New member, new diagnosis, new to all of this.
Discussion Board › Forums › Introductions! › New member, new diagnosis, new to all of this.
- This topic has 25 replies, 10 voices, and was last updated 10 years, 10 months ago by pcl1029.
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December 9, 2013 at 4:37 pm #77167pcl1029Member
Hi, Kerry,
Nice to hear you like Northwestern.
They are the pioneer of Y90 development.; there are a lot skillful interventional ridiologists there to help you out.
Please , after comparing of other options(ie: chemotherapy ,targeted therapy from oncologist; IMRT from radiation oncology and chemoembolization from IR and Liver surgeon from Dr. Kato.) ;sitting down and list the pros and cons before you finalize your decision.Ask what if y90 don’t work and what will be the next opinion from Northwestern.
Can they do segmental radioembo to less the toxicity as compare to doing the whole liver all at once if there is a choice.God bless.
December 9, 2013 at 4:36 am #77166lainySpectatorDear Kerry, Don has one of the most spectacular attitudes I have ever heard about and that will carry him far. It is so much harder to deal with denial (Mom). And especially hard when the child and the parent have to switch roles. If there are 5 siblings are the others around to help you with some of the leg work? I understand your Dad’s comments about everyone being brave. Teddy once told me he never wanted anyone around him crying as he spent time steeling his mind for what was to come and he could not be strong if we were not strong. And for you little grasshopper you have already learned well getting your degree in CC101. I have heard Dr. Crane is a very good ONC but even so it is always good to get a 2nd opinion so you will always feel you have turned over every stone. The ONCs don’t mind. I hope you get some good news with this next scan and reproduce the family party again. Please let us know, we truly care.
December 9, 2013 at 4:10 am #77165kwilson60613SpectatorI haven’t written in a while, but I went home to Cincy for Thanksgiving as did the rest of my family and it was great to see everyone and hang out together. My dad did well, he seems to tire out a bit easier but that’s to be expected. We all spend lots of time together, and sat around the dining room table after dinner one night, laughing and joking around for hours. It was exactly where everyone wanted to be at that moment and I’m so grateful that I was a part of it.
My dad is still tolerating chemo quite well, all things considered. He’s lost some weight, and looks a bit more fatigued than he did before, but otherwise he still seems to feel pretty decent. He had a kidney infection that he took meds to treat, and as far as I know it is under control at this point.
The onc seems to feel strongly that my dad’s tumor has shrunk (just by feel and touch to my dad’s abdomen) and has ordered another scan to confirm/deny this.
I also sent his history and scans to a few other doctors/specialists/hospitals after reading all of your helpful responses. Karen Marshall, the nurse I have been speaking to at Northwestern’s IR dept has been WONDERFUL. I have never come across someone as informative and accessible. She gave me her cell phone number, called me after hours just to make sure my call was returned, and explained all of the possibilities regarding treatment for my dad in depth and in a language I could understand. She was surprised at how much I knew about IR, which in turn surprised me, but hey, I’ll take it! If only I had put forth this much effort into studying when I was in school! She and I have been playing phone tag but I plan to speak with her tomorrow and have a more in depth conversation as to their findings. From what she left on the voicemail, she (and the Radiologists that viewed my dad’s case) is of the opinion that performing the treatment where they go in and surround his liver tumor with small beads filled with radiation would indeed be beneficial to his situation. She had a sense of urgency on the phone and mentioned him coming up to Chicago as soon as next week to do the initial mapping of the liver in order to figure out the dosing, etc. I tried to call her back, but it was too late in the day to reach her so I sent an email letting her know that at this point she needs to speak with my dad directly, as this is his decision. I am not exactly sure if he understands exactly what the procedure entails, the benefits, drawbacks, etc. and I think it would be much easier for him to get the answers he’s looking for if it comes from someone who deals with this on a regular basis, as opposed to me trying to relay the info from the docs and nurses.
