January 16, 2014 at 10:34 pm #78449
I am in San Francisco GI Symposium now,
My suggestion is to wait after the results from your son’s radiologists reading then I will feel much better to ask favor from the doctors to follow your case.
Remember ,you are right, nothing is free in this world, simple 2nd opinions are free most of the time,but detailed ones are not; and you have to know which one to send first to maximize the benefit. They will prefer a face to face consult and therefore when they indicate for a ” full consult” from you, that means you have to pay to see the doctor for detail advice, and there will be a written report send to you GP if ask. No one that I know will give a written report for a free consultation.
Karen,RN from NW is very knowledgable ,but everybody wants to do business when able.
God bless.January 16, 2014 at 7:57 pm #78448
Percy – Thanks again for your kind advice – Unfortunately, some family issues arose a few days ago (involving my wife’s family and having nothing to do with my CC) and I’m now back to moving forward with getting second opinions –
As I indicated in a prior post my daughter in Chicago personally took my records to the Northwestern Hospital Interventional group a few weeks ago and they wanted to move forward with a Y-90 procedure – Apparently several doctors in the group looked at my records but the only way I learned what they recommended was from my daughter who got the information from one of their nurses who was very helpful and very knowledgeable but I never saw anything in writing –
I’m now going to send all my records to MD Anderson with a request that they do an interdisciplinary review but I’m confused as to how this should be done – I’m going to mail all my records (including PET, CT scan discs) and request that they do a second opinion but I don’t plan to personally go see them at this point – Can I expect them to give me an opinion on this basis or must I be there in person? Also, will they give me a written opinion? Additionally, are these second opinions done on a pro bono basis or should I provide them will my insurance information when I send the records? I realize I should probably know the answers to these issues by now but I don’t know the proper protocol –
I’d really appreciate it if you’d give me a little guidance on how to proceed – Thanks so much –
PS – I have, as you suggested, sent my records off to my son who is Radiology Manager at University Hospitals in Cleveland – Don’t know why I didn’t think of doing it months ago!!!January 10, 2014 at 4:22 pm #78447
You are always welcome.
since your son is the manager of the radiology dept. of the hospital; If I were you, I will ask him to ask his radiologists friends in his department to reread your previous PET and CT scans and the future ones to get a better idea and comparison. As you know, it depends on the experiences and knowledge of the doctors to read the scans and differences of reading are not uncommon.
God bless.January 8, 2014 at 8:56 pm #78446
Hello Percy – I’ve been reading many posts since I joined this site last September and have noticed that many of the long term participants refer to you by name so I hope you don’t mind if I do also –
Thanks for responding to my post – I was hoping you would do so – I’ve reviewed many of your incredibly informative posts (including your personal very detailed treatment chronology) during the past few months and will immediately review all the links to which you referred in your post yesterday –
Here are my responses to your specific inquiries:
1 – I was unaware of the ROAD MAP post so haven’t reviewed it but I will get that done as soon as I finish this post – Thus far, my Oncologist and Dr Ahmed (surgical Oncologist associated with the OHC group) both agree liver surgery should be ruled out – Reasons for this are the extent of my tumors and my age (80) –
2 – Gem/cis started, as you guessed, on 9/27/13 and you are correct in that my situation after three cycles is STABLE – My Oncologist is very pleased with everything at the moment –
3 – The information you provided in this paragraph was exactly what I was looking for and I will thoroughly discuss this with my Oncologist when I go in on Friday for chemo (2nd treatment of the 5th cycle) – I will also discuss systemic chemotherapy, targeted therapy and clinical trials with him –
4 – My tumor marker is, as you surmised, CA19-9 – Also, the first date done should be 8/27/13 and not 3/27/13 – Your excellent suggestion that time is not on my side is well taken and I will send off a 2nd opinion request this week to Dr Jalve at MD Anderson – I will also begin the discussion on Friday with my Oncologist as to beginning planning of viable treatment plans to be used in the event my situation does not show improvement when we do the next CT and Tumor Marker in early February –
5 – I know nothing about the procedures you mentioned in this paragraph but I fully intend to educate myself about them forthwith – Fortunately, one of my sons is Manager of the Radiology department at one of Cleveland’s newer hospitals and he tells me they’re doing a lot of Chemoembo, Radiembolization and Cryoablation in his department so I’ll get him to explain all that to me!!
