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Medical Forum / Diseases and Disorders / Cancer / November 2003Fibrolamellar Update
J Thank you so much for the link to this site. They all look familiar to me as I am pretty sure I have been to this one already and to almost everyone of them including pubmed. Rudy is doing so good. I don't want to question it, but I have to think that the pharmaceutical grade anti-oxidant supplements are really helping him through all this. I think everything is working very nicely together. I finally had a good sleep last night. This has been very exciting news for the both of us!! There were signs of necrosis after the 2nd chemo and now the tumor is apparently dead inside after the 4th treatment. He has 2 more to go. One often wonders if the drug is actually working, but I guess it does quite nicely. What I don't understand is this: Does this mean the tumor will shrink and disappear? Does it mean no more malignant cancer (for now) I know there is a possiblity that it could still rear it's ugly head...I am not in denial. Does this mean it will turn to proverbial dust and he can poop it out? Could it still stay the same size and still have pressure on the main portal vein?? I know Rudy is not too keen on having surgery, but if they thought it was safe enough to do, and they "had" to do it, he would have the surgery. Oh my gosh, more questions to research here...I didn't think that there was anymore I could look up. Thank milllions J. I was so excited, I wanted to let you know! Hugs, Jenny "J" <WoodHills@inv.invalid> wrote in message news:3FA41FFC.DC40FEB0@execulink.com... > Dash wrote: > > > I thought I would write you a note to tell you that Rudy had his 4th round > > of chemo-embolization yesterday. He felt a little weak at first, but now he > > feels great! > > > > I told him he should ask the radiologist some questions while he was there, > > but he told me there is never time for quesions & answers. Anyways, this > > time he found the time and asked if there was anything he could see on the > > screen. The radiologist said that yes, the 11cm X 12cm X 13cm tumor on his > > liver was now "dead" inside. He said that this was a good sign, and that > > they are heading in the right direction with this treatment/procedure. We > > are not sure if the tumor is still the same size, or if this means that > > there is no longer any cancer or what???? All he was told was that this is > > good news. I didn't think the radiologist was suppose to give out this > > information........but this is good! > > Jenny > > Hi Jenny, > This is great news, thank you so much for announcing it. > I think, in your earlier post (Fibrolamellar Hepatocellular Carcinoma) > inserting it, so anyone later might find this thread in the newsgroup > archives..you mentioned necrosis. > > I found this website that show's scan pictures (before and after), remember > though that it is not your husband's liver/tumour, so the position may change > but it gives an idea what they might be seeing. > > They also mention a subsequent liver resection. I don't know if that's the > plan (or not) in your husband's situation. > I have no idea what they do with a necrotized tumour and/or if another option > is leaving it there and watchful waiting after the treatments have ended or > followup with adjuvant chemo or what.. Perhaps some things to ask later? > > http://www.livercancer.com/treatments/chemoembolization.html (PS this web site > is probably not on the FAQ recommended links list, but I found it, so FWIW > ..for what it's worth) > > I'm so glad he's not having too many negative side effects. Two more treatments > to go, right? > Keep the good news coming. > All my best and hugs Jenny, > J > Thank you so much for the link to this site. They all look familiar to me as > I am pretty sure I have been to this one already and to almost everyone of [quoted text clipped - 19 lines] > Thank milllions J. > I was so excited, I wanted to let you know! Hi Jenny, I meant to reply this morning but I got offtrack. I think a lot of these questions are best asked of his doctor, unless Steph has something to add here. I think they want it softer or not growing so it doesn't put pressure on the portal but since it's encapsulated, for the moment none of it's going anywhere, and actually that picture seemed to imply that the remainder of the liver had grown or hypertrophied. So it kind of looks like the liver grows to make up for the non-functional space that the tumor is occupying. I wondered if that makes a person's abdomen bigger? and