Until now, my mom has been a mostly silent player in the information game. It’s somewhat surprising to me, since she is in the medical world and has been for 20+ years (on the medical records side of things). When I initally broached the idea of securing more opinions, she immediately became defensive and insinuated that I didn’t trust the ONC in Cincy or his opinion on my dad’s current treatment. On the contrary, I think Dr. Crane is a fantastic oncologist. But he is just that…an oncologist. He is not a radiologist nor is he god. I tried to reiterate this a few times, calmly, to no avail. My dad sent me an email shortly after requesting that I continue to move forward with opinions, and that we keep things between us (us meaning he and I) until something worth discussing came to be. Well, after learning of the IR side of treatment regarding ICC, I think that time has come. It seems to me that in a way she is doing exactly what she feels her role is in this scenario…to be my dad’s caretaker and support system. She’s doing an excellent job, and frankly I think she’s too scared and too exhausted to look beyond what’s right in front of her. Her best friend lost her spouse to cancer some years ago, and he tried all kinds of trials when he ran out of approved treatment options. I think she’s fearful that agreeing to something that is not part of the initial “plan” will put my dad into a similar situation and that he will be in pain, or subjected to something that will make his situation worse, given the fact that he is tolerating chemo so well. My hope is that after presenting this info to both of them, that she will open her mind to other avenues and advice regarding possible treatment options and resist new information a bit less. I continue to tell her that we are all on the same team. If he decides to pursue IR, then I will do whatever is necessary to help. If he doesn’t I will be completely ok with that too, as it has been and will continue to be his decision, and his alone.
Thanks for letting me vent! I love both of my parents and am offering whatever support I can to each of them. Some are just a bit more stubborn than others.
I will update everyone when I have a better idea of how this is all going to shake out.November 22, 2013 at 2:52 pm #77164kwilson60613SpectatorPCL,
Thanks for the link. I found that same page yesterday right before I read your
Response and contacted one of the nurses within IR via email. She called me this morning and said they are more than happy to review his case and to send them over his info ASAP. So, that’s what I will do.Lisa, thanks for the message! Cleveland clinic was on my short list as to who to track down next in the way of consults!
Also, sending his stuff to an IR at the univ of cincy that was recommended to me by a good friend/nurse anesthetist at the hosp. She asked around and this seems to be the guy to go to. Dr. Ristagno… And also to Dr. Chapman in St. Louis.. We shall see what happens!
Kerry
November 22, 2013 at 5:44 am #77163lisacraineSpectatorKerry and Don welcome,
I am treated at The Cleveland Clinic Taussig Cancer Center and they are wonderful. If you would like to talk, please feel free to call me.
Lisa Craine
330-903-6868November 22, 2013 at 4:32 am #77162pcl1029MemberHi,
For interventional radiology at NW ‘please check the link below.http://io.nmff.org/physicians/
God bless.
November 21, 2013 at 11:43 pm #77161kwilson60613SpectatorThanks so much for the advice! My brother said that they met with the nurse practitioner at the last treatment, and from my understanding she essentially told them that they needed to discuss other treatment options with Dr. Crane himself. My dad has the next two weeks off (one because it’s his usual 3rd week off of treatment, and the following Friday due to the Thanksgiving holiday) so he will meet with the oncologist again at the beginning of December when he returns to begin the next round of treatment.
My dad sent me all of his scans, etc. so I will be receiving them tomorrow in the mail and plan to send them to Dr. Chapman, in St. Louis, based on the research I’ve done and also based on the wonderful reviews of him on this site. I’ve also sent preliminary info via email to my contact at the University of Chicago, and she is sending it to the GI oncologist, so once he receives my email, we will go from there. I will contact Northwestern tomorrow and find out how and to whom to send his records in order to receive an opinion/consult, etc.
I will let you know what I hear back from them! Will they offer an opinion based on his records or does he have to physically go in, in order to obtain a consult? Not entirely sure as to the protocol for all of this. I know people on here have said that the doc in St. Louis (Chapman) is willing to look at his stuff without requiring a visit, was just wondering if you know how any of that works at Northwestern, Rush, etc.