You have no idea how much I appreciate your kindness in providing me with all this wonderful information and guidance – You have obviously spent a lot of time and effort accessing and compiling all this and over the past four months I’ve read many of your posts wherein you’ve helped many such as myself who are in serious need of help in trying to find their way through bewildering and heartbreaking situations –
Your caring attitude and charitable willingness to assist strangers is truly inspiational – Thanks so much –January 8, 2014 at 1:34 am #78445
1.I hope you had read the follow link, the part of the road map ; if so I presumed that liver surgery was being rule out,right?
2. what is the exact date you started the Gem/cis, Is it started around 9/27/2013? Base on that and the CT scan report from 11/11-12/26/2013,
I assume that your situation are STABLE after 3 cycles of Gem/Cis. (the 8/30/13 report did not mentioned any size and numbers of the tumors.)
3. You have both lobes of the liver involved;also the lymph nodes are involved(base on the 8/30 report); therefore systemic chemotherapy or targeted therapy are the best choices; you should also consider clinical trials since under NCCN guidelines ,for advanced unresectable CCA , clinical trial is recommended. Below are some of the clinical trials I find under this web site.
I find some clinical trials under this web site,but I did not go into the details of each one,so please forgive me if not suitable for you. Those are #2 (XL184);#4 (PDT);#21 Pazopanib;#33 (Adoptive Immunotherapy);#36 CPI-613 ;#50 LY-280-1653 AND #60 cd8+young TIL.
4. I presumed your tumor marker is referred to CA19-9(ie:3/27/13 – 356; 10/22/13 – 333; 12/13/13 – 450 -); It is raising but just slowly; At this point I will not pay much attention to them , it may relate to the effects of the chemotherapy or the inflammation caused by the ICCA is still there. And I think you mean 8/27/13 instead of 3/27/13, right? However, I will pay more attention on the next tumor marker result on early February.; If it is still raising and there is no change in the Ct scan in February ; then I will question the oncologist what s/he will do next? may be a switch of chemotherapy will be of benefit? Of course; if the next scan shown disease progress, and the tumor marker is raising again ,then you know the GEM/CIS is not working and you need to discuss the result with your oncologist, in the mean time . If I were you ,I will get 2nd opinion from another medical oncologist ASAP (ie:Dr. Jalve in MD Anderson)to look for options now and be prepared just in case.
5. Since you have lymph node involvement,I do not think Y-90 can take care of them alone; so If I were you, I will not consider that option at this point.But down the road you may have to do chemoembo or segmental radioembolization as NW suggested;and make sure they can take care of the lymph nodes too by cryoablation or IRE.
I do think the time is short if you do not start ASAP to pursuit other systemic treatment or clinical trials (ie:they take a lot of time from you to check out whether you are suitable for the trial;or from your oncologist, if they change your chemotherapy, it will at least take another 8 weeks for the next CT scan to check the result of the new chemotherapy to see it works or not.)
The reason is simple because of your tumor load is not decreasing ,sooner or later the liver function will be affected and therefore will also affected your treatment options.
6. Please remember, I am only a patient like you, I am not a doctor, if my medical history can be of any help please check the link below and just start reading on 3rd recurrence and you may get some ideas.
