pcl1029
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Hi,Monkeytet,
I had liver resection for 8hrs in 2009,everything was fine,out of the hospital in five days. I lost about 20-25 lbs. and regained 30lbs later(in about 4-6months period).
Always consult your doctors first; the following suggestions are for information purpose only.
1. give your father Carnation breakfast drink (200-300cal/can)1 can in the morning in addition to what you have done for his calorie intake.
2.Give another can of Ensure or similar protein drinks in high calories(360 cal/can) any flavor. any time in the afternoon;between lunch and dinner time.
3. encourage him to eat vegetables and fruits ,banana(high potassium);blue berry and the like(high antioxidant) orange and pears (4-6servings/day) ;in addition to the regular meals.
4.Ask your doctor to change Reglan and prescribe something else)- it is drug that increase the motility of the upper GI tract ,therefore diarrhea is a common side effect;Reglan is also an older medication that prescribed for treating nausea/vomiting due to its anti-dopamine effects to block the stimulation of dopamine.Therefore drowsiness and fatigue are also common but less so.
Older anti-nausea/vomiting drugs included
1. Group 1(antidopaminergics).- prochloperazine;promethazine ,reglan.
2. Group 2 like cyclizine, meclizine,dimenhydrinate, benadryl,scopolamine and tigan are belong to anticholinergics group.
3.Group 3 like corticosteroids (dexametason),cannabinoids and hydroxyzine are belongs to the miscellaneous group.
Try to ask your doctor to switch to another group of med if the one your father took is not working or try a combination from different groups.
or use newer ones like the following;
New antiemetics such as the
1. 5-HT3 receptor antagonist group- ondansertron (Zofran), dolasetron(Anzemet), granisertron (Kytril)and palonosetron(Aloxi) and
2. the NK1 receptor antagonist like aprepitant (Emend) and others are on the market ;they come as an oral capsule or tablet.Emend has to be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting.
On one of the ASCO 6/2011 poster session abstract#9091,indicated
“significant clinical benefits in favor of palonosetron were also seen in the delayed and overall time periods on the number of emetics episodes and the severity of nausea.”when compare to the other 3 5-HT3 receptor antagonists.5. if the lab work was done in a hospital,ask your father for permission tolet you get all the copies,including MRI,PET and CT scan and pathology and surgical reports for surgery.(It will be of great value in the future).
A final note,don’t be afraid , but be strong;your father needs you to be calm and confident to help him.From my experience,everything will be fine. I was and I am still a patient of CC. I learn one thing from having this disease;there is really nothing I can do except praying and keeping on learning about this disease.
God luck and God bless you.
BTY,how old is your father?Hi,
As always,consult your oncologist BEFORE any change of your treatment plan.
Thanks to the CC foundation ,according to the package insert I picked up at the Genentech booth for Xeloda(dated 4/2011).
If you are on montherapy only with xeloda; the adverse effect of nail DISORDER is about 7% in a phase II trail involved 162 patients of stage IV breast cancer.
If you are on a combination therapy with Xeloda,the chance is about 14%,and 2% of them is in the Grade 3 category.(the scale is from Grade1-Grade 4 ,a scale developed to measure the adverse drug reaction of medication;Grade 4 is being the most serious.):the chance for nail DISCOLORATION is 6% .
Generally,dose reduction of Xeloda may be needed base on the condition of the nails and other related issues until problem resolved ; this is why you should call your oncologist and make an appointment to let him/her to determine what is the best way to due with the problem.You should not change any current treatment plans until you talk to the oncologist.
There is also a phone # (1-877-987-2487) you can call for support and a oncology nurse who trained about Xeloda will answer your questions about Xeloda 24/7 in 150 languages;it is provided by Genentech,the company that makes Xeloda.
God bless.Hi,
Thanks Gavin.I was instructed to go to” Experimental Therapeutic” oral session to listen to Dr.Khan and Newman about PBI-05204 for a member of us who is currently taking that experimental drug call Anvirzel. Both of the doctors did not show up for discussion.
