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Posted 10/14/2012 8:39 PM (GMT 0)
Hello,

 Sorry it's been a while since my last post, but heres the most recent events. On Oct 1, Dennis saw the Radiologist, in less than a month the main tumor had gone from 2.2cm to over 4cm. The doctor said it had begun to grow aggressively and now it's urgent to get it treated. By Friday Oct 5 he was in the hospital for what was suposed to be an out patient procedure to a 5 day hospital stay. The main tumor was treated with microwave ablaition, he has three other things in his liver that look highly suspicious but to small at this point to confirm. The treatment itself went well, however in recovery his blood preasure got real high, then fever and herrendous pain and his oxygen level dropped. So the decided to keep him overnight for observation. By the next morning his bilirubin doubled, white count went up, platelets dropped, along with his white count going up. Then he started swellling up.They did chest xray's and CT scans said there was fluied but not that much. He got so constipated they ended up after trying everything oraly they could three enema's. He gained 16 pounds in the first three days. Did another CT scan still couldn't see fluid, His belly was so distended I thought it was going to pop. They said it was gas. He was on a clear liquid diet and still gaining wt. They couldn't figure out what exactly was going on. Dennis got somewhat stable and they sent him home, by then he was ready to come home. He said he would rather be miserable at home. So here we are. He came home on Tuesday fever went up to 101 and now he has the runs so bad he can barely make it to the bathrroom. He has some HE that is getting better since he went off the pain meds. Today his tempature is normal. And he's lost 17 pounds,now he can breath oxygen is up to 95-98%, still has the runs and it's bright yellow. He is very weak and tired sleeps almost around the clock. On Friday he had new labwork done, bilirubin has gone down some but his INR has gone up a little from 1.2 to 1.4, white count is coming down slightly. AFP went from a 520 to 364.

The good news is he got the MELD exception and went from a 12 to 22.

So grateful for this forum, because of all of you I was able to stay calm because I knew what was happening, he's progressing. I hate to see him suffering but at the same time it's getting him closer to transplant.

I welcome your input in fact I need it. I would have been here sooner but had to borrow a computor, I have to get mine fixed.

Love,

Barbara

 

Posted 10/14/2012 9:27 PM (GMT 0)
Barbara,
Glad that Dennis is home. What a scary thing! I hope that he will start to feeling better. I am sure Connie or ML or one of the others with more knowledge on this will be along soon.
Take care.
Emma
Posted 10/14/2012 10:14 PM (GMT 0)
Barbara, WOW! I've certainly never heard of anyone having a reaction like that. But then, I've never heard of microwave ablation. Are you sure it wasn't chemoembolization?

I'm glad that he is home now. Also that he got the extra points. If he doesn't get a liver by 3 mos. on the list, he will get another 3 points. That's what happened to me and I got my transplant the next day.

Tell Dennis to hang in there. He should be getting a new liver soon.

Hugs,
Connie
Posted 10/14/2012 10:34 PM (GMT 0)
Hi Barbara, Well you and Den have had a difficult week. One week of many in the countdown to transplant.

Great news that they popped his MELD score up to "almost your turn" status.

Once Mike got his points for his tumor, he got his turn quickly...I think just over a month.

In Mike's case, the tumor was smaller but they also recommended the ablation procedure if it started to grow quickly before a donor liver became available. His tumor was in a location not easily visualized by ultrasound, and they use the US to guide the probe to the right place(s). So, he counted on the quick time!

With the tumor growing so fast, Den had no choice really, but to go the ablation route.

I did some reading. Here is one article: http://radiology.rsna.org/content/251/3/933.full.pdf


Bottom line, they tracked a lot of patients, there WERE side effects, but there were low % ages for each side effect, and those were rarely fatal. Not too good for those who had them, but certainly were infrequent enough for patients to freely take the risk. If 25% of folks were dying from that treatment, well, that would net a different decision.

I'm glad his side effects seem to be resolving over time...that rapid wt gain and uncontrolled hypertension are very worrisome. And the fever...fever is not good.