cause pressure and bloating? What I found is another web site http://www.bluefaery.org/cancer/treatment.shtml (again one I"ve not seen before) Chemoembolization: Both chemotherapy and colloid particles are administered into the liver tumor through the hepatic artery. This procedure is usually beneficial in patients that have tumors limited to the liver. Chemoembolization can also be used to decrease the size of tumors to allow for resection. [] I guess once dead, cells (cancerous or other) eventually get reabsorbed by the body and eventually get "pooped out" but I'd be wondering if they plan on removing what's left esp if it's encapsulated. So make a list of questions for him to ask his doctor. Speaking of cells, are you sure antioxidants are a good idea? When I think about that, I think of an aid to deliver better oxygenation to cells (cancerous or other), so wouldn't that help cancer cells grow? Perhaps something else to check with his doctor? Anyhow, I'm glad you slept good last night. Do try not to wear yourself out again with researching. I'm sorry, I've only got more questons for you and look forward to hearing back any answers, as you or he can get them. All my best, hugs J > Speaking of cells, are you sure antioxidants are a good idea? When I think > about that, I think of an aid to deliver better oxygenation to cells (cancerous > or other), so wouldn't that help cancer cells grow? Pardon me, antioxidants are discussed here (in foods) http://www.cancersupporters.com/asc/part1.html J Thanks again for the information...hmmm, this website I haven't seen yet, surprise, surprise! The problem J is that we don't have a Doctor per se. He never ever had to go to a doctor for anything before this little incident with the pneumonia etc. Healthy as a horse. We are from BC and he ended up with an oncologist from BC, but he wanted to go to the city to have this biopsied since they refused to do it in our local Regional Hospital....something to do with how it should be done and to go into the liver 1st and then the tumor. We felt that going to the city, there they would have more experience with this sort of thing since it was located on the liver. It was a catch 22, so we opted for the city doctor. The city we chose was Edmonton (where Rudy's mom lives) and the Oncologist secretary in BC found a liver surgeon in Edmonton with about 100 letters behind his name. He has not told us anything about the disease and he has no answers for any of our questions, that is why I am here on the internet 3-4 hours a day after work. Right now, as terrible as this sounds, I feel as if I know more about this disease than the surgeon that specializes in "liver" diseases. At least open a bloody book and do a little research for your patients pal!!! I read on this NG that some people have 1-2 or even 3 oncologists. We have none...yup ...a big fat zero. I asked Rudy tonight as we were discussing this, "What in the hell is wrong wth this picture?". The only information we get is from here, and the Naturopath I work for....except for the bit of information we got from the radiologist the other day, and I am sure he wasn't suppose to say anything. The only information Rudy got from his "liver surgeon" was after the 2nd chemo and the 1st CT scan (this was the 1st signs of necrosis) that the tumor did not shrink and that there was nothing he could do and that he should get his affairs in order! After he told us not to hold our breaths after the 2nd chemo and the 1st CT scan that there is usually no signs of necrosis. He told us this after the 2nd treatment, and then turned around (when there were 4 more treatments scheduled) and said this. Where did he get the right to say this, after signs of necrosis. I get the results of any blood work or CT scans or MRI's right when they are complete....so I know what's going on before Rudy gets his call from this "liver specialist" 3 weeks later. I consult the Naturopath, she deciphers the reports and then I pass this message onto Rudy. (The Naturopath is not just your ordinary Naturopath, she was going into be an MD, but changed her mind...meaning 4 years of premed and 4 years of Naturopath, so she really knows her stuff...I know you were probably wondering) Not only that, they don't tell him anything about when or if to cut back or stop the coumadin etc. It is all guess work. It is like he has slipped through the cracks beetween 2 provinces. We have a lot of patients with cancer that come to our office and they all have an oncologist...except for Rudy! That's why I am here, that's why I look forward to