However, another researcher did mention about PBI-05204 when she compared
it to another compound about the side effects like proteinuria ,fatigue ,diarrhea
,constipation and abdominal pain , just to name a few.I will keep all of you informed as my energy level comes back a bit more and after I review my notes .
McCormick Place in Chicago is the largest conventional place in the world.
It can easily take 30 min to walk from the west to east end.(not counting the distance from the garage where you have to park.)As a patient,I am interested in the near term solution first,what information are available to help me NOW-both in treatments plans and current resources.
I found them surprisingly in the Pharmaceutical companies and in the poster sessions.
Second,I am looking down the road(1-5 years) what will be my options,(that is,if my current treatment plans not working ,what should I do to maximize my chance of survival; and
third what is the future in so call “targeted drug therapy” researches that can help future new CC patients.
I can give you a very simple answer for the last question I raised. the answer is- it will be a long time (10-15 years) before all those experiments which are promising-that is the chemicals showing SOME responses to solid tumors-and CC is one of them- ( they are now testing in mice only in the lab);these are so called “The next-generation therapeutic target and drugs”; an oral session that I attended and I will discuss it after I read my notes.
For the first and 2nd questions I raised,I did find some interesting options or other means to increase patient chances of survival and to better serve” patient specific “needs.
and I will do this first as soon as after I reorganize my materials.
Thanks for the chance to do this ;and next time ,I will know where to look first for the most up-to-date info. for all of us.( I will pay much more attention on current available treatments rather than looking for a magic bullet in the experimental therapeutic elements.
But the trends for all those big and small pharmaceutical companies like Elilly,Merck,Genentech, Sanfofi;Daiichi-Sankyo and Norvartis are toward molecularly targeted drugs research or developing bio-markers for prognostic or predictive purposes.(as the evidence shows here at the ASCO conference, almost 100% in their booths showing videos and printed materials on these two subjects besides advertising their current products like Avastin,Gemzar,Xyloda and Erbitux etc.)
god bless.God bless
Hi,
This is for information purposes only,seek doctor advice BEFORE any changes of your current treatment plan.The “hand and foot syndrome” you mentioned has been reported in roughly 45-57% of patients who is on Xeloda.(package insert of Xeloda)
If I may suggested ,make an appointment to see your oncologist to determine the severity of the problem(there are four grades of severity of this side effect;and the treatment will be different depend on the grade of severity.)
This side effect of the Xeloda is very common ;it may occur as early as 2 weeks after treatment begins. sometimes it may require dose reduction if the problem is severe enough and that is why you need to talk to the oncologist about it.Modification of normal activities of daily living to reduce friction and heat exposure ;keep palms and hands and sole of feet using emollients such as Aveeno or Lubriderm; OTC medications to relieve pain,rash and other symptoms(ask the pharmacists for their recommentions ).
God bless.Hi,
Augmentin was appeared on the DDW 5/2011 conference in Chicago as one of the medication that can caused hepatitis and/or cholestatic jaundice;If I remembered it correctly ,the occurrence rate is between 10-20%.
God blessHi,Patti77,
You are a good researcher,I appreciate your research info. on CC;useful.
There are a few research papers on Octreotide LAR appeared on the ASCO 2011
conference in June in Chicago,I will try to post them later.
One person can build Rome in millions of year,but together we can cure this CC
in a decade.
God bless.Hi,Phil,
You are welcome.
All the people on this board,Lainy,Marion ,Gavin and others,just to name a few,
are caretakers or patients themselves; We all went thru the situations.Thanks to the founder (Stacey)of this CC web sites who had the vision to set this site up for all those around the world who suffer or will suffer from this disease.Without them,I may not be the same with regard to my attitude toward this disease.They are the pioneers of encouragement ,comfort and knowledge of CC.
email me at anytime,bring a digital recorder on 6/9;ask for permission first;American doctors,especially the younger generation of doctors will not mind.
