1

(7 replies, posted in General Discussion)

HIi Racheal,
My dear mom had met to her right ovary discovered by increased uptake by PET-Ct and confirmed by CT scan.

Hi all,
My GOD took his biggest gift for me today my beloved mom, she left us after severe suffering from an awful tumor, during the last 2 months she was recurrently admitted to hospital the last one was the worest, My family and me   believed that the tumor aim was to destroy her but actually at the end it actually destroyed itself we are sure now for the first time since she was diagnosed that the tumor is dead and that GOD as we all hope will send mom to heaven, i wish to meet her there soon.
Really it was and it is a terrible time.

I just want to thank all of you with special gratefulness to Percy for your help an support.

Wish all of you and your beloved ones a good health.

Hi,
Mom is using a drug named Em-Ex (Granisetron Hydrochloride) which worked for her in previous cycles, i hope it will have the same effect now with her persistent nausea and vomiting, she is not doing well as i told you about her CT results but her labs are going worse her bilirubin increased (total 2.5, direct 1.5) her abdominal distention increased (now she has moderate ascites), she has severe back pain (related to her right side) also she lost her appetite.

She started chemo yesterday (GEMOX) with modified dose of Gemzar, i asked her oncologist to add Tarceva but he thinks it is not a good idea (due to its results in trials) so finally we decided to postpone it till following her bilirubin level with chemo.

Something more her hepatologist asked for MRCP to detect is it obstructive jaundice or not? and if she will be a candidate for stenting?

http://www.fda.gov/Safety/MedWatch/Safe … 310219.htm

5

(3 replies, posted in General Discussion)

Hi Percy,
Really, i'm so grateful for your reply and care,thank you very much.

Today i went to chest doctor, when he saw CT (done with PET) he told me that basal patches are neither pneumonia nor TB but it is radiation pneumonitis and he said YES it causes fever and dry cough he prescribed corticosteroids (ofcourse under umbrella of antibiotic) i'm really surprised her lung uptake was 16% and the interventional radiologist told me that is ok and we can proceed!!! i'm afraid that it could deteriorate.

6

(3 replies, posted in General Discussion)

Hi,
My mom had PET-CT last tuesday because of rising tumor markers (not for radioemb.evaluation) her radiologist is convinced that the best way for evaluation is triphasic CT liver which she will undergo next week.

PET-CT is really confusing, it showed pulmonary deposits with low grade uptake but her oncologist and her radiologist that there are no deposits, showed adnexal uptake (SUV 5) but also they said no uptake. the worest thing that it showed active focus in left thyroid lobe ( mom had multinodular goiter since 10 years) (SUV 6.8) her oncologist is suspecting cancer her ultrasound showed metabolically active multinodular goiter and her radiologist is not encouraging idea of malignancy, her thyroid functions are within normal range, her oncologist told me no need for FNAC as even if it is cancer it has ver good prognosis (as he said 100% survival without treatment) i don't like that way in thinking i felt as he told me that your mom will never live for 10 years, also i can't imagine that mom has another cancer and i'm supposed to neglect it, i'm really so scared and depressed.

7

(1 replies, posted in General Discussion)

Hi,
If you remember my mom had Y90 radioemb. to her right lobe 3months ago and to left lobe 6 weeks ago, after second injection ultrasound abdomen revealed cholangitis (resolved now) and mild ascites ( which increased 3 weeks later but still considered mild, her CA19.9 was about 596 after rt lobe injection then increased to 1000 4 weeks after left lobe injection also increased to 2000 6 weeks after left lobe injection, her oncologist isn't worried about tumor markers (he thought it is tumor necrosis) but the interventional radiologist said that fever and increased markers only last for 4 weeks after injection!!!! and no explanation for ascites they asked me for PET-CT for fear of extrahepatic active focus (mom has bone secondaries and she had radiation on them and she is in XGEVA injections "denosumab"). please share me your experience about all of that i'm so worried.
Thanks.

8

(0 replies, posted in General Discussion)

Hi,
Could anyone here who had Y90 radioembolization help be about his/her experience?? I'm really confused.
Mom had her 2nd radioembolization on 14/4/2012 she had fever (sometimes exceeded 38 celsius) and accidentally discovered pnumonia and had antiobiotic combination for 10 days with improvement, three days later fever recurred and i asked her to have abdominal ultrasound which showed luid around her gall bladder with pelvic and abdominal ascites, and picture of cholangitis with enlarge lymph nodes ( which her hepatologist and oncologist considered them to be reactive to inflammation not malignant lymph nodes), three days later follow up ultrasound showed regression in fluid and lymph nodes, she is on her 8th day of antibiotic but at day time she is afebrile and temperature starts to rise at about 4 o'clock (pm) its maximum limit is 37.6 celsius, her interventional radiologist told me that the only explanation is tumor lysis but usually it doesn't take more than one month ofter embolization and also it is usually constant allover the day.

