, and I agree it has cut out the potty runs.
We were told the tumor was too large to remove the rectum and hope to get it all.
Maybe that option would be there after radiation, if it shrinks? Were also told
that the operation is hell. We go to the dr on Tues to get scans results, will know
then what plans we can make. Take care, Brenda
I too had a rectal tumor. Surgery to remove the anus, rectum, reproductive organs and do a colostomy all in one operation.
While no operation is a walk in the park, I have to wonder who told you 'the operation is hell'. I did have some initial difficulties and was in the hospital longer than expected, but recovered from all that.
If you have questions about what you have been told of the operation, don't hesitate to ask. There are a number of guys here who will be glad to try to answer from a male perspective.
Hugs,
Marie who loves kitties0 -
STRANGE - RECTAL CANCERPhillieG said:Strange
It sounds like they were keeping their eyes on the donut and not on the hole so to speak. If he was under "supervision" for cancer and was on Erbitux, how did they miss the large rectal tumor? Are you/is he happy with his oncologist? I would be cautious if I was under constant care by someone and this happened by "surprise".
There are ways to shrink it, other's have chimed in with their experiences. I'm sorry your husband has to go through this on top of all he's been though.
-phil
MY SISTER WAS DIAGNOSED WITH STAGE 1 CANCER IN APRIL 2010. THE DOCTORS KEPT AN EYE ON HER UNTIL DECEMBER UNTIL THEY FINALLY DID SOMETHING LOCAL RADIATION AND ORAL CHEMO. NOW SHE HAS STAGE 4 CANCER WITH OTHER THAN A REAL MIRACLE ONLY HAS WEEKS LEFT. i DID CHANGE HER DOCTORS AND RELOCATED HER TO LIVE WITH ME BUT IT DOES HAPPEN0 -
At this point, I amLovekitties said:Dear Brenda
I too had a rectal tumor. Surgery to remove the anus, rectum, reproductive organs and do a colostomy all in one operation.
While no operation is a walk in the park, I have to wonder who told you 'the operation is hell'. I did have some initial difficulties and was in the hospital longer than expected, but recovered from all that.
If you have questions about what you have been told of the operation, don't hesitate to ask. There are a number of guys here who will be glad to try to answer from a male perspective.
Hugs,
Marie who loves kitties
At this point, I am wondering if the operation will be possible, unless the rectal tumor
shrinks through radiation. Dr called us yesterday with results of the pet scan they took last Saturday. There is now cancer in lymph nodes on the right and left of his groin. Also cancer in lymph node at the liver. There are also 3 new cancer sights in the liver, as well as the 3 we knew about. We will not see the oncologist until Tuesday, so are pretty worried about what type of treatment they can do now, since she said he couldn't take chemo right now. Apparently the erbitux quit working a while back??? Will radiation
help with the lymph nodes as well as the rectal tumor? Any opinions would be appreciated.
Thanks, Brenda0
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