Mom age 59 diagnosed•Tumor in tail•help!

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Mom age 59 diagnosed•Tumor in tail•help!

by Millerla on Tue May 26, 2015 12:44 PM

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My name is Laura, I am 33 yrs old and my 'perfectly healthy' mother, Ruthy, age 59, was diagnosed with this horrible cancer on March 20th 2015. We never would have known, but she was having terrible stomach pain and she was puking non-stop. The first trip to the ER resulted in her being told she had a stomach virus. The 2nd trip to the ER resulted in her getting a colonoscopy ordered. During the colonoscopy, the Dr. Found a 'blockage' in her colon/intestines. The blockage was not a tumor..it was a 'thickening/ scar tissue' mass that formed as a result of 3 cesarian section births, one in 1982(when I was born) one in 1983(my sister) and the 3rd, (my brother) in 1986. Years later, she had a 4th abdominal surgery-total hysterectomy. And after that came a hernia surgery where they inserted a mesh screen. So moms had that area of her body cut open and sewed shut 5 times. No wonder there was a scar tissue formation that caused an intestinal blockage. So the colonoscopy resulted in immediate 'emergency surgery' & the Dr. removed this scar tissue mass and we all thought, 'great! She's 'on the mend!' We knew it would be a slow recovery, as this was the 6th time she had that area cut open in her life. But we figured that with the scar tissue blockage gone, her intestinal problems would be over. That was until the surgeon took the 'scar tissue mass' to pathology and they found 'malignant cells' within this scar tissue mass. They brought her in& basically told her to see an oncologist because the surgeon could tell that it was pancreatic cancer cells in the mass, as opposed to early onset colon cancer. That was the day we realized something far bigger was on the horizon. After the scar tissue mass removal, she began experiencing the same exact pain, nausea, puking, as she had before the surgery and we found out that during the intestinal surgery, she somehow contracted a Strep-Bacteria under the incision- and 3 pockets (abscesses) were under the skin, under the fresh incision. Maybe a dirty instrument? Who knows, but the surgery caused another blockage..the abscesses were blocking her intestines and causing a new, 2nd blockage. So they put these suction cup thingies on her belly to suck out the infection along with iv antibiotics. On March 20th, she found out she had pancreatic cancer. It wasn't until the initial intestinal incision and these 3 surgery-caused infection pockets healed that she could begin any sort of cancer treatment. So finally on May 19th, 2015 (3 months after disgnosis) she began outpatient chemo through her port, 3 consecutive days @6 hrs/day of chemo. Now she has a chemo break and then she'll go back and do more chemo..and so on. I want to add that after they removed the scar tissue mass(that contained the malignant pancreatic cancer cells) from her intestines/colon- she had a PT scan (the one where lights show where there is cancer in the body) and the only 'light' that showed on the scan was a little light in the tail of her pancreas. We live in Florida, where Moffitt Cancer Center in Tampa is 2 hrs away. I really wanted her to go there for a second opinion. She has an appt June 2nd. She's currently back in the small local community hospital due to recent dehydration that came about following her 3 consecutive days of chemo treatment. I want to know why mom can't get the whipple, why can't she have the little tumor in the tail of her pancreas cut out?? Why did these oncologists opt for chemo first? Why not chop the tail of her pancreas off? Then, since the PT scan showed cancer only in the tail of her pancreas, if the whipple was performed, she would essentially be cancer- free..why break her immune system down with chemo? It's like: every minute that her pancreas tail has this tumor in it, there's a chance that it could spread to her liver etc. With the cancer contained in the pancreas tail only TODAY, why wait?? I'm so frustrated!!!!! Any input??? PS- She's very nauseas, since disgnosis. Puking buckets of green bile, like her body is producing an over abundant never ending amount of bile. Nothing helps the puking. They've given her every anti-nausea known to man-kind. Her favorite is phenergen. It makes her sleep, but she doesn't puke when sleeping, so maybe that's why she likes it.

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Hussy on Tue May 26, 2015 01:57 PM

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A second opinion is always a good idea.

Based on what you have written, the cancer is not confined to the pancreas.  The intestinal blockage contained pancreatic cancer cells.  Once the cancer has spread -- or metastasized -- the Whipple is no longer a curative option.  In some cases it will be performed for palliative reasons. 