God bless.January 7, 2014 at 10:34 pm #78444lainySpectator
Hello Adjuster it sounds like you are at least remaining stable. We have heard of Dr. Crane on here and he seems to have a good reputation. I am curious if you brought up to him what NW in Chicago said about Y90. It appears on this Board that GEM/CIS is the first treatment of choice. I would also ask Dr. Crane what he plans to do next. If you are not satisfied at that point I would at least go to NW for a consultation in person. People do take a Chemo break now and then as the Chemo keeps on cook’in. I am glad to hear you have adjusted to the Chemo so well. Guess the first thing I would do is sit with Dr. Crane and have a list of questions ready. That may help a lot Best wishes!January 7, 2014 at 9:30 pm #9363
Four months ago I asked my family doctor about a funny lump on my stomach – She ordered a CT scan which resulted in my lump being diagnosed as ICC – None of my family or friends had any idea what we should do next so my youngest daughter started doing intense research and found your wonderful resource – We signed on and got lots of very good advice, which we’ve followed, as to what we needed to do to begin to get our hands around the situation – However, it appears to me we have not yet developed a definitive treatment plan so I hope the many knowledgeable members of this board will be kind enough to provide me with some leadership –
My Oncologist, Dr Edward Crane, is affiliated with OHC which is a large multifaceted medical group here in Cincinnati – My wife does hospital revenue cycle coding audits here and aound the country and advises me that the OHC group and Dr Crane are highly thought of in this area – He is very pleasant, knowledgeable and professional but I don’ know how much experience he has with ICC –
My treatment, thus far, has consisted of four Gem/Cis cycles (once a week for two weeks followed by one week off) and we started the fifth cycle last Friday – I have had absolutely no side effects from the Chemo at any time – It appears to me that Dr Crane plans to complete 6 Chemo cycles and then discontinue the Chemo treatment – We haven’t discussed what will be done after that –
My original CT scan (done on 8/30/13) briefly contained the following descriptions – “…extensive infiltrative mass involving the liver which is associated with nodular lestions extending throughout much of the left hepatic lobe and involving the anterior segment of the right hepatic lobe – Multiple borderline to mildly enlarged lumph nodes have developed within the left gastrohepatic ligament , porta hepatis and portacaval region whih are compatible with nodal metastases -“
CT scan done on 11/11/2013 – “…..Subpleural nodule located posteriorly within the left lower lobe 8 x 14 mm previously 6 x 10 mm – Nodule located posteriorly in the right base is 4 x 10 mm previously 6 mm – Enlarged gastrohepatic nodes are present – 13 x 14 mm node previously approximately 9 x 12 mm – Low-attenuation left renal lesion laterally is 14 x 21, unchanged –
Mildly enlarged periportal nodes are present – Overall, gastrohepatic and periportal mild adenopathy, slightly increased from last CT – Small lower lobe pulmonary nodules, slightly increased from last CT – Extensive confluent low-atenuation masses throughout the liver most prominent anteriorly – Overall slightly increased from prior study “
CT scan done on 12/26/2013 – “Overall, no significant interval change in appearance of the liver compatible with known biliary neoplastic process – Sigmoid diverticulosis – Unchanged small bilateral pleural-based lower lobe pulmonary nodules -“
In addition to the foregoing we’ve done three Tumor markers since August – Results were as follows: 3/27/13 – 356; 10/22/13 – 333; 12/13/13 – 450 –
Finally, my blood tests over the past four months have all been excellent with
no noteworthy poblems –
My daughter submitted my medical file, including discs, to the Interventional Radiology group at Northwestern Hospital in Chicago – This was done three or four weeks ago – They felt we should do a Y-90 procedure right away – We didn’t do it immediately because I felt the Chemo was working and I wanted to see where it would go before embarking on a new treatment – Also, my wife was not sanguine about the Y-90 procedure because in her coding audits she has reviewed the results of many such pocedures and has seen some really unfavorable outcomes – I am, after all, 80 years old and although I am completely positive that I can handle anything I must admit I am somewhat reluctant to begin new treatments before completing ongoing treatments that appear to be working –
So, I must admit I am confused and somewhat uncertain as to what should come next – I am not terribly enthusiastic about stopping Chemo and waiting to see what happens without treatment of any sort – I’m also confused about the reults of the Chemo since the tumors don’t seem to have gotten either larger or smaller – I’ve read about all sorts of treatments that are being tried but I don’t seem to be able to determine what, if anything, should be tried first and what upsides or downsides are connected to each treatment –
As I indicated elier, I have always been as healthy as a horse, I am very positive, I feel great and have no pain of any kind (which makes me wonder at times whether I have been correctly diagnosed) and I am willing to do whatever needs to be done to prolong my health and my life so I can enjoy my great grandchildren (which I don’t have yet!!) –
Sorry I’ve gone on so long with this tome – If anyone has had the stamina o read through this whole thing and have any suggestions, I’d really appreciate it if you’d pass them along to me –
Thanks to all and Happy New Year!!!
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