My question is: Did anyone here have fever for one month after radioembolization??

Thanks.

9

(1 replies, posted in General Discussion)

Hi,
My mom had her second radioembolization session on 14th April (Lt.lobe), even before embolization she wasn't that good!!! she had bullous eruption on her back (?? drug eruption) followed by unexplained fever (which reached 38.7 celsius), on day of embolization due to right loin pain her radiologist asked for abdominal CT which accidentally revealed bilateral basal lung consolidation ( if some of you remember she was suffering from dry cough and she had CT chest 2 weeks prior to that CT) so chest infection was excluded from differential diagnosis!! anyway a pulmonologist diagnosed her as atypical pneumonia and she received antibiotic combination for 10 days with corticosteroids and fever disappeared, Now she has low grade fever 37.5 and reach 37.9 degrees at night, I'm really confused is it from radiation or resistant chest infection, she has no cough nor sputum and her radiologist told me that postembolization fever is usually constant and doesn't fluctuate!!! I'm really depressed and i don't know what to do?? Could any body here with experience in Y90 radioembolization help??
Thanks.

10

(5 replies, posted in General Discussion)

Thax alot Percy

11

(5 replies, posted in General Discussion)

Hi Percy,
Why are you on it? as i got from internet it is for hepatitis B and it is different fro acyclovir.

12

(5 replies, posted in General Discussion)

Hi,
My mom is suffering from weird skin rash on her middle back, yesterday it was like reddish area today multiple blisters appeared, unfortunately here in Egypt there are no clinics o thursday nor Friday. So i posted some images of that lesions to an dermatologist who said it is difficult to differentiate if it is contact dermatitis or herpes zoster!! he adviced to start acyclovir (oral) but a hepatologist told me it is hepatotoxic!! i don't know what to do?? her radioembolization was planed to be next wednesday but because of viral infection suspicious it will be postponed. also i'm wondering could it be an allergic reaction to chemotherapy or cetuximab which was stopped since 3 weeks???
has anyone here passed similar situation??

13

(4 replies, posted in General Discussion)

Hi Marion,
No it is a dry cough but really i'm so worried as it couldn't be explained.

14

(4 replies, posted in General Discussion)

Hi,
My mom is still suffering from persistent dry cough since about 3 weeks, she had CT chest which showed nothing. I'm really relived when i knew that htere is no lung metastasis but i'm worried about its cause, it doesn't look like cough of infection when i asked her oncologist he said it may be allergy or due to xeloda!!! do you have any ideas, suggestions??

Hi,
My mom had Y90 radioembolization for her right lobe on 22nd February, her CA19.9 after 4 weeks is increased (actually it has been increasing since the beginning of treatment her baseline was 183 then 540 after 3 cycles of GEMOX and still rising even after radioemb.) but what is really weird her AFP which is declining after chemo and radioemb., when i asked her oncologist he told me that CA19.9 is affected by many conditions (e.g. cholangitis which me be caused by radiation may raise it) her radiologist told me that he thinks that she has cholangio-hepatoma due to high AFP.

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(1 replies, posted in General Discussion)

Hi,
My mom is complaining from dry irritating cough which started 10 days ago, i was afraid that its cause is due to Y90 radioembolization she had 0n 22nd feb but her radiologist told me that incidence of radiation pneumonitis is very low specially that they her lung uptake was 16%.

When i read xeloda complications i found that Cough is one of them, please could anyone here share me his/her experience regarding that issue.

Thanks.

17

(15 replies, posted in General Discussion)

Hi,
No you should restrict salt to avoid water retention and also restrict proteins (specially red meat) to avoid increase of ammonia in her blood (which causes hallucination "encephalopathy") and give her fish meat instead till consulting her treating physician.

If you need to ask about anything you are welcomed.

18

(15 replies, posted in General Discussion)

Hi Jose,
As i remember you had a post asking about ascites, did you check your sister's liver function?? if not you should do that. really i don't want to scare you but "odd"" ideas and being talkative may reflect disturbed liver function and may be grade of hepatic encephalopathy, please don't explain every symptom to be a side effect of chemotherapy.

Another thing take care while using anxiolytics and SEDATIVES (Diazepam compounds), they are metabolised by liver so in liver illness they may be harmful.

Sorry if i made you worried but i should warn you, wish her and my mom spedd and soon recovery.

Please keep us updated.

Hi Ed,
Wish you good luck in your radioembolization, if you please i want to ask you some questions if you don't mind.

as i read you are on a clinical trial (GEMOX+Panitumumab), what do you mean by 18 cycles do you mean weeks?? my mother was on GEMOX (3cycles), cetuximab 12 weeks , Xelox(xeloda+oxaliplatin) two cycles and i think that we will have to stop oxaliplatin due to neuropathy too.
So what did your radiologist tell you about the duration you should be off gemzar? i'm really confused as my mom now is on xeloda (she hed her 1st embolization on 22nd february and planned for the next one on 10th April) her radiologist told me that it will be enough to stop xeloda (capecitabine) 10 days before embolisation!! and if you stopped oxaliplatin what are their suggestion about alternatives?

