pcl1029
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Hi,
It is not a bad idea to ask the oncologist on Thursday what is the correct diagnosis?
Is it Carcinoma of the Unknown Primary (CUP)?
If so, ask the doctor WHERE he thinks the cancer begins and the number of the organs that have been affected based on the results from the PET scan.This way it will help you understand your illness better.I am not a doctor but a cc patient.
Your are in good hands at OSU for clinical trial.Below is a quoted message from this web site whose dad had CUP diagnosis.in May,2011.
quote=kamnbelle]Hi, all. My 74-year old father definitely has cancer, they are having a difficult time determining what the tissue of origin is. His oncologist at MD Anderson used the following factors in diagnosing cholangiocarcinoma:
1. Pain in upper right quadrant and corresponding back pain;
2. retroperitoneal mass which biopsy showed adenocarcinoma likely from pancreas, biliary, stomach, colon, prostate, lungs
3. Stains showed CK20 neg and CK7 positive; plus tumor markers normal except for elevated CA19-9
4. Normal PSA – ruled out metastatic disease from previously diagnosed and treated prostate cancer (with radiation)
5. CT scan w/ contrast showed suspicious tissue and slight dilatation of duct in segment VII of liver
6. Mass which includes positive lymph nodes immediately adjacent to suspicious tissue mass; also positive para aortic, mesenteric lymph nodes
7. appears to be no growth into any other organs (i.e., pancreas, abd aorta, SMV)So, basically the doctor staged him as IV because there were positive lymph nodes that were not immediately adjacent to the suspected TOO (tissue of origin). Various MRI, PET scans, etc. show no mets to any other organs or brain or bones – just these lymph nodes. The oncologist will not refer us for a surgical consult b/c he said it’s so obvious that it is not resectable. As I understand it, the only chance at a “cure” is complete resection.
My dad has not lost weight, has a slightly reduced appetite; and the pain in his abdomen only started in December 2010. He has been taking pain meds for a month now and he has to take more and more to control the pain.
Dad will start cistiplatin and gemzar this week; one infusion every 14 days; then back to MDA in eight weeks to determine if the lymph nodes are responding.
God bless.
Hi,Kat11,
Not did i do not care about your dad’s condition;But as a patient myself,I know there are a lot of things going on in a patient’s mind that other people except him or herself may not be totally understand; things like how and where to get the best treatment so that I can live as long as possible to take care of me and my family ; or if this works as advertised,that it should work for me too. Deep down ,the REASON is simple,as patients,we are all afraid of the time will come before we we want to.We may appear to be very tough or logical in front of other people,but inside each of us,at least for myself,even I think I know what to do,even I think I have an upper hand on the knowledge of CC; and even I have great medical resources for continuing care and treatments of this illness. The UNCERTAINTY of the future with this CC illness in my mind is a very heavy burden. And I think your father will have the same thoughts and feelings too. Therefore if you have tried your best to help your father ,then no matter what will happen in the future, you look back and your can say to yourself, I did my best and had no regret.
BTW, base on your family history,I strongly suggest you should take an ultrasound of the abdomen and liver,or better to have a CAT scan with contrast of the chest ,abdomen and pelvis done before you are 45 years old and repeat it every few years for early detection and treatment of the same that your father and uncles had.
I believe choledochal cysts might be the genetic risk factor for your family’s prevalence of CC history based on the articles I read about CC.
Again, I am not a doctor,I am just a patient. good luck and
God bless.Hi,mn,
Thanks for your compliment. I looked over all your messages entry one more time and I found one thing I should address to you first. You mentioned about your aunt passed away 2 thanksgivings ago because of CC too. Choledochal cysts,Caroli’s disease and congenital hepatic fibrosis are mentioned as genetic or congenital risk factors for cholangiocarcinoma in research articles. since I do not know about your age;if possible ,you should try to get a Cat scan with contrast of the chest,abdomen and pelvis or at least an ultrasound of the liver and abdomen to check yourself out every few years after the age of 45 to provide early detection of the same .In general,tumor growth doubles its size every2-3months,some are faster and some are slower;therefore if your mom had been on Gem/Cis chemo for about 2-3 months after the most current CAT scan result;then the diagnosis that the Gem/Cis was not working may be correct.Based on your info,your mom might have FOLFOX-5FU,oxaliplatin and leucovorin as chemo and was not effective;as well as the first-line chemo Gemzar/Cis. If the doctor wants to try a new chemo regimen,that will be fine;but to say that this is the last chemo that will work ,may be he is referring to the current first-line or available chemo protocol only and not counting the other possible treatments and clinical trials.
