jliu168
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Hi Jeff,
Been off for a while as traveling with work. A bit of advice re Platelets, eat more protein, and yes Gatorade or Sport Beverages!
Also in case you have any nosebleeds (my father sent to ER twice), get them to give you TRANSAMINE right away, as it helps stop bleeding. Also my dad had transfusions as well to boost count.
Are they checking your ALBUMIN levels? Maybe ask for that next time you get a blood test.
Keep at it and best of luck.
Hi Jeff,
Glad to hear your follow-up to the docs went well, and pleural effusion activity stable. Wish you all the best and yes agree let it clear up before you start treatment again.
All the best and take good care!
Hi Jeff,
Been a while since I posted as still recovering from my father’s passing. Been reading your posts though and after reading this one, really happy for you and wish you all the best. Hope you zap that new nodule, and as for CA19-9 Marker, couldn’t be better!
Just a bit of advice, keep an eye on that pleural effusion. Are you breathing heavier? Sorry to ask, but just thought you should keep an eye on it and let the docs know.
All the best and keep at it!
Dear All Members,
Many thanks to all of you for your kind messages and support during this most difficult time. I had my father cremated yesterday, and it was one of the most difficult moments in life seeing him being cremated. On the other hand, I know that his soul is already in heaven and that by cremating him, I have gotten rid of those dirty rotten cancer cells and now he is finally cancer free.
It is an ugly cancer and I hope that research and forums like this help familes and patients be more aware and have more answers for this horrible disease. This website has proved to be most useful and many members really gave myself more understanding of the disease and what to expect.
I hope that all of you maintain positive and all the best!
Thanks again and God Bless.
Dear Jules,
I can totally understand and imagine the pain that you are going through right now. My own father (my best friend) has this horrible disease. His condition is not so good right now, but I still hope for the best, and doctors are helping his as much as they can. Over the past few weeks have read your posts and can understand the pain and helplessness that you are going through.
At this point I can only say that you and your family are in my thoughts and prayers and I hope that the pain and suffering will ease with time. Now is the time as ever to stay as strong as possible, and take good care of yourself.
Stay strong!
Reading all your messages, can totally understand what you are going through. My dad is having some slight confusion and also elevated ammonia levels in blood. His BUN is also elevated. I asked the doctors if it was a sign of liver failure, and they said no, but the BUN level is due to probably dehydration and also ammonia due to liver not being able to fliter out all toxins.
My dad was really good earlier this week and then had his AVASTIN / GEMZAR on Wednesday and then went into this weird state on Friday. Cannot understand how he can change so quickly. The CT scan in the emergency room done yesterday shows still disease progression and only his right side liver is clear of tumors. His Bilirubin is elevated at 2.1 and slightly jaundiced.
I feel so helpless watching him like this and can only say to those going through the same thing to hang in there and keep at it!
Hi Jeff,
Sorry to hear that the tumors have been resistant to Oxy / Xo regimen. I read an article on http://www.pubmed.gov / http://www.asco.org, with some reference to Docetaxel treatment and response rates. Response rates were quite high, but the article is from 2000. I do not know what other regimens you have been on; currently my dad is on GEMZAR / ERBITUX, and now we are going to add AVASTIN, as he had a good, but short response with ERBITUX, so oncologist recommended to add AVASTIN (BEVACIZUMAB) to treatment.
I hear they have some really good results with Gemzar / Cisplatin? Anyhow the oncologist says these days they like to go with some form or “target therapy.”
Best of luck to you, and let me know what the oncologist says and what route you decide to take.
Take care.
Hi Campbell Zoe,
Erbitux unfortunatley is very expensive and not many insurance covers this medication. Our national health insurance does not cover it, so it is fully self funded. We are now also going to add Avastin to the treatment, and will respond in due course on how that responds.
Best Wishes to you and your dad.
Dear Patrice,
Sorry to hear of Dave’s situation with his heart. Can only say please hang in there, and I guess now that you know of the problem, doctors will be more careful when applying the chemo as some medications do cause hypertension.