Was this procedure done at his transplant center hospital by the interventional radiologists who work with the transplant team? I'm just curious because it seems that they struggled with controlling the side effects...more what you might see at a community hospital, not a major medical center.

I am really sorry this happend to Den...but our experience is that they are always tweaking the meds and symptoms to find a balance. Mike's kidneys start squeeking and they change the meds around and his blood pressure zooms up, etc etc.

This nonsense recently with Mike's rejection episode is classic...they increased his antirejection meds and his kidneys screamed at him! And then his prograf level went to 200% of the required level and they cut it way back. Of course they reacted without paying attention to the fact that he was effectively on a 3 day fast because of scheduling a colonoscopy for a Tuesday that they didn't give him until Thursday and the poor guy had nothing but jello for days! Maybe his varous counts would be off! That caused a 3 day hospital stay. We went down for a day procedure and stayed in town 4!

Good luck to you. Let us hear from you...can you pop into a library to check the site?

Carol
Posted 10/14/2012 11:57 PM (GMT 0)
Carol, thanks for your input. I couldn't find anything about ablation at that link, though.

Hugs,
Connie
Posted 10/15/2012 1:03 AM (GMT 0)
Thanks Emma,

Connie- Yes that is what it is Microwave Ablation, we were told this is what they use when the tumors are large. Because it works like a microwave it cooks from the inside out causing less damage to the healthy part of the liver. The origonal plan was RFA but the tumor got to big. They insert one or more probes right into the tumor guided by ultra sound a zap it.

Carol-Thank you for the link I'll check it out. Yes Dennis' ablation was done at his TP Center UCLA by an interventional radiologist. the reaction Dennis had is what he goes through everytime he has any kind of treatment where he is put out, only this time he had a doctor who listened to me instead of sending him home like whats happened in the past with his local Doctors. This was definatly the worst it's ever been but his liver is worse than it's ever been. I'm dreading Nov. 8th he has to have more bandings done and that is done locally.

I'm sorry Mike has had a setback I hope he's feeling better. Connie you've sure been going through it too. Dennis and I include all of you on here in our prayers.

What a journey

Barbara

Posted 10/15/2012 1:35 AM (GMT 0)
Wish they had microwave ablation available for my Mike... glad he is moved up... great news... sorry for what you have been through... prayin Sandia
Posted 10/15/2012 1:59 AM (GMT 0)
My first tumor was 12 x 11 cm. It took up the entire rt. lobe and had metastasized into the inferior vena cava. They used chemoembolization and also TheraSphere (microscopic beads of radiation, targeted to the tumor.) They went in through the groin for both of these and threaded the drug up into the tumor. The 2nd tumor, of the other lobe, although 4.9 cm at the time, was treated with chemoembolization to shrink it. By then I was being placed on the transplant list, where the cutoff is 5 cm. HCC is a very aggressive cancerous tumor that grows rapidly.

Here's hoping Dennis does better with the banding. Do you think he has a reaction to anesthesia? If so, remember to mention this to his radiologist beforehand.

Hugs,
Connie
Posted 11/9/2012 5:46 AM (GMT 0)
Hi Everyone,

Dennis had his banding's today everything went good. He also had a follow-up on Oct 29th, we left there stunned. Things aren't looking to good. Dennis had two more tumor's one is 1.8 cm they don't mention the size of the second one and he has about 10 nodule's that the doctor says are haboring cancerous cells. The plan is Chemoembolization. This is just on the right lobe, Doctor say there are things lighting up in the left as well but he wants to focus on the right first. Needless to say we are sitting on the edge of our seats waiting for insurance approval.
I have a question. With the cut off being 5cm is that the combined size of all the tumor's, including the one that has been ablaited? Connie with your tumor's being so large did they make an exception for you? I'm getting nervous that he's going to get taken off the list. He is rapidly progressing. AFP jumped another 120 on the 29th he was at 630 I don't know what he is now. He has a lot of pan now in his right side, he has a hard time getting a deep breath. I'm having a hard time tonight, so much head noise. I know you all can relate.

Splashdance so happy for Robert, that he got his liver. I just read all your posts.

