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  • #55765
    lainy
    Participant

    I take this as some pretty good news, Janet. Enjoy the Spring, a time for new beginnings! Sarna is really great, we used that for Teddy. Also a wipe down with a cool towel helps a little. In fact before Teddy’s Whipple he was itching so bad he used to use ice bags. I believe the treatment goes on working for a while so maybe Pete can get that 40% to a higher level. In the meantime relish the honeymoon!

    #55764
    janetinfl
    Member

    Pete had his MRI yesterday to see if the radio embolization had worked. The good news is that it looks like 40% of the big tumor is dead. The radio active beads are active for another 6 weeks. So he has another MRI in about 2 months to see if any more of the tumor is destroyed. This is all good news.

    But since the radio embolization Pete has been itching a lot especially at night. The doctor also said Pete looks a little yellow. The doctor isn’t sure whether to procedure is causing other ducts to be clogged or whether the cancer has spread into the ducts. I have the impression they will know more after the next MRI. The doctor prescribed some medicine for the itching to take only at night and I also bought him some Sarna.

    In addition that B-test to test the liver functions has rising to 1.5. And his kidney funtions haven’t improved. The doctor said Pete would most likely not have anymore chemo in the future because of the kidney funtions, but he did say the oncologist would make that decision.

    The doctor did say that Pete could have another radio embolization in the future.

    So in conclusion I am really happy that my husband is feeling soooooooooooo much better. It is Spring here in Florida and the weather is awesome to sit out on the porch. We are enjoying each day. I know the cancer has shrunk, but some of the tests aren’t that great. But to look at him one doesn’t know that. He just looks and acts so much better.

    I hope that others that have radio embolizations will post the results of their procedures. Maybe I should have posted this as a new post.

    #55763
    pcl1029
    Member

    Hi,

    Below is a portion of an article about chemoembolization and I am quite sure both chemoembolization and radioembolization are used for large tumors rather than tumors smaller than 3-5cm, in that small size RFA can be used effectively.
    As the below indicated.

    PERSONAL EXPERIENCE

    We have been performing chemoembolization for appropriate patients at our institution since 1988 (Fig. 9⇓). Patients are carefully selected to include those most likely to benefit. These are generally patients with liver-predominant disease and with symptomatic or rapidly growing tumors. They must have focal rather than diffusely infiltrative tumors. Those with fewer than three lesions, <6 cm each, generally are treated preferentially with radiofrequency ablation, if the location of the tumors makes this technically feasible. Rarely, this may be combined with chemoembolization to improve radiographic results. Any potentially resectable lesions are treated with surgery. If the patient understands the risks, has a good performance status (0 or 1 by Eastern Cooperative Oncology Group criteria), has a patent portal vein, and has a total bilirubin level ≤3.0 mg/dl, albumin level ≥2.8 g/dl, and creatinine level ≤2.0 mg/dl, then chemoembolization is recommended.
    God bless.

    #55762
    lainy
    Participant

    Dear Janet, I just don’t know enough about the Chemo as Teddy had radiation then Cyber Knife. The tumor must be under 7CM and his was was not. So they brought it down to 5CM and zapped the sucker with C.K. Your wait and see mode is one of the worst modes to have to be in. I am sure other will post hereand hopefully have some ideas for you. Be strong!

    #55761
    janetinfl
    Member

    I haven’t posted for a while because my husband hasn’t had any chemo for 6 weeks. The doctors are hoping his kidney funtions would improve. His kidney funtions didn’t improve. Last Thursday he had chemoembolization to attack the smaller tumor. They also did the test to see if he is a candidate for radioembolization.

    During the test the doctors put a contrast in the artery. This is what is harmful to the kidneys. I was told to give him some medicine that he was to drink the day before the procedure. This was to protect his kidneys.

    I called the Mayo so find out the results of the test. I was told there was some leakage to the lungs, and the doctors needed more time to study the results.

    We were told that if Pete passes the test and can have radioembolization, he can’t have the Theraspere because of his kidneys. They said they would use an “off the shelf” radio-active beads that are made in Australia.

