My mother have 3 month to live (doctors said)
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Hi Select,
Welcome to our community. I am sorry to hear your mother is having a rough time with her treatments.
We are not doctors here; our community is patients, caregivers, and their family and friends. Reading through the information you provided, my understanding is your beloved mother had liver resection surgery, but the cancer is progressing despite two different past chemotherapy treatments, and now treatment with Taxol (Paclitaxel). You mentioned she has had genomic testing that identified several genetic defects related to her cancer.
Understanding this, you may wish to consider the following questions to raise with her doctors:
First, do they recommend trying yet another chemotherapy option if the current one is not effective, taking into consideration your mother’s health status? My layperson’s understanding is there is no predetermined chemotherapy regimen identified for a third or fourth try – the recommendation would be based on your mother’s doctors’ clinical appreciation of her case.
Targeting genomic defects is a really new area of cancer treatment. In the U.S., most of the treatments related to specific genetic defects are not yet approved but are being tested and are accessible through clinical trials. There are not yet treatments for all of the genomic defects that might turn up with cholangiocarcinoma. The website “clinicaltrials.gov” can be searched using the names of the defects found in testing to see if there are any trials available where you are. If you are not in the United States, there may be a similar website listing trials in your country.
While difficult to consider, you may also wish to ask her doctors about whether emphasizing care that eases her symptoms of discomfort rather than targeting the cancer may be an option in the future. Your mother may have views on this question (and the ones above) that should be taken into account.
I wish your mother and your family the best as you consider her care options. Please stay in touch and send any questions our way.
Regards, Mary
Hello there My name is select and my mom have a cholangiocarcinoma cancer.
found that forum very helpfull – thank you all !
Does anyone have recommendations based on what I wrote below ?
Has anyone experienced the specific disease? And recovering from it?
Please share with me, every second counts..
Many thanks in advance<span style=”text-decoration: underline;”>A little history</span>
My mom is a 60 year old , general health good.
On 2016 she underwent extensive liver amputation due to cholangiocarcinoma and in 2018 during hernia repair surgery recurrence of the disease was diagnosed.
She has been under chemotherapy treatments since 2018 (Cisplatin / Gemzar), last dose.
Increase in markers.
She completed 4 courses of FOLFIRI treatment with an addition of Neulastim.
Increase in markers – and imaging deterioration.
She has been put on weekly Taxol treatment.
<span style=”text-decoration: underline;”>Full summery:</span>
On 4.5.2016 a right portal vein obstruction was performed, PVE with good angiographic results.
On 14/6/2016 she underwent extensive right liver amputation, including the liver tail lobe and the extrahepatic bile ducts and lymphadactomy, initial resection and anastomosis of left portal vein, bile duct anastomosis to small intestine RNY, suspected of liver cholangiocarcinoma.
In pathology results – adenocarcinoma with immunohistochemical features of intrahepatic cholangiocarcinoma, moderate degree of differentiation.
Perineural invasion, no lymphovascular invasion, [tumor] free resection margins, without involvement of lymph nodes.
She first came to Oncology 4.5 months after surgery.
4.1.17 MRI 16mm finding in upper pole of right kidney – in follow-up done at Urology in our institution.
Small subdiaphragmatic collection, slight improvement from the recent US but with a deline compared to the MRI prior to the US with the small bilobular collection in the right abdomen with no change.
Slight- medium dilation of the intrahepatic bile ducts in segment 2 without a change, that is probably caused by postoperative stenosis in the biliary tract, or in the intra- parenchymatous section closeset to the anastomosis or in the anastomosis (that is not optimally recognized). Additional findings without a change.
Physical test
Tested: yes
General state of health Abnormal Findings on right abdominal wall up to 3 cm.
2.4.17 CT No findings suspicious of recurrence. Renal findings unchanged.
7.6.17 Abdominal MRI – Restriction center 8 mm
23.10.17 Right partial nephrectomy in pathology – clear cell type RCC 1.2cm
30.10.2017 Abdominal MRI – known lesion suspected of RCC – in the right kidney, stable.
Findings in the liver as described, no change.
At present she is in pain. Weight loss. New subcutaneous findings on lower right abdomen. Strong pain in lower abdomen – treated with Percocet as needed and cannabis in oil at night. Genetic counselling. Regular treatment with Targin- will try 20 mg twice daily and Abstral 400 as needed. She refuses Neemol.
Tests –
Hemoglobin CEA 24 CA 19-9 593 CA125 42 ALKP 205 9.5
9.3.18 during hernia repair – two subcutaneous lesions were found and findings in the hernia sac.
29.3.18 PET CT Tumor invovlement of the ovaries and fallopian tubes, wide secondary spreading in the abdomen and pelvis and the abdominal wall.
In pathology – two nodules of metastatic adenocarcinoma, the largest nodule measureing 0.8 cm in diameter – were found in the subcutis. Compatible with metastatic cholangiocarcinoma.
11.4.18 She began Cisplatin / Gemzar treatment – last dose 13.8.18 Pancytopenia – receives Neupogen PD.
MSS in foundation – PIK3CA APC PBRM1 ARID1A TMB-low
25.6.18 PET CT The findings of the examination demonstrate a certain response in the secondary spreading in the abdominal cavity and the pelvis with the involvment of the abdominal wall, but the disease is still active.
29.6.18 PET CT The test results demonstrate a certain response to the secondary spreading in the abdominal cavity and the pelvis with the involvement of the right abdominal wall but the disease is still active.
The ovaries and fallopian tubes, as in the past, are large with over absorption in the thick tissue areas and there is suspicion of Krukenberg tumor disease.
The right ovary and fallopian tubes looks hypodense maybe bleeding – in a sonar gynecological test – the right ovary is enlarged 6.5 cm, findings of many cysts without active blood.
28.8.18 CT Peritoneal implants in the abdomen and pelvis and on the abdominal wall are known, no significant change.
Small retrocrural lymph nodes and in the gastrohepatic ligament a few grew to 0.6 cm a short axis compared to 0.4 cm in the gastrohepatic ligament lymph nodes also grew a little along the retroperitoneum. Enlarged hypodense left frontal area, no change about 1 cm, short axis. A known hypodense center on the spleen grew a little 1.7*2.1 cm compared to 1.5*1.8 cm. The spleen is normal in size. Enlarged, its capacity is about 18 cm, its texture is somewhat uneven. Grew slightly, it amassed the pelvic masses, involvingב the two ovaries and fallopian tubes with the areas with thicker tissue and the areas with more cysts. There is a decrease in the proximity of some of the lesions at the front of the spleen, no significant change in dimensions in the hypodense process that was observed during the previous test, although there is a certain decrease in its absorption intensity.
17.9.18 Started second line of FOLFIRI with last Neulastim 31.10.18 PD
3.12.18 PET CT Progress of secondary spreading in abdomen and pelvis.
Tumor implants some across the colon serosa. Involvement in the progress in the right abdominal wall. Tumor involvement of the ovaries and fallopian tubes with increasing dimensions. Over absorption in new hypodense processes in the left liver Over-absorption in new hypodermic processes in the left lobe of the liver are suspected of secondary distribution in the parenchyma itself. A known secondary process in the spleen. Suspected new tumor involvement of the right adrenal gland.
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