Austin Newly diagnosed (stage 4)
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Well, that is good news. We don’t believe in time lines either and I am glad to hear that was their attitude. Good luck tomorrow!
We did not ask..And NOT doing Chemo was never mentioned.It was decided to give it a shot as long as my husband was strong enough and could handle it. They do the blood work right there and he was strong enough for the second cisplatin Chemo tomorrow…so on we go…
I asked the ONC nurse and she said they never give a timeline..because everyone is different and one never knows..and you know what , we all agreed!
Thanks again for all your words and thoughts…
Sincerely,
The Austin FamilyHi Austins. I am so sorry for what your family is having to go through. Strange, but if you have read any of our posts you would see that CC seems to be only for the strong! Who ever asked to be this strong, right? I also feel that you will know more after chemo and with the next PET Scan.
Teddy’s ONC used to give him his RX for the PET way ahead of time as well. You are doing all the right things, unfortunately it is always a wait and see game! Patience is not my strongest suite but somehow I garnered it when needed.
I am curious if you asked the ONC what the prognosis would be with and without the chemo.Thank you for your Post! WE will certainly read that! This was our first Pet Scan…and we are learning. THe oncologist nurse explained to us that this is a definite waiting period…and that is what we are doing……THank you so much for all the info that you provide for us..
Very much appreciated,
Sincerely,
The Austin FamilyHi, the austin Family,
Thanks for writing back about the age.Below is part of a reprinted message on the experience forum from this web site under “Ultrasound,Cat scan,MRI message.” you can read the entire message if you want to.PET Scan allows visualization of CC because of the high glucose uptake(SUV) of the bile duct epithelium(the lining )– the “Hot spots” will light up on the PET scan and show the relative cancer activity of the lesion by the SUVmax value.
A PET scan therefore can help to tell if the bile duct obstruction is caused by a cancer or benign lesions.PET scan can be useful in determining the cancer may have spread or return after treatment.
In general SUVmax value>3.9 is an indication of cancer activity of the lesion while value<3.9 may not.But the diagnosis must also be made in conjunction with the size or the volume of the lesion that shows the SUV max activity.(the SUVmax range that I saw so far is between 2.0-36.4 in CC);and PET is more accurate when using in intrahepatic lesions than extrahepatic lesions in cholangiocarcinoma diagnosis..
there are also some good info on”the Adverse reaction and side effects” experience forum for hiccups;nausea and vomiting.I am a patient like your husband ;and I am not a doctor; but with regard to having a 2nd opinion on chemo,I will wait till the next scan(usually 2-3 month after the chemo starts ;ask the oncologist to get a Rx for your husband to have the scan done in case they forget to give him one;) ;the scan will show whether the chemo works or not; and you can make the decision at that point with the oncologist.
please keep us informed and hopefully we can of help as well.
God bless.Hello..My Husband is 58.
..We started Chemo after Christmas..Dec 27th..Gems and Cisplatin…WE go tommr for another round of Cisplatin..He got the hiccups on the 2nd day after chemo and that started the vomiting..but not too badly..He sleeps all day and barely eats at all….but drinks water to take his meds..which are for the pain..Perhaps he has had a BOOST liquid drink, a few mouthfuls of broth and a few sips of a milkshake..He is not interested in eating..He just goes back to sleep..
The Chemo nurse handed us the results of the PET scan as we sat waiting..
I wish I could understand the scale of the SUV’s in ranges like 6.5,4.5,1.2-1.7…TRuthfully we would love to get another opinion and of course hoping chemo will halt, albeit,temporarily some metatasis..and of course, hope, prayer and miracles….never say never…BELIEVE!…..But Here is the news!
This is a brief summary:
Periportal adenopathy SUV.6.5
Periperiphal peripancreatic Lymph nodes SUV 4.5
para aortic lymph nodes near left renal hilum measure 11mm short axis SUV5.2
Innumerable bilateral hilar and mediastinal lymph nodes SUV as high as 5 with anatomic size in the 8-12mmshort range axis
2 left upper lobe pulmonary groundglass nodules 9mm with SUV1.2-1.7
Left cervical level 4 lymph node has SUV4.2
Numerous Osseous lesions, including mid-sternum,multiple spinal sites(including bilateral T5 pedicles) left more than right ribs,and scattered about the pelvis with SUV3.7-4.2 (no specific risk for pathologic fracture)
IMPRESSION: Findings Are compatible with widespread lymphatic parenchymal and osseous metatastic disease!If anyone has any insight or any suggestions or anything..Our Family is all ears!..So let us know any thoughts or any anything!!!
WE thanks EVERYONE is advance for all your prayers, hope, insight a!nd knowledge!