I'm putting my computer in the shop on Monday, Apple is going to replace my hard drive I sure hope that solves my computer problems. I want to be be more engaged on here I just love this forum.

Goodnight
Posted 11/9/2012 6:15 AM (GMT 0)
It's good to hear from you, Den's Girl. The large tumor I had in the rt. lobe was shrunk enough that the part that was metastasized shrunk into the main tumor. But I was still left with a tumor too large to qualify for transplant. The TheraSphere treatment killed the tumor, but also my rt. lobe. So that lobe was surgically removed. I did well for 4 yrs. on the remaining left lobe, but then on my bi-annual MRI, a tumor was seen on the left lobe. At that point, the only remaining treatment was transplant.

I do believe that the combination of tumors cannot exceed 5 cm or close to that. Not positive, though. But it IS important that they shrink the tumors as much as possible.

Hugs,
Connie
Posted 11/9/2012 6:18 AM (GMT 0)
Barbara,

What a worry with all this news...I think the cut off is the 5 cm in total.  They aren't being mean about it, rather looking at as the best way to allocate organs. Those with tumors that cannot be controlled have less success after transplant, so they sort of act like GOD about it.

Mike's cancer markers are ticking up again and I am watching your case carefully. He is seeing a new oncologist in December...it was like this last time...the markers kept going up and no one was surprised when it showed up...so even after transplant, with the Hep C in there doing its evil deeds, HCC can recur.

I can see the UNOS point and success rates, but argument can certainly be made the the sickest person gets the liver first....but I don't make the rules.

Hopefully he will have the chemoembolization like Connie had and it will control the tumor situation until he gets a donor liver...or is well enough for a transplant.

David watched that TV special tonight that said many still die each day waiting for transplants. I can't understand why we don't have an opt OUT system rather than an OPT in system, where everyone was an organ donor, period end.  Unless there was something the matter with them. 

Thinking good thoughts for you both tonight. 

Carol

 

Posted 11/9/2012 6:39 AM (GMT 0)
Stay strong, Good luck Barbara
Posted 11/9/2012 5:55 PM (GMT 0)
The "opt out" idea is a good one, ML. But of course you'd have people complaining that their civil rights are being stomped on.

Hugs,
Connie
Posted 12/4/2012 5:20 AM (GMT 0)
Hi Everyone,

Heres a new update. On Nove 29th Dennis had the chemoembolization, he tolorated it pretty good. Yesterday however he said all of sudden he felt like he'd been hit by a mac truck. Running a low grade fever of 100.2. and he's looking a little more yellow. We are told this is all kind of normal after the chemo. I also had a long talk with IR about all the tumors and UNOS. He said that if the can prevent the tumors from reaching 2cm Dennis could have a 100 of them and they won't count against him so the plan is to watch him very closely. IR says he can do this treatment safely every 2 months. They were able to get the new large tumor along with three smaller one's. All the other one's under 1cm. TC as of today says he is still a TP candidate.

It's late good night all, love
Barbara
Posted 12/4/2012 5:56 AM (GMT 0)
I had that same experience with chemoembolization. My sister had come from SC to be with me, when she learned I had cancer. She stayed a couple of days and it wasn't until she had gone that the bad side effects hit me. They weren't terrible. Just no appetite and slept a lot. No energy. It didn't last long, though.

I'm glad that the IR is on top of Den's tumors.

Hugs,
Connie
Posted 12/4/2012 3:37 PM (GMT 0)
Thank you Connie

Hugs back to you
Barbara
Posted 1/5/2013 2:39 AM (GMT 0)
Hi Everyone,

We are on the edge of our seats again. We learned on Wednesday that Dennis' AFP has more than doubled since the chemo. It was 973 ng/ml on 11/30/12 on 12/27/12 it went up to 1963 ng/ml, and his alkaline phosphatase is also going up. Doctor said this could possibly be one of the tumor's is growing over the billilary track and causing a blockage. Actually all his hepatic function panelnuumbers are going up up up except the ALT. Dennis is having another MRI on Monday morning so we will know what is going on.