your replies. I thought about Steph, but it looks like Steph is already pretty busy! I really appreciate any help I can get! Mucho Gracias!! Jenny > > Thank you so much for the link to this site. They all look familiar to me as > > I am pretty sure I have been to this one already and to almost everyone of [quoted text clipped - 56 lines] > hugs > J > Thanks again for the information...hmmm, this website I haven't seen yet, > surprise, surprise! The problem J is that we don't have a Doctor per se. He [quoted text clipped - 16 lines] > oncologists. We have none...yup ...a big fat zero. I asked Rudy tonight as > we were discussing this, "What in the hell is wrong wth this picture?". Jenny, Cancers have to be staged before treatment decisions. Did you not read this? <http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/healthprofess ional/> or http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/patient You have an oncologist in BC who surely knows about his type of cancer (or can easily find out). If this surgeon can't tell you what the next step is (surgically speaking), then call and get a consult with the head of his surgical department. If that's not possible, then you'd best get back into the BC system (oncologist) and get some answers as to what the next step should be after his last 2 chemoembolization treatments. Get copies of his current scans and send them ahead and book an appointment for when you get back to BC (is all I can think of, I had no idea you were doing an inter-provincial thing). J Or Stage II One tumor that is more that 2cm with no mets....not sure! > > Thanks again for the information...hmmm, this website I haven't seen yet, > > surprise, surprise! The problem J is that we don't have a Doctor per se. He [quoted text clipped - 20 lines] > Cancers have to be staged before treatment decisions. > Did you not read this? <http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/healthpr ofessional/> > or > http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/patient [quoted text clipped - 10 lines] > of, I had no idea you were doing an inter-provincial thing). > J > We are from BC and he ended up > with an oncologist from BC, but he wanted to go to the city to have this > biopsied since they refused to do it in our local Regional > Hospital....something to do with how it should be done and to go into the > liver 1st and then the tumor That sounds right. That's how they determine the type of cancer. The staging is done with scans and probably removing lymph nodes near (the liver tumour). It seems to me you don't have all the relevant information, before embarking on the chemoembolization, the type and staging must be done first. That's the radiation oncologist's job, the one that you saw in BC. Radiation oncologists work for the BC Cancer Agency. What type of doctor did his biopsy in Edmonton ? and interpreted the result? Wasn't that an oncologist? J I am assuming that he was an oncologist, but the only dealings we have had with are the liver surgeon and the radiologist. The original diagnosis came from Alberta, but it was suspected in BC already! Nothing has been mentioned about staging on any of these reports or from the doctor, however I have looked it up and have come to my own staging for a large tumor primary that hasn't metastisized. The oncologist is BC is nothing more than a glorified grim reaper! It's the liver surgeon that has delivered very little of the news, the radiologist that has opened up somewhat, and the Naturopath that has given us the most information. I think everyone is doing threir job, but they're leaving out one important thing....the patient! Jenny > > We are from BC and he ended up > > with an oncologist from BC, but he wanted to go to the city to have this [quoted text clipped - 12 lines] > > J I went to the staging again, thank you and decided it would be T3,NO,MO Stage IIIA > I am assuming that he was an oncologist, but the only dealings we have had > with are the liver surgeon and the radiologist. The original diagnosis came [quoted text clipped - 32 lines] > > > > J > I am assuming that he was an oncologist Ever heard this one Jenny? Never assUme > , but the only dealings we have had > with are the liver surgeon and the radiologist. I thought you meant radiation oncologist (some call them that here). As far as I know, radiologists aren't qualified to give staging and prognosis. > The original diagnosis came > from Alberta, but it was suspected in BC already! Nothing has been mentioned > about staging on any of these reports or from the doctor, however