Have a good weekend / short vacation and all the best to you and Dave.
Hi JeffG,
Thanks for your advice and sorry for late reply. You are right Necrosis can be good / bad. I checked with the doctor and he said that in tumors case this happens before shrinkage, so hopefully on our next MRI we will have some shrinkage. I also asked him about GANGERENE and he will monitor the situation. Many thanks for your advice.
It has been a roller coaster ride for us all. We were at the hospital past two days as my dad was convinced something wrong with his stomach. After an endoscopy they found some mild infection (not ulcer yet), and this is what might be causing his discomfort in addition to gas. The hiccups started after his DECADRON / GEMZAR, and then the doctors decided to try 1/4 (25mg) of CHLORPROMZINE! And let me tell you all this, DO NOT TAKE THIS MEDICINE. It sent my dad into basic rage / anxiety for about 3 hours until he was finally able to calm down and rest. He is now sleeping and hopefully this medication will be out of his system. It is an anti-psychotic drug, but if you are not psychotic or schizophrenic (pardon sp), then recommend you not to take this at all! Try something else, i.e. alka seltzer or anything, but this drug is absoulte nightmare.
As for CA 19-9, doctors think that although it might be some indication of tumor activity, but I think other effects, such as infection can cause this to go up and down. We are ignoring it for now, my dads at 1305, and going with the 2 month MRI / CT Scans for confirmation. Would like to see what other’s CA19-9 levels are like and how they have gone up / down???
Sorry about the rambling but had to take it out somewhere!
Dear Cambell_Zoe,
My dad is currently on this regimen. His protocol is as follows,
allermin
Erbitux (CETUXIMAB, C225)
decadron
Gemzarhe has three weeks of this (once each week), with the 3rd week having a double dose of ERBITUX, then one weeks rest, before starting again.
Before he was on Oxaliplatin / Leucorvin / 5FU, but that was not working very well. Before starting this regimen, his CA 19-9 marker was at 1450, but after one cycle (3 treatments), CA19-9 dropped to 134. He has had another cycle and we will continue to monitor tumor markers / and MRI later this month.
This regimen has some minor side effects, acne like rash (but apparently the more you have the better response), fever, hiccups, general weakness. Usually for 2 days after chemo, my father has these symptoms and by the 4th day he is back to normal. This protocol was recommended by our oncologist, but also as in the UK, our insurance does not cover any costs. Will update MRI results in due course and best of luck.
Hi Jeff,
Thanks for the advice and confirmation. I thought too that it was the decadron, but apparently they give my dad decadron before GEMZAR infusion, it can be either given or not given. What they usually do is this;
allermin
ERBITUX (C225)
decadron
GEMZARApparently they can either adminster the decadron or leave it out, but I do not know if it does help the chemo or not. It seems like if Decadron is given, my dad feels fine 3-4 days after the chemo, then on the 4th day he gets Fever / mild stomach upset. He has hiccups when Decadron is given. If Decadron is left out he almost has fever right away on the night after discharge from hospital! Will ask the docs a bit more about it next week.
How is your pain on the ribs? Are u back to 100%. Take good care.
My dad gets these hiccups 2 days after Gemzar / Erbitux chemo, and the hiccups last for about 2-3 days. It might be the Decadron (before the GEMZAR), but do not know if this is the case. He is taking some anti-gas medication (GASCON) to relieve the symptoms. He also gets fever for about 3 days after his chemo sessions in which he takes (SCANOL) i.e. (Tylenol) to reduce symptoms.
Lately cracked skin on his fingers are an issue along with acne on his upper body / head. Doctors have said that this is normal and as for the cracked skin on his fingers, has prescribed MUPIROCIN and daily soaking in BETADINE / SALINE 1:50 which is helping the healing processing.
Dear Jeff,
Congratulations that you caught it early, and am really happy for you! I really admire your positive outlooks and you are the one that keeps us all in good spirits. Please take good care and rest more.
All the best.