    According to what I have read on this forum chemoembolization can’t be used on large tumors. Pete has 2 tumors. One of small and located near the border of the 2 lobes of the liver. The other is 8 to 9 c. and looks like a spider. If he can’t have radioembolizatio to attack the large tumor, I wonder what the doctors could try next.

    So far Pete is feeling really good after the chemoembolization. He is doing a lot better now that he isn’t on chemo.

    We were finally told Pete’s cancer is stage 4 intrahepatic cc. I was surprised by this because the cancer is all contained within the liver. But the doctors said he is in the portal vein, the liver and in the blood vessels. So it has metasticized.

    So he has a lot going against him. Cirossis of the liver, poor kidney funtions, and sage 4 cancer. At this point in time, he is back to his old self. One wouldn’t know he is sick. He really was sick with the chemo. I now understand why “one must take this one day at a time”.

    #55760
    pcl1029
    Member

    Hi,
    Below is my suggestions when your husband will have radioembo.
    There is a questions you should ask Dr.Sella at the APPROPRIATE
    time:
    when Dr. Sella ask you any questions about the procedure?
    You should show your concern about the “test run” and say ” Doctor Sella, I am worry about the possibility of the leaking of the Y90 to other parts of the body,doc. please try your best to help my husband” .In that way you remind him you know a bit about the procedure and he will say.”don’t worry,we will try our best or we do this a lot but yes ,I will make sure your husband is Ok.”— this is a nice way to remind him during the procedure to pay attention at that point of treatment. Say it nicely to him with a look of a knowledgeable but worry wife and it will help too.

    Be sure to eat a lot and gain weight
    God bless

    #55759
    janetinfl
    Member

    I called Dr Sella’s nurse yesterday about an appointment for Pete’s embolization. She told me that the oncologist and Dr. Sella wanted to give Pete a couple of weeks break before the procedure.

    Just before X-mas Pete was given the regular gem-sis infusion since he was taken off the trial because of low platlets happening 2 times. Pete didn’t tolerate that cocktail at all. He was the worst I had ever seen him. So I think they want Pete to take a break and be stronger to withstand the embolization.

    So it will be a week or two before we make the trip to the Mayo. At that time I will ask for the results of his MRI.

    Meanwhile he is eating much better. He even looks better. I am learning to take all of this one day at a time. Dr. Sella had told us he hoped this procedure would make Pete more comfortable. I know it isn’t a cure. We are just hoping for more time.

    I really appreciate this forum. I have learned from many of you of how to treat constipation. I have also learned of how tired all these treatments can make a person. In other words I learn what to expect so that I can keep my sanity. It is so hard to watch a person fight this battle. I am the type of person that can’t watch people hurting. My personal lesson in all of this is to become a stronger person so that I can be there for my best friend, my hubby.

    Meanwhile I spend some time every day on this forum. It hope with experience I can help others with what I learn. Thank you so much for all of you that post. You don’t know how much it helps those that are still in the learning process. Thank you Thank you Thankyou. I can’t say it enough.

    #55733
    marions
    Moderator

    Thanks so much, Margaret….this is a good discussion for our “Insurance” thread. Would you mind resposting it there?
    Hopefully someone else can help us work with the unanswered questions.
    Oh yes, the sleepless nights – I so much understand. Please, take care of yourself.
    Thanks again,
    Marion

    #55731
    pcl1029
    Member

    Hi, Janet,

    I will ask for the results of the MRI at our next appointment.

    My husband has really been sick on the chemo he has been given. I am hoping the radioembolization won’t be as toxic for him. It has been 3 weeks since he had chemo, and he still has no energy, but he is eating better. “

    Nothing you really can do till the MRI comes out , and as before,if you like you can send me via e mail for more privacy or put it on the web. either way is fine.