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Millerla on Tue May 26, 2015 02:36 PM

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Thank you for your reply. I understand that her cancer is not confined, as they did find malignant pancreatic cancer cells in her intestinal blockage. However, they removed the intestinal blockage...and after the removal of the scar tissue mass/blockage, the PT scan showed only one light: in the tail of her pancreas. So I thought it was like this: pancreatic cancer that metastasized to her colon in the intestinal blockage. Then after they removed the intestinal blockage, I thought it reversed her back to isolated pancreatic cancer... No longer considering her metastisized... ???

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Millerla on Tue May 26, 2015 02:40 PM

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What does "Palliative" mean?

RE: Mom age 59 diagnosed•Tumor in tail•help!

by PunkyD on Tue May 26, 2015 05:26 PM

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Dear Laura,

I'm so sorry to hear about your Mom's diagnosis.  You have come to the right place for information and support.  Keep searching for answers to your questions.  

The link below explains in a nutshell regarding the whipple and who is a candidate.  

http://www.cancerresearchuk.org/about-cancer/type/pancreatic

Palliative means that the care keeps the patient out of pain and comfortable but does not treat/cure the main disease. 

Sending you and your family prayers and strength.

Punky

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Hussy on Tue May 26, 2015 07:45 PM

Quote | Reply

Palliative care is also sometimes referred to as supportive care.  It treats the symptoms of the disease and the side effects from treatment.  Sometimes people get palliative care confused with hospice.  Your mother can -- and should -- receive palliative care in conjunction with her treatment. Smaller hospitals may not offer palliative care but a large hospital such as Moffitt will. 

Moffitt is a good choice for a second opinion. Ideally you want your mother to be treated at a National Cancer Institute-designated Comprehensive Cancer Treatment Center. Moffitt is the only such center in Florida. If surgery becomes an option for your mother, you want her to have surgery at a center that does a high volume of surgeries. These centers will have lower incidences of mortality and complications. 

P.S. Just to be clear I shouldn’t have referred to the Whipple. If the tumor is situated on the tail of the pancreas, the surgery that is performed is called a distal pancreatectomy.

Best of luck and keep us posted as you can. 

RE: Mom age 59 diagnosed•Tumor in tail•help!

by smyrnalover on Tue May 26, 2015 09:47 PM

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Once the cancer has metastasized, that's an indication that it's metastatic. Even if you rove one site of metastasis, there are metastatic cells out there that can land elsewhere. That's y they often remove and examine lymph nodes, because that's where the metastatic cells accumulate before they move elsewhere.

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Millerla on Fri Jun 12, 2015 01:02 PM

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On May 26, 2015 12:44 PM Millerla wrote:

My name is Laura, I am 33 yrs old and my 'perfectly healthy' mother, Ruthy, age 59, was diagnosed with this horrible cancer on March 20th 2015. We never would have known, but she was having terrible stomach pain and she was puking non-stop. The first trip to the ER resulted in her being told she had a stomach virus. The 2nd trip to the ER resulted in her getting a colonoscopy ordered. During the colonoscopy, the Dr. Found a 'blockage' in her colon/intestines. The blockage was not a tumor..it was a 'thickening/ scar tissue' mass that formed as a result of 3 cesarian section births, one in 1982(when I was born) one in 1983(my sister) and the 3rd, (my brother) in 1986. Years later, she had a 4th abdominal surgery-total hysterectomy. And after that came a hernia surgery where they inserted a mesh screen. So moms had that area of her body cut open and sewed shut 5 times. No wonder there was a scar tissue formation that caused an intestinal blockage. So the colonoscopy resulted in immediate 'emergency surgery' & the Dr. removed this scar tissue mass and we all thought, 'great! She's 'on the mend!' We knew it would be a slow recovery, as this was the 6th time she had that area cut open in her life. But we figured that with the scar tissue blockage gone, her intestinal problems would be over. That was until the surgeon took the 'scar tissue mass' to pathology and they found 'malignant cells' within this scar tissue mass. They brought her in& basically told her to see an oncologist because the surgeon could tell that it was pancreatic cancer cells in the mass, as opposed to early onset colon cancer. That was the day we realized something far bigger was on the horizon. After the scar tissue mass removal, she began experiencing the same exact pain, nausea, puking, as she had before the surgery and we found out that during the intestinal surgery, she somehow contracted a Strep-Bacteria under the incision- and 3 pockets (abscesses) were under the skin, under the fresh incision. Maybe a dirty instrument? Who knows, but the surgery caused another blockage..the abscesses were blocking her intestines and causing a new, 2nd blockage. So they put these suction cup thingies on her belly to suck out the infection along with iv antibiotics. On March 20th, she found out she had pancreatic cancer. It wasn't until the initial intestinal incision and these 3 surgery-caused infection pockets healed that she could begin any sort of cancer treatment. So finally on May 19th, 2015 (3 months after disgnosis) she began outpatient chemo through her port, 3 consecutive days @6 hrs/day of chemo. Now she has a chemo break and then she'll go back and do more chemo..and so on. I want to add that after they removed the scar tissue mass(that contained the malignant pancreatic cancer cells) from her intestines/colon- she had a PT scan (the one where lights show where there is cancer in the body) and the only 'light' that showed on the scan was a little light in the tail of her pancreas. We live in Florida, where Moffitt Cancer Center in Tampa is 2 hrs away. I really wanted her to go there for a second opinion. She has an appt June 2nd. She's currently back in the small local community hospital due to recent dehydration that came about following her 3 consecutive days of chemo treatment. I want to know why mom can't get the whipple, why can't she have the little tumor in the tail of her pancreas cut out?? Why did these oncologists opt for chemo first? Why not chop the tail of her pancreas off? Then, since the PT scan showed cancer only in the tail of her pancreas, if the whipple was performed, she would essentially be cancer- free..why break her immune system down with chemo? It's like: every minute that her pancreas tail has this tumor in it, there's a chance that it could spread to her liver etc. With the cancer contained in the pancreas tail only TODAY, why wait?? I'm so frustrated!!!!! Any input??? PS- She's very nauseas, since disgnosis. Puking buckets of green bile, like her body is producing an over abundant never ending amount of bile. Nothing helps the puking. They've given her every anti-nausea known to man-kind. Her favorite is phenergen. It makes her sleep, but she doesn't puke when sleeping, so maybe that's why she likes it.
Hello All, This is Laura Miller reporting back as to my 59 year old mothers status re: her stage 4 pancreatic cancer diagnosis in April, 2015. The puking up of the bile never stopped, she was given every anti nausea known to man-kind and it was just not going to stop her body from constantly overproducing bile. She stopped eating not long After diagnosis and was put on Tpn liquid nutrients along with an NG tube. End of May, when her body and immune system were low, the Dr. Suggested an aggressive chemo plan. End of May, she went to chemo via port for 3 consecutive days at 6 hrs of chemo per day. It was a total of 18 hrs of chemo in 3 days, with the hope that the chemo would shrink the tumor in her pancreas and slow the spreading of these cancer seeds that were all over her stomach and liver. After the 3rd day, she was dehydrydrated (should someone on Tpn get dehydrated?) she was at my fathers home during the 3 day chemo. He took her to chemo all 3 days. A home nurse was supposed to come to my dads home and administer the Tpn, however, since my father (her ex husband of 25 years) was an LPN, years ago, they were allowing him to administer the Tpn and be her 'nurse.' When I got to his house after chemo day #1, she was lying there in misery from the chemo with no Tpn attached. My father said it was in the fridge. Should Tpn be active at all times? 24/7 Like it was when she was hospitalized? So she goes back to the hospital for dehydration where they found that her white blood cell count was ZERO. Chemo had destroyed every drop of her immune system. They gave her platelets and blood, hooked up the NG tube, .. Hauled her into ICU. Fever of 105. Around 6/1, her heart Bpm went into the 300's. They realized that before the NG tube was placed, she had aspirated, threw up bile that she then swallowed,it went down the wrong pipe, causing the bile vomit to end up in her lungs, which is why her heart Bpm went sky high because she essentially had 2 collapsed lungs, filled with bile. Causing her to not be able to breath in enough oxygen to her blood. They put her on a ventilator, with the intent to ween her off the ventilator in about 3 days, after they got the bile from her lungs. They did the procedure and on Wednesday, 6/3, they ex/tubated her. We all had to leave the room not knowing if she would breathe on her own, and if she did, would her vitals be ok? After about only 10 minutes, they called us in and there she was. Breathing. On her own. But they had removed everything. The ventilator was of course, gone, thank God...but the Tpn nutrients was gone, all the tubes, she was Laying there with nothing but the NG tube and the iv to administer morphine. The vitals screen was shut off. They told us she had MRSA in her lungs. And that they were just going to let her body shut down. The nurse told me she might breathe on her own from anywhere from 5 min to 1 hour tops. They insisted as if this was proven fact. The minutes ticked on. The hour turned to 2. Finally I said, I want to know her vitals. Her blood oxygen level while tubated was 70. 2 hours after extubation it was 89. Blood pressure fine. Bpm 100. They finally moved her out of ICU And into a regular room where they gave her the max dose allowed of morohine per hour. Again, nothing hooked to her, but the iv and NG tube. No hydration or nutrients. She lived through the night. (They extubation her at 10:30am on 6/3.) She passed away at 9:30am on 6/4 2015. 23 hours after extubation. What do you all think of this????