I have > looked it up and have come to my own staging for a large tumor primary that > hasn't metastisized. That could be a mistake. <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstra ct&list_uids=88279268> Department of Diagnostic Radiology, Mayo Clinic, Rochester, MN 55905 Understaging was responsible for all but one of the staging errors. Distinguishing fibrolamellar hepatocellular carcinoma from more common hepatocellular carcinoma can affect surgical planning and survival. > The oncologist is BC > is nothing more than a glorified grim reaper! Last name of this "reaper"..correct spelling please...? J Scotland > > I am assuming that he was an oncologist > [quoted text clipped - 13 lines] > > That could be a mistake. <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=A bstract&list_uids=88279268> > Department of Diagnostic Radiology, Mayo Clinic, Rochester, MN 55905 > Understaging was responsible for all but one of the staging errors. [quoted text clipped - 6 lines] > Last name of this "reaper"..correct spelling please...? > J > Scotland As far as I'm aware, there is no such radiation oncologist > "Dash" <jenny@netidea.com> wrote in message > > Scotland > > As far as I'm aware, there is no such radiation oncologist but possible? I think I saw on the news a month ago, about shortages in BC..and I've seen adverts on CARO or elsewhere about hiring? J Dr. Len Scotland is an oncologist...I don't think he is a radiation oncologist. > > Scotland > > As far as I'm aware, there is no such radiation oncologist > Dr. Len Scotland is an oncologist...I don't think he is a radiation > oncologist. All oncologists in Canada are radiation oncologists. J > > Dr. Len Scotland is an oncologist...I don't think he is a radiation > > oncologist. > > All oncologists in Canada are radiation oncologists. Gee, sorry Jenny, I have to correct that. There's medical oncologists and radiation oncologists. Either way, I'm sure Steph has access to lists and print materials listing all of them throughout Canada. Maybe even a database. The only question (in my mind) would be how current such is/are, if someone new for instance from another country had just been recently hired. Or someone retired had come out of retirement? J > > Dr. Len Scotland is an oncologist...I don't think he is a radiation > > oncologist. > > All oncologists in Canada are radiation oncologists. > J No, there are radiation oncologists, medical oncologists, and a few surgical, paediatric, gynea, and other oncologists... I know I should never assume!!! The radiologist never gave the staging...I did...just now by looking at that website. But nothing was ever mentioned about staging to us. Can you see how frustrating this has been for me...Rudy has no idea the questions that should be brought up...it's a good thing he has me for an advocate, it keeps those doctors honest...and that was a quote from one of the doctors! > > I am assuming that he was an oncologist > [quoted text clipped - 13 lines] > > That could be a mistake. <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=A bstract&list_uids=88279268> > Department of Diagnostic Radiology, Mayo Clinic, Rochester, MN 55905 > Understaging was responsible for all but one of the staging errors. [quoted text clipped - 6 lines] > Last name of this "reaper"..correct spelling please...? > J > The oncologist is BC > is nothing more than a glorified grim reaper! I would not think it unreasonable to view liver surgery as serious and it seems, if he's been diagnosed properly.....surgery would have been the option, but perhaps not because of the location close to the portal. So I can certainly see an oncologist saying "get your affairs in order". http://www.oncologychannel.com/hepatobiliary/types.shtml Fibrolamellar Hepatocellular Carcinoma (FL-HCC) This variant of HCC tends to be more indolent (develop slowly) than the classic variety. It has a slight female predominance and is not typically associated with hepatitis B or C, fibrosis, or elevated alpha feto-protein (AFP) levels. The response to chemotherapy is poor, so this variant is most often treated with surgical resection or transplant when possible. > It's the liver surgeon that has delivered very little of the news, <snip> I > think everyone is doing their job, How can you say that when you say no answers are forthcoming from the surgeon as to the next step? Perhaps the weak link is failure of communication between your husband and the surgeon? Perhaps you need to go there and speak to the surgeon yourself? > but they're > leaving out one important thing....the