Wife Diagnosed with Intrahaptic CC

Discussion Board Forums Introductions! Wife Diagnosed with Intrahaptic CC

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #83698
    lainy
    Spectator

    Mitch, the only one I know of with CC experience is H. Moffitt Cancer Center in Tampa FL. Oh, also Methodist Hospital in Houston. I don’t know how far you are willing to drive but Barnes in St. Louis is also excellent. Most of the others who excel with CC are upper half of USA. On our HOME page is a Category of Hospitals and/or we have a Research engine at the top of the page. Just type in a couple of words like Louisiana Hospital and see if any posts pop up. There are a lot of Hospitals in the East and West upper Middle but not that many in your area. Hang in here and lets see what others have to say as the day goes along.
    P.S. No matter where you go you will need Disc’s of all LABS and procedures so that is something you can start to work on so you will be ready.

    #83697
    mjm504
    Spectator

    Lainy, thanks again. Yes we drove to MDA and we are open to another opinion. Can anyone recommend another hospital within reasonable driving distance?

    #83696
    lainy
    Spectator

    Mitch, the only thing I can come up with is one more opinion. I don’t know where Robin is being treated and I do know that MDA is one of the best but sometimes that 3rd or 4th opinion can change the game. I am guessing she cannot travel too far or by plane with the other health issues and that perhaps you drove to MDA? If you feel you want to get that 3rd/4th opinion then we can throw the question out here of what others know about a Hospital that has treated CC nearer to New Orleans. We do have members here who were told the worst news and then went for other opinions and are doing fine. BTW my daughter’s name is Robin.

    #83695
    mjm504
    Spectator

    Thanks for the welcome Lainy. Robin is 54 years old. I have been reading this website and discussion board since late April and it is definitely the best place for information. Robin’s underlying health issues, high blood pressure and obesity, are a contributing factor to all of the reactions to the procedures. Again any advise would be of help.

    #83694
    lainy
    Spectator

    Dear Mitch, you both have really taken a horrible ride on the roller coaster and honestly I am at a loss since everything has caused big health problems for Robin. May I ask how old Robin is? The best I can say for right now is to hang in here a bit and let’s see what other Members here have to answer. All I can say is this is the best place to be for CC support and don’t apologize for long posts as it is very cathartic to write it all out. Please keep us posted as we truly care and I know you will get more responses today.

    #10319
    mjm504
    Spectator

    On April 14, 2014 it was discovered that my wife Robin had cancerous tumors on her liver. This was discovered during a laparoscopic procedure for the gastric sleeve. The procedure was aborted and we were informed that the life changing event was not the one we had hoped for. Within five days we had seen two oncologists, had a CT scan, a EUS and a positive diagnosis of Intrahepatic CC, with one 6.5 cm tumor on the left lobe and numerous small tumors scattered about both lobes. We were sent for surgical consultation. He determined that due to size and location of main tumor, the involvement of both lobes, the involvement of lymph nodes and the amount of liver affected by fatty liver that surgery was not an option. We were than referred to a radiologist for a possible TACE procedure on the main tumor. Again that was ruled out for the same reasons. She then began a Gem/Cis chemo regiment of 2 weeks on and one off. This began on May, 2, 2014.

    The first cycle was uneventful with the exception of mild mucosities after the second treatment that lasted about five days. Second cycle went well, but started getting very tired leading up to start of third cycle. Blood work on 8th day of 3rd cycle showed low red blood cell counts. Received chemo, but was sent for two units of blood the same day. Blood transfusion worked and she returned to normal. 4th cycle started with RBC numbers still low, received chemo but ordered IV fluids before next treatment. Cycle 4 day 8 received chemo RBC still low, two more units blood the following day. Scheduled for CT scan one week after last Chemo. Was very weak, dizzy and the mucosities start again during off week. By the time we went for the scan she was too weak to walk. After scan we went to oncology office they drew blood right away. Was sent to hospital right away with low RBC and creatinine of 1.7 and BUN of 81! Admitted and immediately started another two units of blood, and IV fluids to try to hydrate kidneys, But the scariest part was when I saw her weight, she had gained 50 lbs. in two weeks!! This was all fluids, so she was dehydrated and full of fluid. Her kidney numbers got worse and they were concerned that she would be put on dialysis. Within five days her kidney numbers were stable but the fluid was worse and she was having trouble breathing. Sent to the ICU at night because she was struggling to breathe. ICU three days stable, sent to a step down ICU for another 15 days to remove fluids. Was sent home on 4 liters O2, back in ER within 48 hours not able to breathe and BP very high. Readmitted to hospital, she still had bad pulmonary edema and they were concerned about congestive heart failure. She was released after a total of 28 days in hospital. Slowly returning to normal, whatever that is at this time.

    Local oncologist reports that the CT scan taken before hospital stay shows a stable cancer, but due to her kidney function, blood issues and the pulmonary edema, he doesn’t think it safe to resume chemo. We decided to get a referral to MD Anderson for another opinion. On 9/10/14 we had an appointment with Doctor Rachna Shroff at MDA in Houston. We met with Dr. Shroff and her staff who reviewed all medical records and prior CT scans. She explained that Robin would never be a candidate for surgery, radiation or any type of embolism because of the cancer location and spread, also she does not believe that she is healthy enough to handle these procedures. Her recommendation was to start a “maintenance” dose of Gemcitabine only, 600 mg/m2 IV given over 60 minutes every other week. There hope is to keep the cancer stable. Later that day Robin was scheduled for a baseline CT scan. About 20 minutes into the procedure one of the techs came and got me saying that Robin was having a reaction to the contrast. When I got to her she was already on a gurney surrounded by two doctors and several nurses. She could barely breathe and was coughing non-stop. She was brought to ER and it took about 30 minutes to get her stable. The ER doc came in and said that she was clear from the contrast reaction, but that she had a “flash pulmonary edema” and that her lungs that were clear on the CT scan, were now 1hour later, full of fluid. They started her on diuretics to remove the fluid. The next morning the cardiologist reviewed her blood enzymes and believed she had suffered a heart attack during the reaction. They performed an angiogram which revealed no heart issues. She remained in hospital for three days while they removed the fluids with diuretics. Dr. Shroff was now concerned about even the low dose gemcitabine, but in the end she agreed to this recommendation as long as the onc at home agreed that the first sign of problems the chemo would stop. We scheduled a return visit to MDA in December.

    Does anyone have any advice on how we should proceed? It does not seem like the low dose of gem alone would be effective and they don’t have anything else to offer as far as treatment.

    Sorry about the long post, but sometimes it helps just to write it down. She has been through so much in the last 150 days, with no cancer symptoms. Please let me know if you have any ideas for additional treatment.

    Thanks
    Mitch

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