@colleenyoung, we are planning a meeting with my mom's oncologist on Monday, Sept. 12 to discuss stopping the treatment. The severe side effects have taken a significant toll on my mom's psyche, and she is not willing to go through them again (who can blame her?). The effects are subsiding and she is starting to get her appetite back, albeit very slowly. Thank you for the link for appointments. I will schedule one soon...
Hi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
Hi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
I'm sorry to hear about the infection and possible bile duct blockage. You can request a consult with a liver specialist at Mayo Clinic, by submitting a request online here: http://mayocl.in/1mtmR63
The appointment coordinator will find out more about your mom's medical status and needs and match you with the specialist and team best for her.
My mother is 80 years old and was diagnosed with gallbladder cancer over 2 years ago (July 2020). The cancer was discovered following an autopsy on her gallbladder, which was removed due to severe pain. There were no other symptoms like jaundice present at the time. She was told that the cancer was caught relatively early, but, upon further imaging and blood tests, it was discovered that the cancer had spread to several lymph nodes and parts of the liver.
My mom went through another round of surgery to remove part of her liver, which had shown cancer-like lesions. Biopsy results on the removed liver tissue revealed NO sign of cancer! Since then, she has gone through several rounds of chemotherapy and radiation. Specifically, her chemotherapy regimen was as follows:
- Gemcitabine and cisplatin
- Gemcitabine + cisplatin + durvalumab (Topaz study)
- Oxaliplatin + 5-FU
Her body has had various reactions to the therapies above. After nearly six months of therapy with the Topaz study meds, her cancer was still growing, as evidenced by cancer antigen (CA 19-9) blood test and liver MRI. The lesions in the liver have not been positively identified as cancer (too small to biopsy). However, their mere existence, coupled with increase in CA 19-9 numbers have convinced her oncologist team that they are likely cancer. Hence the chemo regimen...
Fast forward to just over a week ago, her oncologist determined that the cisplatin + gems + immune regimen has taken its course, and, in order to further force the cancer to "stability" or "remission", it is best to move to the oxygen + 5FU regimen. After one session of this new cocktail, it became very clear that my mom's body was not responding well to this treatment. She lost her appetite, was extremely weak, was not able to sleep well at night, and lost ~6 lbs in close to a week. My mom currently weighs 52 kilos (~115 lbs), so the weight loss is significant.
I have provided this background to see if anyone has had a similar experience and what (if any) other therapies they may have tried that has worked for them.
I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
This is good to hear. My wife had her gallbladder removed because of stones and they found the cancer. CT scans show nothing else so we are leaning towards not doing anything else.
I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
Hi @formayor, first and foremost, I wish you and your wife and family a quick and complete resolution to whatever the issue turns out to be. Yes, we have found CTs to be inconclusive as well. We have found liver MRIs to be more useful in terms of identifying "lesions" that may be in the liver, their size and prominence, and potentially whether they are cancerous or not. Based on my understanding, they can only be determined for cancer if they are large enough to be needle biopsied.
I have initiated the process to have a liver specialist see my mom, per @colleenyoung's advice above (thank you, @colleenyoung!). I will post any findings to this string and hope you find it useful for your wife. In the meanwhile, please let me know if you have further questions about our journey so far, just to compare notes.
Hi @formayor, first and foremost, I wish you and your wife and family a quick and complete resolution to whatever the issue turns out to be. Yes, we have found CTs to be inconclusive as well. We have found liver MRIs to be more useful in terms of identifying "lesions" that may be in the liver, their size and prominence, and potentially whether they are cancerous or not. Based on my understanding, they can only be determined for cancer if they are large enough to be needle biopsied.
I have initiated the process to have a liver specialist see my mom, per @colleenyoung's advice above (thank you, @colleenyoung!). I will post any findings to this string and hope you find it useful for your wife. In the meanwhile, please let me know if you have further questions about our journey so far, just to compare notes.
Hello @hopefull33250, we were able to consult with a GI Oncology specialist at Mayo. He had studied my mom’s health history very thoroughly and confirmed that we are on the right track wrt her cancer treatment plan. That said, the gap in our understanding continues to be “lesions” in my mom’s liver which are too small to biopsy, but numerous enough to be considered worthy of chemotherapy.
Thank you for following up and please let me know if you have recommendations for me to follow up on. 🙏🏼
My big sister (by choice, not biology) had emergency surgery to remove her gallbladder (plus some of her liver)... Diagnosed Stage 3... It's been a couple of months and she still has a drain because she had developed an infection too... She starts chemo the first week of February. for 7 months ( 2 weeks on/ 1 week off). I'm doing what I can, from afar (she is in Florida, I'm in CA) by gathering data to help her / support her as best I can... My first question I have is this -- 7 months of chemo??? Isn't that a very long time for chemo? ... She's been told the chemo is given to slow down the growth/keep it from spreading but there is no cure, remission is not possible. My second question - Are there studies out there for people in stage 3 who decide NOT to do chemo and how long on average someone with stage 3 will live in comparison to someone who does the chemo (how long on average will they live after chemo is completed)?
