fatema-alzahraa
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Hi,
she received radiotherapy on lumbar vertebrae then she started chemo (one cycle) after it she is still complaining from rt lower limb pain so the gave her another session of radio over sacrum and sacroiliac she finished it last wednesday, her 2nd cycle of chemo will be on next monday (GEMOX)Hi,
i want to share you my mother’s last updates, she completed her first cycle of GEMOX her hemoglobin, WBCs and platelets decreased, also she took another 5 days of radiotherapy on her sacrum and sacroiliac joint as she didn’t receive radiation over them in the first session this time pain improved by 10% only which is not a good sign.
The other important thing is that i asked her oncologist today to add cetuximab (Erbitux) to her regimen actually he didn’t support the idea very much but when i insisted he accepted but on one condition which is to accept that it is a drug under trial and may not be effective. I want to know your experience with that drug, its side effects are scary espicially cardiopulmonary arrest in patients on radiotherapy. Her oncologist said it is safe and only acne-like rash is its side effect. please i need you opinion i’m really confused.
Thanks.Dear Janine,
Sorry to hear about your illness, my lovely mother also recently diagnosed as unresectable metastatic cholangiocarcinoma (her complain was typical sciatica!!!), i couldn’t describe how i felt to you?? i have been shocked!!! but i’ll give you an advice STOP reading about survival it is really destructive, simply no body knows when his life come to an end whether he is healthy or not. Trust GOD and be sure that he will cure you as i’m totally convinced that he will cure mom. Keep searching the internet for the last updates and never loose hope and i prefer that any body performs that task on behalf of you to avoid reading the “Painful” words of scientific papers, it is really hard on health care providers to accept that disease, i’m a cardiologist and once the doctor placed the ultrasound probe on my mom’s abdomen i have been collapsed so i really know how do you feel, wish you and my lovely mother very speed recovery.Hi, thanks Percy, Marions and Byron for replies, i’ll tell them to try to find a larger vein next time, i don’t know for how long this will work as i know veins become less available with chemo, mother now is complaining from constipation and i’m trying to give her good hydration.
Percy i’m so depressed i sent an e.mail to the author of the “SRFA in unresectable cholangiocarcin.” but unfortunately he replied that her condition will not be suitable as there must be a safety margin of 0.5-1 cm so it couldn’t be used in multinodular type as there may not be sufficient liver tissue after ablation. I sent an e.mail to a hospital in germany where they use hyperthermia in treatment and their reply was
“As there is a wide spread metastatic disease a treatment consisting of whole body hyperthermia together with chemotherapy using the drugs Oxaliplatin and Gemcitabine. We also could use local hyperthermia on the different metastatic sites.In addition we would perform complementary treatments to support the immune system, to reduce chemotherapy- related side effects and to improve the quality of life. These are treatments like infusions with high doses of antioxidants and vitamins, infusions with homeopathic medications for detoxification, immunomodulation with thymus peptides, magnet field therapy, ozone therapy, oxygen therapy and physiotherapy.Tarceva is not likely to work in cholangiocarcinoma (also the side effects are significant).
“
http://www.hospitaldrherzog.de/
what do you think??? i want to ask about something more, is it possible for the tumor to regress in size with chemo.?? and if yes after how many cycles of chemo should we evaluate???
Thanks,Hi Gerry, thanks for your reply wish u and my mom speed recovery. The nurse told me that pain at injection site usually occur with gemzar (although i searched the net and i found that it is a rare side effect) but also she told me that she couldn’t slow down the infusion as it increases drug toxicity which i found it true while i was searching the net so take care. If u please i want to ask u something, did that combination work with u? the oncologist told us that if neuropathy progressed to grade I or II we will stop oxaliplatin!!
Thanks.Hi.thanks Percy, marions and Lainys for your advice, i already consulted several oncologists from the university hospital and her treating physician is a professor in university hospital but i’m sorry to say that they are considering her case as in late stage, regarding centers caring about cholangiocarcinoma cases unfortunately we don’t have a specialized centers here, all are oncology centers. I’ll never accept that she is a late case i consider that only she needs treatment and i’m trusting GOD and that he will cure her although i can’t be strong all the time but i’m trying.
I want to share you my mom’s first day in chemotherapy she received oxaliplatin (80mg/m2) and Gemzar (1000mg/m2) today but she had severe terrible pain once they connected gemzar into her cannula my mother cried much and it was awful 30 min., the doctor said that gemzar doesn’t cause pain!!!! in addition to pain minimal rash appeared on her forearm, pain decreased after that but she still complain of hyperthesia at site of injection,
another complain is hyperthesia in her tongue once any fluid espicially “cold” comes in contact with it. Could any one help me in understanding those complaints?
Thanks.Thanks Pamela for your support and sorry to hear about your daughter, i wish ALLAH will cure mum and your daughter too.
Thanks PCL1029 for your concern, my mother is 57 years old, thanks GOD she is in good health apart from back pain due to metastasis and ofcourse she is psychologically affected, in the triphasic CT liver it revealed multicentric mass-forming cholangiocarcinoma with (large infiltrative mass lesion involving segments IV and VIII and partially extending to segments I and II with multiple smaller lesions studded in all segments) with nodal ( celiac, para aortic and retro-crural) and osseus deposits
the malignancy was discovered on 25th october and final diagnosis was on 20/11/2011 , do u think she will be suitable for radiation?? do u have any idea about stereotactic radiofrequency ablation (http://www.ncbi.nlm.nih.gov/pubmed/22006031)
do u have any idea about the combinations u mentioned? are they applicable in the states , even if they are still under trial? could i get them in Egypt if they are not available? according to my knowledge Tarceva (Erlotinib) only is available in Egypt.
please if there is any hope even if it will be outside Egypt please help me, again thanks for your support and wish u and my mom get well soon.