God bless
By the way ,ask your husband’s GP to prescribe an anti-depressant for him if the doctor feels ok for that;it will help him as well as you,(that is tell him if he feels better,the entire family will feel better and he may gain some weight because of the benefit of the side effect of anti-depressants.).Hi,Phil.
Thanks for your compliment. I am just a patient like your husband ,we are in the same boat.Your husband has ductal CC and I have the ICC in the later part of the same year 2009. If you like please read “RFA-a case study of myself” under the “radiation forum” on this web site. I think it may be of some insight for your husband’s case.
In addition to that,here is what I will suggest to you .
1. Make sure the MRI that will be done is” MRI with CONTRAST”on June 7.
It will give a better picture of the internal organs than without.
The MRCP you mentioned is a noninvasive technique for evaluating the bile ducts (eg. any obstruction or dilatation of the bile ducts)
2.For surgical consultation with that biliary surgeon; ask him whether surgery is possible,that is-
1. Is it resectable or unresectable?(surgical consultation).
You mentioned the hot spot is near the portal” duct”in or close to the portal vein of the liver,but which side of the liver,left or right? Is it located inside the liver or just outside the liver? It makes a difference in treatment plans.
Ask the biliary surgeon to explain it to you ,draw you a picture where the hot spot is? explain why or why not resectable?
2. if not, what are the options? embolization?PDT?SBRT? systemic chemo?
and may be of the most interest to you ,from a surgeon’s point of view from Mayo, Is your husband qualify for ” liver transplant” under Mayo’s criteria? and if so, how will he become one locally or must be needed to be done in U.S.
3.Ask the surgeon about his/her opinions to compare on the benefits of additional radiation and /or systemic chemo treatment specific to your husband’s situation.(eg.base on the location of the hot spot,which option is better ? Radiation like PDT ,SBRT? or chemo? or clinical trials or just observation only and MRI or PET/CT in 2 months?
By the way CA19-9 increased from 200 to 356 is not a good trend but not indicative of a bad situation either. In the meantime,just wait till 6/9 and relax.
I learn one thing as a patient,really there is not much I can do except keep on learning about CC,helping myself as well as helping others and trying to enjoy the good days and preparing for the bad days. Don’t worry,my friend,God will never give us anything that we cannot handle.And with His grace ,He will always give us a way out.
God bless.Hi,Gavin,
You are always welcome.The more correct and proven info. we can provide to our patients and caretakers,the better they can be served and help them to understand this long and winding journey about CC.
You started helping out on this website long time ago,I just follow your foot step.
Say hi to your mom for me.
God bless.Hi,
The first message on this forum about CAM is much in-sync with the view about “alternative medicine” by current physicians while I attended the DDW 5/2011 conference.
It will be a long time before FDA can provide the same kind of review and approval of dietary supplements for their claims(ie.milk thistle or melatonin improve liver function etc.;same as for most of the vitamins and minerals.)
FDA official Dr.Leonard Seeff spoke on his own,( but not for FDA),indicated that The Dietary Supplement Health and Education Act of 1994 stated that the manufacturers are responsible for the labeling of the products,such as the ingredients,net contents and nutritional information ONLY but not the unproven claims . So that buyers should be aware that dietary supplement and the like are not drugs; and they are not regulated by FDA as drugs.
There have been significant liver or other organ injury risk reported to FDA (ie. hydroxycab and 16 others just to name a few).
He also mentioned it is difficult to evaluate each herb in the herbal formulations (ie. in the form of soups,tablets,capsules or powder) It is due to source of the crude herbs;the time of harvest;where the herb harvest ; the correct part of the herb being used in the formulation and the method of processing the herbs after harvest.In short,the lack of standard of the crude herbs is the problem.
Herbs and dietary supplements are used as complimentary medicine along side with conventional treatment in CAM.