RE: Mom age 59 diagnosed•Tumor in tail•help!

by Millerla on Fri Jun 12, 2015 01:02 PM

Quote | Reply

On May 26, 2015 12:44 PM Millerla wrote:

My name is Laura, I am 33 yrs old and my 'perfectly healthy' mother, Ruthy, age 59, was diagnosed with this horrible cancer on March 20th 2015. We never would have known, but she was having terrible stomach pain and she was puking non-stop. The first trip to the ER resulted in her being told she had a stomach virus. The 2nd trip to the ER resulted in her getting a colonoscopy ordered. During the colonoscopy, the Dr. Found a 'blockage' in her colon/intestines. The blockage was not a tumor..it was a 'thickening/ scar tissue' mass that formed as a result of 3 cesarian section births, one in 1982(when I was born) one in 1983(my sister) and the 3rd, (my brother) in 1986. Years later, she had a 4th abdominal surgery-total hysterectomy. And after that came a hernia surgery where they inserted a mesh screen. So moms had that area of her body cut open and sewed shut 5 times. No wonder there was a scar tissue formation that caused an intestinal blockage. So the colonoscopy resulted in immediate 'emergency surgery' & the Dr. removed this scar tissue mass and we all thought, 'great! She's 'on the mend!' We knew it would be a slow recovery, as this was the 6th time she had that area cut open in her life. But we figured that with the scar tissue blockage gone, her intestinal problems would be over. That was until the surgeon took the 'scar tissue mass' to pathology and they found 'malignant cells' within this scar tissue mass. They brought her in& basically told her to see an oncologist because the surgeon could tell that it was pancreatic cancer cells in the mass, as opposed to early onset colon cancer. That was the day we realized something far bigger was on the horizon. After the scar tissue mass removal, she began experiencing the same exact pain, nausea, puking, as she had before the surgery and we found out that during the intestinal surgery, she somehow contracted a Strep-Bacteria under the incision- and 3 pockets (abscesses) were under the skin, under the fresh incision. Maybe a dirty instrument? Who knows, but the surgery caused another blockage..the abscesses were blocking her intestines and causing a new, 2nd blockage. So they put these suction cup thingies on her belly to suck out the infection along with iv antibiotics. On March 20th, she found out she had pancreatic cancer. It wasn't until the initial intestinal incision and these 3 surgery-caused infection pockets healed that she could begin any sort of cancer treatment. So finally on May 19th, 2015 (3 months after disgnosis) she began outpatient chemo through her port, 3 consecutive days @6 hrs/day of chemo. Now she has a chemo break and then she'll go back and do more chemo..and so on. I want to add that after they removed the scar tissue mass(that contained the malignant pancreatic cancer cells) from her intestines/colon- she had a PT scan (the one where lights show where there is cancer in the body) and the only 'light' that showed on the scan was a little light in the tail of her pancreas. We live in Florida, where Moffitt Cancer Center in Tampa is 2 hrs away. I really wanted her to go there for a second opinion. She has an appt June 2nd. She's currently back in the small local community hospital due to recent dehydration that came about following her 3 consecutive days of chemo treatment. I want to know why mom can't get the whipple, why can't she have the little tumor in the tail of her pancreas cut out?? Why did these oncologists opt for chemo first? Why not chop the tail of her pancreas off? Then, since the PT scan showed cancer only in the tail of her pancreas, if the whipple was performed, she would essentially be cancer- free..why break her immune system down with chemo? It's like: every minute that her pancreas tail has this tumor in it, there's a chance that it could spread to her liver etc. With the cancer contained in the pancreas tail only TODAY, why wait?? I'm so frustrated!!!!! Any input??? PS- She's very nauseas, since disgnosis. Puking buckets of green bile, like her body is producing an over abundant never ending amount of bile. Nothing helps the puking. They've given her every anti-nausea known to man-kind. Her favorite is phenergen. It makes her sleep, but she doesn't puke when sleeping, so maybe that's why she likes it.