I recently received a like in a previous post and wanted to give an update to my wife’s (56 years old) current non condition. She had her gallbladder removed end of July last year and cancer found in gallbladder. We recently did another set of CT scans and blood tests (first scans done in September were unremarkable). The scans came back still unremarkable. So far not going forward with additional surgery (open surgery with removal of part of the liver and surrounding lymph nodes) or chemotherapy has been the right decision for us (surgery and/or chemo were what doctors were recommending). I read a research paper that said patients with PT1A cancer (my wife had PT2A) were not better off with additional treatments. I don’t remember all the specifics for PT2A but all except for the 2nd stage were good - away from liver, well differentiated (I think) and relatively small 0.6cm. I recognize that everyone’s situation is different but hope this can help guide you what decisions to make for yourself. Our next CT scans and tests are in 6 months (dr recommend 3 months but wife’s anxiety wanted to extend).
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Alie, how are you and your mom doing? Next steps?
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2 ReactionsHi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
I'm sorry to hear about the infection and possible bile duct blockage. You can request a consult with a liver specialist at Mayo Clinic, by submitting a request online here: http://mayocl.in/1mtmR63
The appointment coordinator will find out more about your mom's medical status and needs and match you with the specialist and team best for her.
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2 ReactionsHello Alie,
I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
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Hug
1 ReactionThis is good to hear. My wife had her gallbladder removed because of stones and they found the cancer. CT scans show nothing else so we are leaning towards not doing anything else.
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Hug
2 ReactionsHi @formayor, first and foremost, I wish you and your wife and family a quick and complete resolution to whatever the issue turns out to be. Yes, we have found CTs to be inconclusive as well. We have found liver MRIs to be more useful in terms of identifying "lesions" that may be in the liver, their size and prominence, and potentially whether they are cancerous or not. Based on my understanding, they can only be determined for cancer if they are large enough to be needle biopsied.
I have initiated the process to have a liver specialist see my mom, per @colleenyoung's advice above (thank you, @colleenyoung!). I will post any findings to this string and hope you find it useful for your wife. In the meanwhile, please let me know if you have further questions about our journey so far, just to compare notes.
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3 ReactionsHello @alie
It has been a whole since you last posted about your mother's health issues. Was you able to consult with a Mayo liver specialist?
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2 ReactionsHello @hopefull33250, we were able to consult with a GI Oncology specialist at Mayo. He had studied my mom’s health history very thoroughly and confirmed that we are on the right track wrt her cancer treatment plan. That said, the gap in our understanding continues to be “lesions” in my mom’s liver which are too small to biopsy, but numerous enough to be considered worthy of chemotherapy.
Thank you for following up and please let me know if you have recommendations for me to follow up on. 🙏🏼
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Like -
Helpful -
Hug
2 ReactionsMy big sister (by choice, not biology) had emergency surgery to remove her gallbladder (plus some of her liver)... Diagnosed Stage 3... It's been a couple of months and she still has a drain because she had developed an infection too... She starts chemo the first week of February. for 7 months ( 2 weeks on/ 1 week off). I'm doing what I can, from afar (she is in Florida, I'm in CA) by gathering data to help her / support her as best I can... My first question I have is this -- 7 months of chemo??? Isn't that a very long time for chemo? ... She's been told the chemo is given to slow down the growth/keep it from spreading but there is no cure, remission is not possible. My second question - Are there studies out there for people in stage 3 who decide NOT to do chemo and how long on average someone with stage 3 will live in comparison to someone who does the chemo (how long on average will they live after chemo is completed)?
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Like -
Helpful -
Hug
1 ReactionI recently received a like in a previous post and wanted to give an update to my wife’s (56 years old) current non condition. She had her gallbladder removed end of July last year and cancer found in gallbladder. We recently did another set of CT scans and blood tests (first scans done in September were unremarkable). The scans came back still unremarkable. So far not going forward with additional surgery (open surgery with removal of part of the liver and surrounding lymph nodes) or chemotherapy has been the right decision for us (surgery and/or chemo were what doctors were recommending). I read a research paper that said patients with PT1A cancer (my wife had PT2A) were not better off with additional treatments. I don’t remember all the specifics for PT2A but all except for the 2nd stage were good - away from liver, well differentiated (I think) and relatively small 0.6cm. I recognize that everyone’s situation is different but hope this can help guide you what decisions to make for yourself. Our next CT scans and tests are in 6 months (dr recommend 3 months but wife’s anxiety wanted to extend).
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Hug
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