patient! There is no "they" as in "cancer team" as most people have. You and your husband are "running the show". Perhaps you are on the right track, I surely do not know. And I don't know that I'd rely on much that a naturopath said to me. Steph has wisely stayed out of this (so far). Hugs and best wishes, let us know. J Yes, I realize that liver surgery is a serious matter. The surgeon said after the 2nd chemo that so far, up to this point there would be no surgery due to the size of the tumor. Also, there would be no transplant. I could understand "get your affairs in order if 1.) it was the very last chemo and there was nothing more they could do and all his blood work wasn't "normal" or within normal ranges for bilirubin, liver enzymes signs of necrosis etc. etc. 2.) he looks and feels great, even after the 4th chemo treatment. Even the liver surgeon's receptionist said that he didn't look like a "sick" guy! The surgeon said he wanted to try to shrink this tumor and then eventually remove it! But right now (after the 2nd chemo) that wasn't possible. Now after the 4th chemo, the tumor is dead inside. But we did not hear that from the surgeon, we heard it from the guy that administers the chemo-embolization. I was thinking since it is past of the radiology department, that he was the radiologist. I sure have a lot to learn about "titles". One thing is, I do feel like we are on the right track! Jenny > > The oncologist is BC > > is nothing more than a glorified grim reaper! [quoted text clipped - 33 lines] > Hugs and best wishes, let us know. > J > <snip> > The surgeon said he wanted to try to shrink this tumor and then eventually > remove it! Well, there you go Jenny, You have your answer. Just for the record, if I had surgery for lung, colon, pancreas or liver, I'd sure get "my affairs in order" first. I suppose some of that's in the "defining" of the phrase. ..making work arrangements ..arrangements for help with kids, pets, after-surgery home care..etc etc. ..will and "living will" (in case something went wrong)..things do go wrong, you realize? did for my Dad. Actually, a doctor of radiology might be able to state some opinions. One did for me at the hospital, after a CT scan I think. A radiology technician, I would think, is not allowed to say what they think they see on imaging, is my understanding. Not to worry, we're all learning, life's a learning curve, right ? :-) Keep us posted, Hugs J > Yes, I realize that liver surgery is a serious matter. first, so we can keep things straight, can you call it chemoembolization (instead of just chemo)? It might be confusing to others who are taking IV or oral chemo. The other thought is the Coumadin (blood-thinner) puts him at huge risk of "bleeding out" during surgery. The liver is full of blood. So perhaps he has to talk to the surgeon about exactly when he has to stop the coumadin and then how long it will take his platelets etc (bloodwork) to recover enough fo/before any surgery to be considered?? Just my after-thoughts. Hugs J Thank you for your help with all these posts. I really appreciate it! :) Yes, I will call it chemo-embolization to clarify that there is a difference. He is taking the coumadin from the original hospital stay where he had the blood clot on the lung, enlarged heart, pneumonia etc. So far, he's figured out the coumadin protocol for chemoembolization treatments. So far, everything has obviously been okay for the bloodwork etc to do this. All these titles are confusing me especially if I can't be present, butu I guess I am more present than I think! If this is true, that the tumor is "dead" inside, do YOU think it is possible that they may not have to do surgery? Have you heard of a tumor this size, 11cm X 12cm X 13cm dying inside this quickly. 1st round of Chemo-embolization started on my birthday June 26, 2003. 4th was October 30, 2004 You're the best J... Keep 'em coming! Jenny > > Yes, I realize that liver surgery is a serious matter. > [quoted text clipped - 12 lines] > Hugs > J > Thank you for your help with all these posts. I really appreciate it! :) > Yes, I will call it chemo-embolization to clarify that there is a [quoted text clipped - 12 lines] > Chemo-embolization > started on my birthday June 26, 2003. 