Very Sincerely,
The Austin FamilyDear Austin Family,
I am sorry to hear of your husband’s diagnosis. I would like to welcome you to the family. I know things are a bit overwhelming, but once chemo starts you will feel like you are fighting this thing. Come visit this site often to ask questions, vent your feelings, or just look for support. You will always be welcomed with open arms and feel like you are home. Good luck to your family. Wishing you all the best.
Love, -Pam
I feel for you and very much relate to your frustrations as most of us have similar stories to tell. All I can tell you though is that everything will fall in to place. Often times it takes eight weeks or more before treatments begin and although, switching to another oncologist may be an option the results may not come about faster either.
Hang in there. You might be hearing back from Dr. Kato and that again will set other things in motion.
Oh the never ending frustration of our medical system.
All my best wishes,
MarionFirst the easy part. Hiccups. My husband had terrible hiccups for months after his Whipple. NO one could come up with a solution and then we were told by a Pharmacist to try Brioche. Itis sold over the counter at Walgreens/Cvs and is in a blue bottle. Much like Alka Seltzer. My husband took it once and hiccups left. He then used it for indegestion. It works great. Our other popular solution on here is to take a teaspoon of sugar.
While I am not a Medical Professional I learned through the last 6 years to trust my gut feelings. It sounds to me like your gut is saying get to Dr. Kato or see if you can get somewhere for a 2nd opinion. A Doctor should not be telling a patient that they are too busy to be seen!
Keep reading and learning as knowledge is the best tool to fight this CC with!!OH..and as an addendum to our previous post…is that Mr Austin (my husband) has the stents and they are working beautifully.He was jaundice..but has regained his color…so that is good…..I see so many people speak of the ERCP procedure..so we can check that, for now, off the list! Thank you ALL so very much..We spend hours on this website..learning, learning, learning!! It’s amazing!!!!
Hello Everyone,
I wanted to thank you all for your quick responses.WE are amazed and thrilled to have found this website and all of you!!! Thank you all VERY much! My husband is resting, and is on Dilautin and morphine(pill) for pain. He has no energy, and barely eats and has a problem hiccuping..which we were told to give antacid for.It only helps slightly. In the past 3 months he has lost aprox 55lbs as they were trying to find the problem!
Our problem here seems to be TIME!!!!!! The oncologist says we can start treatment Christmas week or the first of the year. We need a pt scan as the baseline for treatment. we only know he is stage 4 and in the lymph node in his liver ( or near) it. The port will be put in Monday..BUT we have to wait a week or 2 for the PT scan.. to start the chemo..MORE WAITING..Did I misunderstand that we have time.????? I don’t think so .WE are getting so frustrated because we wanna get going..The port is in Monday and now we have to wait for the PT scan to start????? The oncologist is making us wait..WE are trying to respect the oncologist and her office ( where they will administer the Chemo)..but we want to get going….She also said they are very busy…Truthfully we want to get to Dr Kato in Nyc..but are waiting!! Waiting, Waiting! Waiting,…we waited for Jefferson to release results of the biopsy to the oncologist and turns out it was just sitting on somebody’s desk for weeks..so it will be 2 months soon….more metastisizing???..More waiting…more time……..
I guess you can tell we are at our wits end……Please tell us your thoughts..
It’s friday night…so we want to start making A DEFINITIVE PLAN and that includes getting or consulting with Dr kato…but I’m sure he’ll need the pet scan as well…..Please let us now…Thank you all very much..The Austin Family and Friends..So sorry you had to find us. I was treated at NY Presbyterian several years ago with a resection done by Dr Tomoaki Kato, who was the only hepatic/biliary surgeon who would have taken me as a patient, due to a number of risk issues. I would suggest you get a treatment plan in place promptly, as time is not your friend here. I would also put convenience way down on the list of priorities, since there aren’t that many doctors/hospitals with significant CC experience, because of its rarity. I live on the Eastern Shore of MD, nowhere near NYC, but don’t regret my choice for a minute. Surgery (transplant or resection) are considered the only ‘cures’. I have nothing but good things to say about Dr Kato and NY Presbyterian, but you need to make your own choices. I have posted complete contact info for Dr Kato ( see the link under my signature). I don’t think you would be disappointed if you get an opinion from Dr Kato.
Hi Austin Family,
So sorry to hear about your husbands diagnosis. Coming to grips with this news, I’m sure, is devastating for you and your family. My husband was diagnosed with intrahaptic cc stage 1V 14 months ago (he is only 48). It took months for us to accept the news and settle down and work out a treatment plan. He was diagnosed by Dr. Cherque at NY presp in NYC and is being treated at a local cancer center near our home with input from the NYC team. It was important for us to stay close to home and we knew that the NYC doctors would consult with local team and provide the best possible care and treatment.
The first several months are a roller coaster of emotions and frustrations, sorrow, anger and bitterness but you will get through this and begin the fight against this horrendous cancer.
Stay strong! and check this website often as it will provide answers to many of your questions and much needed emotional support .
All my good wishes and prayers are coming your way …. P
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