We went to our support group on Wednesday when I shared what is happening the Social Worker's and the TC just kept saying how sorry they were. So of course my head is running with me.

I've drempt twice now that Dennis' TC called to inform him that was no longer a candidate. Thank God I was just having a nightmare.

My computor is back in the shop again we are all taking turns on the laptop. I'll update on Monday. Please keep my husband in your prayers.

Love,

Barbara

Posted 1/5/2013 3:29 AM (GMT 0)
Barbara, you all certainly have my prayers. From my own experience, I'd say that the tumors (or one of them) are/is growing substantially. Just remember that it can be shrunk.

Hugs,
Connie
Posted 1/5/2013 3:33 AM (GMT 0)
Barbara,
Keeping you and your hubby in my prayers.
Emma
Posted 1/8/2013 7:11 AM (GMT 0)
Hi Everyone,

Dennis saw his IR today, we were told he can no longer treat Dennis' cancer because of the fear of sending him into liver failure. It's just not safe anymore. He has more than 10 tumors so far. Because they squeezed Dennis in this morning the offical report wasn't ready so we don't know the exact measurements of the tumors yet. Even if just a couple of them are past 1CM Dennis will no longer be a candidate for transplant. As of this moment he is still listed and on the 10th his MELD score goes to 25. But as I've told you before we live in California, blood type is A pos. We have two small children, I just don't see it being an option for us to move to another state.

At this point what the plan is, to see the oncologist to see if Dennis is a candidate for an oral medication (can't remember the name) that is suposed to keep the tumors from growing and even if Dennis becomes disqualified for transplant it suposed to prolong life. Needless to say my head is whirling tonight.

Think I'm going to try to sleep

Barbara cry

Posted 1/8/2013 2:53 PM (GMT 0)
 Oh Barbra , I'm so sorry about this news . My friends wife had cancer removed about a year ago but she has constantly gotten monitored for it's return since then , I feel so awful seeing her beautiful enthusiasm being crushed by bad test results . Her tasting from 3 months ago showed the cancer may be returning so she got tested again yesterday , She's scared and I know that feeling a bit too well . We laughed and joked all through the day yesterday while at the hospital ( Her for the cancer , Me for the cirrhosis ) in between our separate appointment schedules .

 She and her husband are in there mid 70s and both have had there share of illnesses but they keep on keeping on . I wonder at times if we have a purpose in life , Surely all this grief and sorrow can't be all for naught . And then , It hits me , A moment of seeing a example like my dear friends ( On here and in my personal life ) who show the courage and determination to strive beyond what most would give into quietly . Examples of humanity that are rare these days and only to be truly appreciated by those lucky enough to be caught up in the moment with them . It's no consolation to ease your troubled mind , But believe me if there is a since of feeling " blessed " it has been given to you . Live life to it's fullest with a refreshed zest every waking moment , Play with your children together , Hold hands and smile .

 These problems you face are like a business and though they may effect a large portion of your life you don't have to take them home with you . " Home is where the heart is " . Shrug this business off for a moment and don't take it home . My best to you and Dennis .

A. Ziffle       

Posted 1/8/2013 3:10 PM (GMT 0)
Barbara,

I agree with Ziff...

Each of us is on the same path...we live and then... but we need to carry on as posively as possible while we have breath left.

Love each other. That's my advice.

I took my 65 year old sister to the Alzheimer's doc yesterday -- first visit. Diagnosis is not firm, and whatever is going on is in the early stages. But now, while she is still pretty good, we can make plans, stop pretending this isn't happening, we can face it and be glad for each day.

I am hoping the next weeks, months, years are peaceful ones for you, Dennis and the family.

Us too.

Hugs,

Carol
Posted 1/8/2013 6:53 PM (GMT 0)
Good Morning Ziff and Carol,

Thank you for your encouraging words. We are doing better today. I made Dennis' appointment it's next Wednesday. I've talked to most of our grown kids and we all agree we are going to nuture every moment as best we can. We both have talked to our sponsor's and shared at our home group. We were both reflecting the other day that it was Dennis' hep-c diagnosis that got us serious about recovery and we have had 14+ good years. If we wouldn't have found recovery we would probably be both be dead by now. We were really out there running a muck.