4th was October 30, 2004 Jenny are you sure about that size? mm's (millimeter) maybe? Jenny, I don't think surgery is a wise idea. My cat has cardiomyopathy (enlarged heart). She could never have surgery, she'd die on the table. You'd have to check what I say with a heart specialist, anesthesiologist, surgeon etc. You see, I think he'd have to stop the coumadin because of the liver for the surgery, which would have him at high risk for the heart for surgery. Perhaps that's why the onc said what he did. I'm sorry if I'm right, I'm sorry if I'm wrong about that. Hugs J I hope this works! I am at work now and have set up the NG from here. I hope I have done this correctly so it still comes up as "Dash" that's good. If not, I apologize to anyone out there reading these. Everyone already knows I work for an ND anyways. I have not been secretive of this. J. oringinally, Rudy had SOB, blood clot on the lung, enlarged heart and pneumonia. It was by fluke that the doctors discovered the "mass" through many chest xrays etc. They put him on coumadin to thin the blood for the "blood clot". He no longer has the above symptoms, but is still on the coumadin as a precautionary measure. I would say he no longer needs it, but hey, I'm not the doctor. He no longer has an enlarged heart. The liver surgeon believes that it was the "mass" that was pressing up against the main portal vein that caused the above symptoms. I hope I have made myself clear on this. Yes, the tumor is 11cm X 12cm X 13cm, about the size of a grapefruit. The surgeon wants to try to shrink this tumor so he could remove it, but after the 2nd chemo-embolization, he said he was unable to do so. It almost sounded as if he wanted to stop this procedure altogether, but he still had 4 treatments left at that point. So, after the 4th Chemo-embolization Rudy asked the Radiologist what he saw on the camera, (usually the radiologist -a pleasant upbeat man) says nothing. This time, a quick conversation said that the tumor was "dead" inside, with only the outside perimeter left. This, he said was a very good sign and that they were headed in the right direction with this. I think my question to the NG concerning this "dead" inside tumor was this: 1.) What happens to the tumor now? Does it dissolve and he can poop it out. 2.) Does it stay as scar tissue? 3.) Do they still have to remove it with surgery if it's "dead" 4.) Will it still be a problem for the portal vein? 5.) What does one do with a "dead" tumor? These are all valid questions...so I hope you guys/gals can help me with this, since I have already received huge advice on here. J, what do you think? Steph, any comments? So here you have it... 1)SOB, enlarged heart, blood clot on the lung, pneumonia 2)Hospital stay, xrays, mass, 3)No more SOB, enlarged heart, blood clot on the lung, pneumonia 4)MRI, biopsy to follow 1)Fibrolamellar - Tumor 11cm X 12cm X 13cm pressing up against the portal vein. 2)Chemo-embolization to try to shrink it. 6 treatments altogether 3)2nd chemo-embolization 1st CT scan - little necrosis - no surgery at this point allowed 4)4th chemo-embolization - according to Radiologist Doctor - tumor dead inside except for the outside perimeter. 5) Blood work great! Liver enzymes normal range, bilirubin normal range, etc etc all normal. I hope I mentioned everything! This NG is awesome!!! There is an awesome group here!!! Thanks! Jenny :) > > Thank you for your help with all these posts. I really appreciate it! :) > > Yes, I will call it chemo-embolization to clarify that there is a [quoted text clipped - 30 lines] > Hugs > J > Rudy had SOB, blood clot on the lung, enlarged heart and > pneumonia. It was by fluke that the doctors discovered the "mass" through [quoted text clipped - 45 lines] > I hope I mentioned everything! > This NG is awesome!!! There is an awesome group here!!! Hi Jenny, Your message came through ok. I really don't know the answers to your questions. I'm sorry. Unless Steph has something to say, then perhaps since this procedure and your husband are in Edmonton, he/you have to work with specialists in Edmonton. Do keep us updated on how you and he are doing. Hugs J > first, so we can keep things straight, The other thought is the Coumadin Yes, let's do. I have no clue where that came from (coumadin). My apologies. My mistake J > > first, so we can keep things straight, The other thought is the Coumadin > > Yes, let's do. I have no clue where that came from (coumadin). Cancel this. I wasn't dreaming it after all..Google archives played a trick on me. arghhh ! J > The oncologist is BC I'd be sending him (now) copies of the biopsy report(s), MRI's with a letter asking him to please look them over, then file them in your husband's file. Your husband (once home), may require further care ....folllow-up... Unless of course, your husband plans to continue staying in Alberta and you in BC. J Well, yesterday