    Tell your husband as I always remind myself; when ,as a patient start to feel better and has a bit more energy; then this is the time try to help ourslves to restore our health by drinking a lot of fluids to keep hydrated;(juice,soup,milk, ensure,carnation breakfast drinks and water) at 6-8 glass of 8oz glass a day,take a multiple- vitamin daily; and try to eat well and eat often; , fish,vegetable, lean pork,soy bean products and or other protein product (2000-2400cal/day depends on how much you weight) to help you gain weight and provide a better environment for the patient to endure the next treatment with less problems;(Always be prepare for the next step .)
    At this point,Janet, chemoembo or radioembo may be the best choices and I think you should concentrate your energy on this current direction and see what dr.Seller? will do at the next appointment. I think resection and liver transplant may not be the course treatment for now until otherwise indicated.
    godd luck
    God bless.

    #55732
    mlepp0416
    Participant

    Marions: Since Medicare is a ‘Federal’ program I’m pretty certain that what is the norm in one state would be the norm in any other state in the U.S. as we are all under one Federal Government. Right?

    In Tom’s case, my son was willing to be a live donor and so was Tom’s son for a liver transplant as they can use only a small section of the liver. As to whether or not a persons medical insurance would cover that type of transplant, it would depend upon the policy. Most medical insurance’s do have some type of ‘transplant protocol’ written into their policies. I know for certain that all Fully Insured policies do, and for ASO (Self Funded) policies, it is up to the individual company that is paying the claims for the ASO plan.

    Medicare ? I don’t work for Medicare so I don’t know what rules they have or what they will or will not cover. I do have a Medicare booklet here as we were just in the process of getting Tom signed up for Medicare when he passed. I’ll have to take a look and see what it states regarding transplants! Not right now though as it is 3:32 am (I can’t sleep) Imagine that eh?

    I do know that when Tom first presented with CC we did discuss the transplant option. Given his other medical conditions, they really played down a transplant, even with a live donor option BECAUSE CC can come back even with a new liver and stats show that a transplant may not change the outcome. Even Mayo clinic Stats show that. I was amazed when I read that one!

    Margaret

    #55758
    lainy
    Participant

    Dear Janet, we will be watching with great interest all the news on your husband and his planned treatment. I am sure a vacation from Doctors sounds just great to you about now. One of the most important things is that you feel secure where you are and that is a GOOD thing. Looking forward to more updates from you!

    #55757
    janetinfl
    Member

    I will ask for the results of the MRI at our next appointment.

    My husband has really been sick on the chemo he has been given. I am hoping the radioembolization won’t be as toxic for him. It has been 3 weeks since he had chemo, and he still has no energy, but he is eating better.

    I can understand why transplants aren’t given to people over 65. First there aren’t enough organs for people that need them, and they should go to people who are younger and still have lots of life ahead of them.

    From what I read about this radioembolization is that it does extend life. I imagine that is all we can hope for right now.

    The doctor that will do the precedure is Dr. Sella at the Mayo in Jacksonville. We have already had a consult with him. We should get a call Monday for the next 2 appointments. We were impressed with him.

    Our son married a girl whose father is a retired doctor from the Mayo. He is a great help in steering us in the right direction. We also have a teacher friend whose wife is a nurse for the doctors that do resections at the Mayo. She highly recommends 2 doctors that do resections. That is if Pete is ever a candidate for that precedure. I imagine it will all depend on how much they can shrink the 2 tumors and how much they can cut out of a cirrotic liver. The oncologist gave us that hope.

    We haven’t thought about second opinions because I don’t think we can do much better than the Mayo here in Florida. I have no complaints about the Mayo. People are great there and they take all the time one needs to talk and ask questions. I wish all hospitals were ran like the Mayo. This is our first time using the Mayo and again we are really impressed by the service.

    #55756
    marions
    Moderator

    Margaret…I know that Medicare does not cover transplantations in some States however, I don’t know whether that is true for all US States. I know for sure that it is not covered in the State of Texas.
    Also life donor? What are the rulings? Does Medicare cover it? I know that some insurances do.
    My friends, recipient over sixty five – donor – sixty two – had been covered with Kaiser Permanente for a donor kidney transplant. Another friend received her brother’s kidney and it was also covered by Kaiser. (She is a Kaiser member – he is not.)
    It would be great to have this information listed on our site.
    All my best wishes,
    Marion

    #55755
    mlepp0416
    Participant

    Welcome to the site, and to your new CC family. I have just recently learned that people over the age of 65 cannot have transplants, even Kidney transplants. I have a brother in law who is 71 and his wife had a kidney transplant at age 61. Long and short of it is if you are over 65 apparently any transplant is out.