Today he is still listed and I know a lot can happen, so I'm kind of hoping that his liver will stop working as good as it is and get that MELD score up. It ain't over till it's over and as long as there is breath there is HOPE. Thank you for the blessing A. Ziffle, I do feel very blessed and even more so because I have a strong network and people like you and others on here in my life.

No matter what happens God never lets go of us.

 

Posted 1/8/2013 9:44 PM (GMT 0)
Barbara, I'm very disheartened to hear this news. So basically, the reason they're saying he is no longer eligible for transplant is because they can't safely continue to do chemoembolization or other treatments on the tumors, so they are going to grow too large to qualify? But for the moment he is still okay for transplant? I was transplanted with a MELD of 25 at Mayo FL, so it's a shame you happen to be in CA. Even if you were here, though, they would likely want to do all the scans and testing over again.

We are fortunate to follow a program that gives us tools for coping and people that will lift us up, and best of all a conscious connection with a Higher Power so we are never alone, and can just turn it all over when life's travails become too much for us to handle.

Praying for a miracle.

Hugs,
Connie
Posted 1/13/2013 1:21 AM (GMT 0)
Hi Everyone,

We received my husbands reports in the mail so I thought I'd share the with you.

 Labs...WBC 5.83, HGB13.7, Platelets 74, INR1.2, Total Bili 2.9, ALK Phos 205, AST 99, ALT 43, Alb 3.5, AFP 1940.0

IR Examination...Mildly juandiced, 2+ pitting endema to ankles bilaterally, no clubbing or cyanosis, 2+ pedal pulses bilaterally.

Imaging... MRI of the abdomen demonstrats multifocal patchy enhancement likely consistent with multifocal HCC. There is enhancement adjacent to the ablation defect suspicious for tumor recurrence. 

Impression and plan... This patient is a very pleasent 56 year old male with a history of hep-c, cirrhosis, hepatocellular carcinoma who is status post RFA and TACE. The MRI demonstrates multifocal recurrence, with multiple small nodules of suspected tumor within the liver. He discussed with us these finding in great detail. Due to patients current liver function he is NOT a candidate for further locoregional treatment at this time. The option of Nexavar was discussed and will discuss with Oncologist. IF liver function improves, we can readdress the possibly of futher locoregional treatment, which could include raduoembolization given the poor response to TACE and RFA.

The MRI Findings... The segment 5 ablation defect is similar to the prior study excet that there are patchy areas of arterial phase enhancement at its posterior superior aspect the 1.8 cm segment V/VI lesion previously measuring 1.8 cm now measures 1.4 cm but does not have clearly have washout or delayed pseudocapsule. However, one additional area which are hypervascular have portal venous washout and suggestion of pseudocapsule including segment VI/VII measuring 1.9 cm and segment II measuring 1.7 cm and 0.6 cm on the same image. Two foci with suggestion of peripheral arterial enhancement in the caudate lobe measure maximally 1.7 cm and are slightly larger but do not have definite pseudocapsule on delayed imaging.

The liver remain cirrhotic in morphology. The portal vein is patent. An accessory left hepatic artery appears to arise from the left gastric. Spleen remains enlarged. No gastroesophageal mucosal varices are clearly suggested but artifact may limit sensitivity. Trace fluids surrounds the liver. Gallbladder wall is thickened without calculi. A puncate fluid signal intensity focus in the pancreatic uncinate process consistant with IPMN is stable.

Impression:

1. Small Amount of periablation suspicious arterial enhancement

2. Additional liver lesions are more conspicuous and are classified as classified as OPTN 5a or OPTN 4g.

3. Cirrhosis with portal hypertension. Gallbladder wall thickening may reflect diffuse lever disease.

He sees his Oncologist on Wednesday to see if he is a candidate for that medication.

Needless to say my heart is breaking. I hate waiting, Wednesday is a long ways away. I don't know if they can shrink these tumors if not the combined measurement is beyond 5cm.

I'll update you all on Wednesday thank you for being here.

 

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