I spoke with the receptionist at the Liver Sugeon's clinic in Alberta and told her that I thought it was strange that we did not have a "cancer team"....She then told me, that the doctor that was performing the chemo-embolization was the one we should be directing questions towards about anything. So there you have it....we had never been told this before. So J, you know what this means??? The radiologist doctor that told Rudy the tumor was dead inside, was the "horse's mouth". (not some technician). I was so excited to hear this since we hadn't heard anything from anybody else about this since his next CT is sheduled for Dec 11, and the next chemo-embolization is scheduled for Jan 22. We probably won't hear anything about he "dead" tumor from the liver surgeon until after the next CT scan! I will definately keep everyone here posted. Jenny > > The oncologist is BC > [quoted text clipped - 4 lines] > BC. > J > Well, yesterday I spoke with the receptionist at the Liver Sugeon's clinic > in Alberta and told her that I thought it was strange that we did not have a [quoted text clipped - 11 lines] > I will definately keep everyone here posted. > Jenny Hi Jenny, you'll have to remind us (the group), since your posts here will probably have cleared by those times. This must be so hard on you both being apart. Is your husband going home in between treatments? Hugs J Yes, it is difficult being apart, but I also know it is for the best that he is getting the treatment he needs in the city...and yes he comes home in between treatments. Although, since I have to work, he is planning on going to Arizona for a month to get some warm sunshine as his fear at the moment is getting pneumonia again. This is what got him into the hospital to begin with in the spring this year. It can get pretty cold in Alberta, as it is already cold here in BC for this time of year. We usually don't get this weather until January (3rd week). He is feeling house-bound since he doesn't want to go around groups of people for fear of getting the flu, or much worse, the pneumonia. Can't blame him! I told him to go, and I'd pick him up at the airport in Spokane in 1 month! Am I a great wife, or what? :) I only want the best for him, because life is too short for it not to be. I only wish that I could be there with him. Thanks for asking! Jenny > > Well, yesterday I spoke with the receptionist at the Liver Sugeon's clinic > > in Alberta and told her that I thought it was strange that we did not have a [quoted text clipped - 18 lines] > Hugs > J > Yes, it is difficult being apart, but I also know it is for the best that he > is getting the treatment he needs in the city...and yes he comes home in [quoted text clipped - 9 lines] > want the best for him, because life is too short for it not to be. I only > wish that I could be there with him. Hi Jenny, Glad he's able to have a "getaway". Spokane sounds like a long drive for you or are you flying there? Arizona sounds wonderful about this time of year. Yep, you're a great wife, hope the time flies and he'll be back with you soon. :-) The procedure isn't paid for by BC? Here, procedures not available in one Province, have to be pre-approved first by OHIP...time and bureaucracy... No idea if it can be "back-claimed" or not in special circumstances. Since the treatments are so widely spaced apart, do keep us updated as the treatments come along or new information becomes available. Your posts will be clearing my newsreader before and I might lose track of you, if you don't. Take care, J Hey J., I have been following the NG every day, but I have nothing to report. I guess we'll have to wait for the next CT scan which will be on Dec 11. Rudy's 4th chemo-embolization went really well with no side effects, no hair loss etc etc..just a little tiredness. He has been fortunate through all of this not to be "sick". We are actually located 3 hours north of Spokane Wa. Right on the Canada/USA border. The treatments that he is receiving are paid for since he was referred by the local oncologist (not really an oncologist, but I think an internist??) to a Liver Surgeon in Alberta that specializes in his condition. We have been very fortunate this way. We are hoping, now that his tumor is "dead" if it will shrivel up and go away, or if it will need to be sugically removed. I guess we will have to wait for the next CT scan. I will definately keep everyone posted with any news! Thanks for asking! Jenny > > Yes, it is difficult being apart, but I also know it is for the best that he > > is getting the treatment he needs in the