There are molecular targeted agents such as Avastin,Tarceva,Erbitux,Nexavar and panitumumab (this drug is on clinical trial)and even the oral everolimus that is used for pancreatic neuroendocrine tumors may be of use in the future.And as some member on the web site told us that Dr.Bruckner in down town New York Hospital loves to use ” chemo cocktails” -consist of 5 or 6 different chemo agents at low dose combination to treat CC. I personally ordered and await on a report of his additional findings that supposed to be done and published in April on the J.of clinical oncology but I still have not gotten the article. So I have no opinion on Dr.Bruckner’s chemo regimen.But if you look under “bits and pieces” on the chemo forum on this web site,his result that I saw on ASCO 2011 poster was pretty good.His chemo regimen is not the conventional or traditional type, so you may have to talk to his office himself or his patients for outcome assessment .
Current recommendation suggested by the articles,in your mom’s case, will be to join a clinical trial through large university hospital if possible.
God bless.Hi,
John Hopkins for sure;no doubt.
BTW,I am living around the Chicago area and I am a patient also.
God bless.Hi,
I am a patient of CC for two years.
You did the right thing to let your mom decide her limitations.Chemo may sip her energy a bit but but no means indicates any limitations of activities. She will know how far and how much she can do. so don’t worry.
BTW,when you know about what chemo next Monday and if you have questions about them,please feel free to ask .
I am not a doctor,but I learn a lot from this web site too that I think I can be of help to you in understanding this illness a bit more in the future.
John Hopkins is among the best choices for treating CC.
God bless.Hi,
Thanks for your compliment.
For pain control,please go to the experience forum on this web site,and look under the Pain Management blog;read about “The use of opioids” for pain control,it may provide some help in managing your mom’s pain.
Since your mom is in the hospital,Dilaudid IV by the nurses or Dilaudid PCA(your mom can control her pain better by her own using the pain button to give her a dose of Dilaudid on demand.);when she discharged by the hospital,Fentanyl patch and quick dissolved tablet can be used.If I may,surgeons excel in doing surgery,therefore they may not know about current medical intervention in treating CC like other specialists do. It is not uncommon for surgeons to say things like that as you might have the same experience back in 2005, when your mom first diagnosed CC. So don’t pay too much attention to it. I once asked a surgeon about my sister-in-law who have stage 4 CC mets to the omentum,he took a look at the CT scan report and recommended hospice care only.It was almost 9 months ago.She is on chemo treatment now and shown partial response to the Gemzar/Xeloda treatment. (that means her tumor shrinked at least >30%) and she went back to work full time this week.
That is why 2nd opinion is important.
Tell your mom everything is ok at this point;and talk to her GP for his/her opinion about the future course of treatment plans if you do not want chemo or radiation treatment.But don’t be afraid of chemo ,it is much better in terms of tumor response and control of side effects like nausea nowadays as compared to say,just 5 years ago.
BTW,How old is your mother? Age is a risk factor in determining treatment plans.
Keep in touch and we will learn from each other as well.
Thanks for your prayer.
God bless.Hi,
You can try Robitussin to loose up the cough first;if after a few days the cough is still hard;then you need to see the doctor to check out whether it is asthma related or bronchitis after the Run for Life.
He will prescribe medication accordingly.
God bless.Hi,
Thanks for info.
I think your mom will do fine.