Hello All, This is Laura Miller reporting back as to my 59 year old mothers status re: her stage 4 pancreatic cancer diagnosis in April, 2015. The puking up of the bile never stopped, she was given every anti nausea known to man-kind and it was just not going to stop her body from constantly overproducing bile. She stopped eating not long After diagnosis and was put on Tpn liquid nutrients along with an NG tube. End of May, when her body and immune system were low, the Dr. Suggested an aggressive chemo plan. End of May, she went to chemo via port for 3 consecutive days at 6 hrs of chemo per day. It was a total of 18 hrs of chemo in 3 days, with the hope that the chemo would shrink the tumor in her pancreas and slow the spreading of these cancer seeds that were all over her stomach and liver. After the 3rd day, she was dehydrydrated (should someone on Tpn get dehydrated?) she was at my fathers home during the 3 day chemo. He took her to chemo all 3 days. A home nurse was supposed to come to my dads home and administer the Tpn, however, since my father (her ex husband of 25 years) was an LPN, years ago, they were allowing him to administer the Tpn and be her 'nurse.' When I got to his house after chemo day #1, she was lying there in misery from the chemo with no Tpn attached. My father said it was in the fridge. Should Tpn be active at all times? 24/7 Like it was when she was hospitalized? So she goes back to the hospital for dehydration where they found that her white blood cell count was ZERO. Chemo had destroyed every drop of her immune system. They gave her platelets and blood, hooked up the NG tube, .. Hauled her into ICU. Fever of 105. Around 6/1, her heart Bpm went into the 300's. They realized that before the NG tube was placed, she had aspirated, threw up bile that she then swallowed,it went down the wrong pipe, causing the bile vomit to end up in her lungs, which is why her heart Bpm went sky high because she essentially had 2 collapsed lungs, filled with bile. Causing her to not be able to breath in enough oxygen to her blood. They put her on a ventilator, with the intent to ween her off the ventilator in about 3 days, after they got the bile from her lungs. They did the procedure and on Wednesday, 6/3, they ex/tubated her. We all had to leave the room not knowing if she would breathe on her own, and if she did, would her vitals be ok? After about only 10 minutes, they called us in and there she was. Breathing. On her own. But they had removed everything. The ventilator was of course, gone, thank God...but the Tpn nutrients was gone, all the tubes, she was Laying there with nothing but the NG tube and the iv to administer morphine. The vitals screen was shut off. They told us she had MRSA in her lungs. And that they were just going to let her body shut down. The nurse told me she might breathe on her own from anywhere from 5 min to 1 hour tops. They insisted as if this was proven fact. The minutes ticked on. The hour turned to 2. Finally I said, I want to know her vitals. Her blood oxygen level while tubated was 70. 2 hours after extubation it was 89. Blood pressure fine. Bpm 100. They finally moved her out of ICU And into a regular room where they gave her the max dose allowed of morohine per hour. Again, nothing hooked to her, but the iv and NG tube. No hydration or nutrients. She lived through the night. (They extubation her at 10:30am on 6/3.) She passed away at 9:30am on 6/4 2015. 23 hours after extubation. What do you all think of this????

RE: Mom age 59 diagnosed•Tumor in tail•help!

by bambi99d on Fri Jun 12, 2015 08:11 PM

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Laura,

My heart breaks for you. You’ve been through so much trauma in a very short amount of time. I’m your age and my Mom was 56 when diagnosed and 57 when she passed. She had Stage III locally advanced P.C in the head of the pancreas without an distant spread.

I’m not a medical professional but it sounds like the cancer was effecting all of your mothers systems. From the mountains of research I’ve done this is common with P.C. P.C patients often do not pass from the cancer but all the complications the cancer causes.

Your Mom seems to have had a lot of chemo in short amount of time. 3 days in a row is a lot. On the last round of chemo my Mom had it was two days in a row – that was the beginning of the end for her. She ended up in the hospital as well and never recovered; only got more sick and weaker. At her last PET scan one tiny spot lit up. Basically her cancer wasn’t that bad, one of the doctors were saw even said that. It was the side effects of the chemo and the of the pancreas not working properly that were killing her including severe cachexia.

 My Mom passed away three years ago and I still can’t wrap my brain around what happened towards the end. It still replays in my head on a regular basis.

Prayers to you and your family in this difficult time. 

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