    Keep in mind also that no one has an expiration date stamped on their butt. My husband Tom was given less that 6 months after he had a ‘successful’ resection. But 18 months later he started turning yellow, and they found a new tumor that involved the hepatic artery. The reason it is inoperable is that if they ‘nick’ the hepatic artery, you will die on the table. They were able to ‘kill’ Tom’s tumor with radiation. He did have to have an external drain tube because they could not get an internal stent in. And they tried, numerous times here in Green Bay, Wi. And they tried twice at Mayo Clinic in Rochester Mn.

    He then started oral chemo Xleoda which he tolerated very well. After a radiologist misread a scan, and ‘thought’ the cancer had spread, they installed a port and started him on Gemzar/Cisplatin which he also tolerated very well. To make a long story short about 2 months ago, I could see that he was going downhill and his urine output was not what it should have been. I took him in, he spent 3 1/2 days in the hospital, came home and started on Hospice, and 3 days later he passed away. This was ALMOST 2 years to the day when his then oncologist told him that there was nothing else they could do and that he had less than 6 months. Well, we got another two years and we made the most of every day of those two years.

    Go with God and hang in there. I know full well what you are talking about, I too had to stay strong for Tom, I was his strength when he was weak, I was his happy when he was sad. I was his caretaker, his wife, his everything, as he was mine. I did the very best I could and promised that I would take care of him until the end and that he would be at home with me, which is what he wanted.

    Live each day taking it one day, one hour, one minute, one second if you have to. Don’t be afraid to do the research, don’t be afraid to ask questions. Get a digital tape recorder and take it along with you for meetings with doctors. You can then re listen to it and you will be amazed and the questions that will come to mind. Write down those questions and persent them to your husbands doctors, they are WORKING for you!

    Hugs,
    Margaret

    #55754
    pcl1029
    Member

    Hi,
    Below is some info I reply to other members about radioemo;you can take a look.
    if you have more questions, like others,you can email me the MRI and cat scan “impression” section to me to see whether I can be of further help for you in suggestion for radioembo.

    PCL1029 wrote:
    Hi,

    It is a potential good approach for intrahepatic tumor for recurrence too big for RFA and after unsuccessful treatment of TACE.

    The side effects that I research on radioembo with Y90 is comparable to chemoembo with cisplatin and Adriamycin+mitomycin.

    Its effectiveness also base on the size , number and location of the tumors and the patients’ health status;
    Fatigue (40-50%) is the major side effect;nausea is second but it may only last for a week or so.The treatment is divided into 2 days.

    1st day is for the assessment of whether you can qualify for the radioembo Tx;MRI/PET/Cat will be performed at the hospital;Lab work will also be done (patients need to fast,not to eat anything the nite before) ; calculation of the radioactive Y90 dose will be done to maximize the benefit of the deliverty of the Y90.;a test run of the radioactive treatment will be done to make sure the Y90 go to the right places in stead of the stomach,lung or the intestine which will become a serious health concern.( all of these can take the whole day to do.)

    In the 2nd day ,the patient will have an angiography and the procedure will be performed by interventional radiologist in a couple hours.and after observation for another couple hours in the hospital,if all goes well,patient can go home and will be seen by the doctor in a week or a month for follow up asessment.

    In my personal opinion, as well as recommended by my 2nd opinion doctor recently, I will try radioembo with Y90 done by an EXPERIENCED interventional radiologist.(this is almost a MUST ) when the need arise;since many hospitals are now trying to have this option available to patients but most if not all,lacking the experienced radiologist to do it.
    According to my knowledge, Northwestern university intervention radiology dept. in Chicago is best known for this treatment and research. Dr. Raid Salem and his team is recommended to me by my consulting doctor too.

    a very general reference may be of help as follows;but I am sure you have already done your research.
    http://www.omicsonline.org/2155-9619/2155-9619-2-110.php
    God bless.

    Radioembo is the new kids on the block that received a lot of attention lately.
    God bless.

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