If she develops pain after the WBC cell shots(Neupogen),just take a couple
Ibuprofen or Aleve or Tylenol if doctor ok with it.(It also comes with a long acting formulation too called Neulasta,so save your mom a few trips to the doctor’s office if the doctor and your insurance company approves its use.)Since the CC had metastasized to the pelvis,systemic chemo like Gem/cis is the first-line treatment choice;For some reasons, Gemzar/Xeloda does not always work as well for intrahepatic CC as for ductal CC;but it was a logical choice for CC with gallbladder involvement. If she is doing EGD,she can ask the doctor whether she can have the colonoscopy done at the same time.In this way she can have both done at the same time and only drink the stuff and NPO once and best of all,it will provide your mom the current condition of both upper and lower GI information.
God bless.Hi,Mn,
Is it intrahepatic or ductal CC?
where the tumor is/are located?
did it metastasized ?
How many courses or cycles of chemo your mom had so far?
and what city are you living in?
63 years is very young and being an Itailan is a very good thing if she is very stubborn and insisting on having chemo like your said.
Determination to fight to the end or accepting reality and finding ways to get better is a very postive attitude and can be of great benefit in fighting CC.Gemzar/cis is tougher than Gemzar/Xeloda but your mom’s fighting spirit will trump over that little increase of uncomfortable side effects. If she takes meds for preventing nausea and vomiting and take things easy,relaxing and doing thing when she feels able to do,if so,let she do it. Stage 3 or 4 does not matter as far as I am concern.the most important thing is the courage to accept reality and deal with it like your mom.
God bless.Hi,
I was on Gemzar for 14 months and had little side effects and went to work as usual at my work place;in addition,I did yard work,mowed the lawn and the like as required by an unwritten code for married man that taking out the garbage every Friday was a “must do thing” or died.I also enjoyed going to movies with my kids for some family bonding time.(ie;when we all saw the movie “UP” ,when the wife is dying;the old man’s courage and determination to find the paradise that both of him and his wife had dreamed about for their honeymoon;I could not help my tears coming out.those are the moments a family can share and will remember forever.)Different chemo presents different side effects for the patient.I will need more info. on that to help my research on this subject for you.
The messages you posted here in the past indicated some of your family members are doctor and nurse.
They can explain all the questions you asks in a better way that most of us can;
Have you try to talk to them first?
Depends on the stage of cancer and the risk factors like age, current health of the patient and underlining disease state and the progression of the cancer.
Your family member who are in the medical field and close to your mom should have a much better picture about your mom’s condition than us far away.
But if you have a specific concern after talking to your medical family and don’t
quite sure what that mean,I can try to help you out on that.
God bless.Hi,
I did have night sweats a couple times during my 14 month treatment with Gemzar.It was not the drenching type ;it started from the chest,it was wet and all I did was change my undershirt and went back to sleep. I could not recall whether it was a hot summer nite or in winter.A study involved 36 outpatients who had GI reflux symptoms reported having night sweats;80% of the the 24 patients had frequent night sweats reported having GI reflux symptoms .With appropriate treatment for the GI reflux,all had relief of night sweats. However it may not be easy to generalize these results due to possible bias.
Another study conducted in 100 hospice patients with cancer,16 reported sweating,mostly occur at night;sweating did not correlate with tumor type,pain, or medication use.
Malignancy(soliod tumors and lymphoma etc), infection (tuberculosis, HIV, endocarditis),medications(OTC medications such as tylenol,advil,Aleve and migraine medications such as Zomag and Imitrex and Maxalt;blood pressure pills like diltiazem,Tizac -those calcium channel blockers and beta blockers like propranol,metoprolol and atenolol),endocrine causes(thyroid,diabetic) ,neurologic disease,menopause and idiopathic hyperhidrosis are possible causes and diagnosis for night sweat.
Your family doctor diagnosis of paresthesia (lost of sensation)was correct. she should regain feeling with no trouble if the diagnosis is correct.
God Bless.Hi,
I am just a patient like your mom.this for your info.only. consult doctor is a MUST before any change of current treatment plans.For constant cough,you may ask the doctor to prescribe benzonatate 200mg and take it as recommended by your doctor.
For nausea ask him to prescribe Zofran ODT 4-8mg as he /she recommended,
the ODT formulation dissolved right out of the tongue for fast drug action.
