willow
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Dear Jetcm,
Is your wife at a major cancer center for cholangiocarcinoma? Does she have Intrahepatic, perhilar (Klatskins) or extra hepatic (distal) CC? Where are mets? Local or distant? Is her overall health generally stable? Many oncologists will try many combinations of meds. Just because they’re not “standard/approved” for CC doesn’t mean insurance won’t cover its use. This approval by insurance companies for “off label” or “compassionate” use is precisely because there aren’t enough standard txs for CC and because these meds have been shown to help some people w CC. We also rec asking your wife’s onc about genetic testing to identify mutations that may help choose target meds (though some are only used in clinical trials at this time). Use the search function on this website to look up anything.
All the best to you and your wife as you navigate this crazy road.
WillowStella,
So sorry to hear of your husband’s passing. What you all went through is so intense and one of the most intimate times. May you find the peace and courage to follow some if those retirement dreams that you and your dear husband had planned. Carry his spirit and good memories with you.
With my sincere condolences, WillowDear Tina,
I am sorry to hear your Aunt Lori has passed away so quickly from this terrible disease. My sincere condolences to you and your family at this time of loss. May God comfort you all.
WillowMichelle,
Thinking of you and your family at this sad time of loss. May you find comfort and peace.
Sincerely,
WillowMichelle,
This is an intense, sad and yet precious time. Hoping you have all the physical support you need so you can simply be there for your husband. May God give you the strength you need to go forward loving and caring for him.
WillowClare,
Lovely and sweet tribute. I can’t believe it’s been a year since you lost your precious sister. Thinking of you today.
WillowYes, good to point out the difference between the off label use of existing FDA approved drugs for CCA and the fast tracking of newly developed ones specifically for CCA.
Below is what I found Marinol. I don’t have experience with this prescription pill but am glad you mentioned it as it may be of interest to others. They mention importance of precise dosage, potential serious side effects from overdose and potential for serious withdrawals (indicating it can be addictive when used long term).
I also want to mention that Dr Sanjay Gupta is hosting a documentary tonight on CNN about medical marijuana in its various forms and uses. Interestingly, on the news this morning, he mentioned another CBD-rich marijuana medication (not Marinol) used as an antisezure med, even in babies, that has very little THC (the ingredient which make a person feel “high”). Other THC-based forms are for pain control, as an appetite inducer and anti-nausea med. The doc tonight is called “Weed 2: Cannabis Madness”.MARINOL ORAL USES
Marinol is aka Dronabinol and is used to treat nausea and vomiting caused by cancer chemotherapy. It is usually used when other drugs to control nausea and vomiting have not been successful. Dronabinol is also used to treat loss of appetite and weight loss in patients with HIV infection. Dronabinol (also called THC) is a man-made form of the active natural substance in marijuana.
How to use Marinol oral
Read the Patient Information Leaflet if available from your pharmacist before you start taking dronabinol and each time you get a refill. If you have any questions, ask your doctor or pharmacist.
Take this medication by mouth as directed by your doctor, usually 3 to 4 times daily if you are taking it to control nausea and vomiting or twice daily (before lunch and before dinner) if you are taking it to treat appetite loss. Follow your doctor’s instructions carefully.
The dosage is based on your medical condition and response to treatment. If you are taking this medication to control nausea and vomiting, your dosage may also be based on your body size.
Do not increase your dose or use this drug more often or for longer than prescribed. Your condition will not improve any faster, and your risk of serious side effects will increase.
This medication may cause withdrawal reactions, especially if it has been used regularly for a long time or in high doses. In such cases, withdrawal symptoms (such as irritability, trouble sleeping, restlessness, hot flashes, and diarrhea) may occur if you suddenly stop using this medication. To prevent withdrawal reactions, your doctor may reduce your dose gradually. Consult your doctor or pharmacist for more details, and report any withdrawal reactions immediately.
Along with its benefits, this medication may rarely cause abnormal drug-seeking behavior (addiction). This risk may be increased if you have abused alcohol or drugs in the past. Take this medication exactly as prescribed to lessen the risk of addiction.
Tell your doctor if your condition persists or worsens.Shari,
Fantastic update! Congratulations and celebration are in order after months on a tough chemo regimen. Hope Erbitux alone is easy in comparison. You have an amazing story.
Can you please share the face product that helped heal the acne rash induced by chemo? From your older post about acne, I saw they had you on a topical med (was it clindomycin?) and doxycycline pills. Saw too that at one point you were using Benadryl and hydrocortisone cream for the rash on your body. Was there also a good over-the-counter cream you used for your face? My sister will be starting irinotecan alone or with Erbitux. She had the acne rash before with Taxol, mostly on her scalp but it was distressing to her.
Sincere best wishes and healthy blessings!
WillowIm so sorry for what your son is enduring. You have not posted anything inappropriate. This is a great forum to voice your concerns and ask for support. I don’t know how to help specifically with where to go in your area (I live on West coast) but clearly he is still having acute problems so I would seek a doctor (GI or surgeon) ASAP to eval that stent. I would be surprised the onc would proceed with chemo until his symptoms are under control and he can hold at least some food down. To answer your question about the stent, I believe the stent in the duodenum is supposed to help food pass when tumor is compressing it from the outside or even growing inside it. Which was case for your son? Sometimes surgeons will perform a (palliative) bypass surgery but not sure protocol for that. LisaS on this board had a similar problem last year and I believe she is doing much better. Try searching her posts under user name search.
Sincerely,
Willow