As far as I can recall, milk thistle (MT)is the dietary supplement researchers mentioned the most at this discussion session, the intravenous form of milk thistle seems to show benefits in their research but now the research have to prove that the oral form of MT,including the dose strength(how many mg etc.);dose frequency(how many times/day to take it) and their side effect burden etc. are acceptable for FDA to look at MT as a potential drug.
A final thought of mine with regard to herbs,
His statement is very true ,for example we always know the Ginseng produced in North America is a lot different from the one that come from North Korea in medicinal property (one is cool and the Korea one is hot in Chinese herbal medicine practice; and it reflects on the price difference too.)
I hope the info. help a bit more in understanding about CAM.
God BlessHi,
As always, please confer with your doctor first before any change of administration medications suggested by this web site including me who was on gemcitabine for 14 month. This is for informational purposes only.
BEFORE Tx
1.Give lorazepam 0.5-1mg or alprazolam,same dose, by mouth 30min. before the start of chemo for anticipatory nausea/vomiting purposes.
DURING Tx
2. As pre-medication prior to gemcitabine to control nausea/vomiting ;Ondansetron(or granisetron or dolasetron)+ dexamethasone as IVPB will be given over 30minx 1dose.(dose determined by body surface area of the patient).
3.Gemcitabine sholud be given just for 30min and no more than that in duration in order to minimize the side effect.;I always make sure the nurse understand this.
AFTER Tx
4. Then when you are home,take 25-50mg of benadryl(diphenhydramine)-an antihistamine and 0.5-1mg alprazolam or lorazepam together with sips of water and go to bed right away, if she needs to vomit,let her do it first,then take the med and go to bed ;she will wake up in about 3-5 hour and will feel better.Encourage her to drink water or juice or soy milk as much as possible especially in the first 8 hour after gemcitabine.(ie;3-4 glass of 240ml size /day or more) to flush out the gemcitabline to minimize its side effects.
5. I do not need any other meds to control the N/V until the next week of chemo;but if you mom needs it,ask to doctor to have some promethazine 10mg on hand for nausea /vomiting and take it by mouth every4-6 hour as needed.
For diarrhea,Imodium or Lomotil are the choices, Take one by mouth every 4-6hrs AS NEEDED for diarrhea and not to use more than 8 tablets/day.Again, every patient is different in physiology and the state of health at time of diagnosis. You MUST consult your doctor first for his recommendation .
God blessHi,
I do not think in the same way as your oncologist with regard to the term “NECESSARY”. in the regimen unless he/she is eager for you to participate in one of the clinical trial like the #25 and #28 on this web site under “clinical trial”
# 25 is currently under study at Ohio University and the other ,#28 is at Univ. of Pennsylvania.If you are accepted,they will work with you to submit the claims and fight for the approval of “off label use “for Avastin or cetuximab and you will know beforehand your financial responsibility.
But please remember any doctor in their specialty can use medications off the label indication for his or her practice and this does not mean they are wrong.
Except for erlotinib,most of the APPROVED chemo regimens related to treating CC with molecularly targeted agents such as Avastin are still under clinical trials for their efficacy and side effect burden.
GEMOX+Avastin ,Erlotinib+ Avastin or GEMOX+cetuximab these three regimens are still on clinical trials.;as well as Gemzar+Xeloda+Avastin and others.
The first -line systemic treatment is either 5FU or gemcitablne base with the addition of cisplatin(the platium group) , or irinotecan or docetaxel.(the taxol group).
Depending on the type , the size and the locations of the CC ;you still have other options like radiation,ablation.chemoembo,PDT,SBR beside systemic chemotherapy.
2nd opinion of oncology consultation is recommended.
God bless.Hi,
If I may suggest-
After completing chemo;make sure you will have a PET/CT with contrast or MRI with contrast done every 3-4 mouths for a year;then every six month for a couple year.(this is the only way to know about the recurrence of CC.)CC is a long and winding road that require knowledge and courage to navigate it.
I was on 14 month of Gemzar and 3-4 months after treatment;I was back to normal.
God Bless.