It is also a good idea to get Xanax 0.5-1mg and take it at bedtime as prescribed by your doctor to help your mom relax and sleep.
For shortness of breath and adominal pain,it is related to the ascites and doctor’s advice is needed for proper treatment.Your mom’s oncologist may be right that your mom’s CC may have returned.
Chylous ascites is milky in color and rich in triglycerides which produces by the liver in general. It occurs when the lymphatic system was blocked due to traumatic injury or obstruction by tumors(ie:abdominal malignancy and cirrhosis)
In the mean time before the actual diagnosis is finalized, uptodate.com suggests a high protein and low fat diet with medium-chain triglyderides(MCT).
The ascitic fluid should be tested so that the doctor can rule out infection or portal hypertension besides malignancy.
Also up to 21 liters can be removed without fear of hemodynamic consequences for paracentesis. Lasix and aldactone diuertic should be suggested if appropriate and nutritional supplements should be suggested to maximize caloric intake for patients who have poor appetite.
God bless.Hi,
I am a patient like your mother who have CC for 2years living in Chicago.There is a clinical trial currently going on for a while at the cancer center at Ohio state university by Dr.Saab and his oncology team involving the use of Gemzar/Xeloda and Avastin which has shown good results for CC as well as CC which metastasized to other parts of the body.
Your mom has ductal CC and radiation may be of value at this point.Chemo treatment is generally preferred when the cancer metastasized to other parts of the body.The advantage of chemo therapy is especially useful in providing systemic coverage for the whole body .
I think OSU is the best 2nd opinion and place for treating your mom and it is right at your door step.
It makes a big difference if your mom is being treated at OSU as compare to”having consultation with her colleagues at OSU.”and do the chemo for your mom. –a team approach vs an individual making decision;a more coordinated treatment plans(ie: labs,stents replacement,interventional radiation treatment and chemo therapy and detailed check list for the treatment progress.)You are lucky to have OSU clinical trial so close to you.Good luck and take advantage of what OSU can provide for you .
God bless.Hi,Patty,
I am a patient of CC for 2 years,I am not a doctor.
The info.I provided is solely for information purposes only.doctor consultation is a must for changing of treatment plans.From my point of view,if you had allergic reaction to any drugs before ,it will not be a bad idea to get an” Epipen”-a easy to carry injection of 0.3mg epinephrine for emergency use.;more or less the same as to carry a candy bar or a tube of glucose for diabetic patients when they have low sugar and need it right away.But be sure to ask the doctor if he/she agrees to the idea.
Most often,for the infusion reactions, double the iv dilution volume (ie:from 100ml to 250ml or from 250 to 500ml or 500ml-1000ml;or increase the infusion time of the chemo(ie: from 30 min to 1hr or from 1hr to 2-4 hr) will be enough to solve the problem.
Pre-med with dexamethasone(a steroid) with Zofran or Emend(an anti-emetic)will also provide protection of n/v as well as for allergic reaction to a certain extent. Benadryl Iv and famotidine(pepic) Iv are also given if needed to prevent allergy in the future.But if after the above adjustments to the chemo therapy and still having allergic problems the following will help understanding of the problem.According to Clinical Pharmacolology.”anaphylactoid reactions such as yours,flushing,wheezing,tachycardia,itching,abdominal or back pain and nausea are not uncommon.There is an increasing incidence of hypersensitivity(allergic) reactions in patients receiving repeated courses of cisplatin and usually develops AFTER>/=6 courses of cisplatin;reactions may occur up to 3 days after therapy —-.”
There are other chemo therapy such as Gemzar/Xeloda or combinations of 5Fu and molecularly targeted drugs (ie:Tarceva);MoAbs such as Avastin;also Erbitux to name a few.Desensitization (which involves readministration of the implicated drug),in this case,cisplatin ,performed by allergists or experienced oncologists who handle desensitization protocols by themselves before could be of value if continuation of cisplatin’s potential benefit of further treatment and there are no other reasonable alternatives exist.
Cross-reaction(that is a patient who is sensitive to cisplatin or carboplatin may tolerate the other agent without the need for desensitization.—May,2011 uptodate.comGod bless.