city...and yes he comes home in [quoted text clipped - 28 lines] > Take care, > J > We are actually located 3 hours north of Spokane Wa. Right on the Canada/USA > border. I see, Because of Edmonton, I assumed you were referred to the closest large city and were more NorthEast BC. > The treatments that he is receiving are paid for since he was referred by > the local oncologist (not really an oncologist, but I think an internist??) to > a Liver Surgeon > in Alberta that specializes in his condition. Is that treatment not available in Victoria or Vancouver? J Hey J, No, the chemo-embolization treatment is only available in Edmonton, Alberta in all of Canada apparently from what we have been told. There have been other patients from all over the country that have flown to Edmonton to get this treatment. We have been very fortunate to have Rudy's family live there, so it has cut down on costs considerably. They have scheduled what was suppose to be his next CT scan on the 11Dec and changed that to a chemo-embolization treatment. They have also scheduled a MUGA. We are not sure, but are thinking that the MUGA now may be for possible surgery since the tumor 11cm x 12cm x 13cm is now dead, except for the outside perimeter must have shown signs of shrinkage. The first MUGA test was to see if he could handle the procedure of chemo-embolization, so I am assuming, the next MUGA will be to see if he'll be able to handle surgery. I will keep you posted! Jenny :) > > We are actually located 3 hours north of Spokane Wa. Right on the Canada/USA > > border. [quoted text clipped - 10 lines] > Is that treatment not available in Victoria or Vancouver? > J Jenny, I apologize for saying in other posts, that your husband does not have cancer. Of course he does http://www.cancer.gov/cancerinfo/pdq/treatment/adult-primary-liver/healthprofess ional/ My sincere apologies. J > The problem J is that we don't have a Doctor per se. He > never ever had to go to a doctor for anything before this little incident > with the pneumonia etc. Healthy as a horse. We are from BC and he ended up > with an oncologist from BC, but he wanted to go to the city to have this > biopsied since they refused to do it in our local Regional > Hospital.... I recognize there are "doctor problems" in remote areas of BC. There are acute doctor problems where I live in/near major centres (over 20,000 people including doctor's family can't find a family doctor). I find it hard to believe a person can live with such a large tumor without noticing some symptoms, some time. There's something to be said (at a certain age) to have a family doctor and annual checkup. I would suggest that you start looking ASAP. Unless of course, your husband plans to continue staying in Alberta and you in BC. j > What I don't understand is this: Does this mean the tumor will shrink and > disappear? Does it mean no more malignant cancer (for now) I know there is a [quoted text clipped - 3 lines] > vein?? I know Rudy is not too keen on having surgery, but if they thought it > was safe enough to do, and they "had" to do it, he would have the surgery. Here's something you could try Jenny. Post to news:sci.med.diseases.cancer (click on this if it's highlighted and your newsreader should automatically subscribe) and cross-post your post to sci.med Both newsgroups might have surgeons. Name it "surgical question - help please " Age of the patient Explain the type of cancer, size of tumour if you know, near the portal vein, about the 4 chemoembolizations, the response so far, and 2 more to go. On coumadin and why..(I forgot to ask you that one). Don't mention Canada. "fib" and say you are in one state with kids and job, and he's in another state getting the chemembolozation and not well enough to remember to ask his surgeon these questions. No oncoloigist involved because it's your understanding that this type of cancer does not respond well to chemo. That you need to know if surgery would be the next step ...removing what's left of the encapsulated tumour versus "watch and wait" and ask for their opinion and/or experience, so you can make arrangemnts for job and kids to be there with /for him if surgery. How's that? (actually some of them could be reading this newsgroup, but are not allowed to post here unless they first provide their degrees, major/minors, university, year it was earned, and years experience. etc etc and some probably prefer to be anonymous, so can't post here. Hopefullly you'll know (of the repliers, if any) who to ignore. J |
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