BTW also my mom has large mass in her right lobe and multiple (countless in the other).

Thanks alot and keep in touch.

20

(4 replies, posted in General Discussion)

Hi Percy,
you and everybody here are welcomed, wish i could help.

I post a reply under the topic of "radioembolisation my last option" to answer your questions about my mom experience in radioembolisation. Fatigue is increasing she is sleeping most of the time but with body aches which really is bothering her we will have lab investigations next week (her radiologist asked for lab every 2 weeks).

BTW i want to ask you about xeloda when you do your lab while being on it? my mom received oxaliplatin 10 days ago and started xeloda on the next day her oncologist told me to do lab investigations after finishing 14 days of xeloda.

Something more two days ago she told me that she has a sense of heaviness with numbness in both of her legs (from knee to foot), i think that the neuropathic effect of oxaliplatin began to show up when i called her oncologist he told me that we may have to stop it if stopped what will be the other options?? as i read cisplatin has the same side effect and even worse regarding GIT side effects, carboplatin is not highly recommended and i think it is a weak drug.

21

(4 replies, posted in General Discussion)

Hi Jose,
I'm a cardiologist (heart physician) so i'll try to answer your questions as i can. First of all you should consult her physician because i think there is no correlation between biopsy and ascites so you should make sure it is not an abdominal collection (other than ascites) which may be due to injury during the biopsy.

Answer on Q1 yes she can but it should be well investigated, liver disease alone could cause ascites when liver function is disturbed (because one of causes of ascites is decreased albumin "a protein which is synthesized by liver) paracentesis could be performed under certain circumstances and according to its severity, so she should perform the following laboratory investigations (serum total proteins, Serum albumin, prothrombin activity and INR) then she may be recommended to receive human albumin or plasma according to the results.

I should also tell you that any malignancy could cause fluid collection in abdomen, around the heart or around lungs (which called serous cavities) so i told you to consult her physician who could differentiate.

Answer on Q2 ascites in general is not a good sign but don't worry it could be managed.

I hope i gave you some information which may help you, wish your sister and my mom speed recovery.

Hi,
Yes i think there is contradiction between both of them and i discussed that with her oncologist who was surprised and decided to complete xeloda for this cycle and give her oxaliplatin in the next cycle and no xeloda till 10/4/2012 (time of next radioembolization if she is stable).

My mom finished Erbitux today (12th week) and the doctor said it is enough.

Regarding side effects yes it is fatigue the major problem and FEVER which really scared me two days ago when she had shivering she is still feverish till today. Also she has some abdominal pain. we are still waiting for her next lab investigations to decide the final time of her next embolization.

Hi Percy,
Sorry but i think i didn't get what you meant, do you mean that 10-14 days are enough to stop xeloda before radioembolisation?, i read an article about sirspheres (the type used for my mom) where they said that capecitapine is a contraindication for radioemb. if used less than 2 months before procedure or planned to be used in the future!!

I found during browsing the internet that here is a phase I trial in cases with intrhepatic CC to calculate the dose of Y90 combined with capecitapine and their suggestion was to get use of the sensitizing effect of capecitapine on tumor cells for better response for Y90.

Hi,
My mom had radioembolisation for her right lobe on 22nd february, she has fever since two days and today her temp is 38 celsius with chills i'm really so worried, her doctor said that it is expected.

another thing she is now on xeloda (capecitapine) her treating physician said that we should only stop it 10 days before injection of her left lobe!! but what i got from the web that it should be stopped 2 months before the procedure and shouldn't be used again!! please i need you experience i'm really so worried.

Hi,
Thanks marion for your reply.

Percy your words are really touching, thank you but actually i and my sister are lucky to have a mother like our mom, i wish her to get well soon and i can say that only we are indebted to our GOD who guided me and my family in my mother's illness by support from the surrounding people with special increment to that great foundation which helped me much.

They are suggesting mixed type due to increased vascularity of the tumor (bu her treating oncologist said that it is not a good diagnosis), he suspected neuroendocrine tumor when i reminded him that mom was complaining from the sciatic pain (back pain) since 5 years for several times so he thought for a while and said "long history of bone metastasis+increased vascularity, did they make chromogranin A to her?" he asked, so we performed it and waiting for the result, the bad part is that the core biopsy remaining in the paraffin block wasn't enough and they used the slide which may give non accurate result but any way we can't do another biopsy now so if they failed i may ask her oncologist about the blood test "neuron specific enolase" but my opinion is that a weak possibility to be true.