I appreciate your help and advice regarding all of this, it’s been hugely helpful. I also appreciate everyone else chiming in with positive thoughts and useful information. This website has been a godsend. My dad is still in positive, great spirits and still continues to be his old self. Chemo this past round knocked him down a bit for a day or two after, but his energy level bounced back to normal after taking it easy for a few days.
November 21, 2013 at 11:24 pm #77160pcl1029MemberHi, Kerry,
What are the doctor’s opinion on your father’s case when your brother went to the appointment with him last week.
The best place for CCA is a multidisciplinary team approach from Mayo clinic or
Washington University at St. Louise, to review your father’s case.
but if you have already known what you want to do in general(ie: after your brother’s trip with your father to see the doctor) . Northwestern University is famous for its interventional radiology department to perform RFA,IRE,microwave albation,cryoablation ,nanoknife chemoembolization and radioembolization.
I think for medical oncology(chemotherapy) consult, either univ. of Chicago GI oncology or Northwestern and Rush will do a fine job.
God bless.November 21, 2013 at 4:56 am #77159kwilson60613SpectatorHi! PCL, so glad to hear you live in the Chicago area, I have so many questions! My dad sent all of his scans, records, doc notes etc to me in the mail today, to give to other physicians here in the surrounding areas in regards to additional opinions, etc. Any suggestions as to where to start? I’m not sure how to go about contacting some of these doctors to check and see if they will even take a look at his records, etc. I have a few connections at the Univ of Chicago, but am trying to find a doc who treats this cancer somewhat regularly and who will also be willing to give an opinion regarding his diagnosis/treatment plan/options. I know you’re well versed in all of this so any thoughts or suggestions would be wonderful! Thank you!
KerryNovember 20, 2013 at 6:10 pm #77158pcl1029MemberHi, Kerry,
I live in the Chicago area, Can you tell me who are the interventional radiologistand oncology radiologist you will consult with.
Thanks and
God bless.November 20, 2013 at 6:07 pm #77157pcl1029MemberHi, Don,
since your oncologist told you: “Secondly, although the report seems to me to indicate the nodules have grown, my Oncologist indicated the nodules were stable and he was not concerned about the minimal growth indicated on the report -” I will not attempt to do otherwise.I did notice in the past ,you may have kindey stones of other related problems (like pain or bloody urine) due to hydronephrosis was mentioned in your message. Hope everything is taking care.
In addition 1cm=10 mm.,therefore the smaller(mm) used is 10 times smaller than cm that the States and Canada normally used for measurement.
mL looks like a measurement of the volume (ie:10mmx15mmxthe thickness) of the tumor rather than the lengthxwideth only (ie:10mmx15mm);but I am not sure for that.
God bless.November 15, 2013 at 3:38 am #77156kwilson60613SpectatorMakes perfect sense to me. I have sought out a few different interventional radiologists as well as another oncologist here in Chicago who have agreed to take a look at his scans. I figure at this point the more resources I tap into, the better. My brother will also bring up this info and a few other questions to my dads current oncologist at his appt tomorrow morning…
November 15, 2013 at 1:47 am #77155pcl1029MemberHi,
please remember “interventional radiologist” and “oncology radiologist” are two sub-specialities of radiology; not every medical oncologist or even general radiologist know the details of what they are.
Be sure to ask the right person.God bless.
November 14, 2013 at 5:42 pm #77154kwilson60613SpectatorThanks everyone for the warm welcome. The helpful
Suggestions and positive words go such a long way. In regards to the suggestions made by PCL yesterday, I have forwarded them on to my brother, who will be taking my dad to his treatment tomorrow. He also happens to work in the medical world, radiology in fact, so I asked him to talk to one of the docs at University Hospital, where he works in Cleveland, as well as to the oncologist or nurse practitioner (it switches back in forth as to who they meet with each week) in Cincinnati. I am eager to hear what is said as far as feasible options are concerned. Thank you again to everyone for their responses!
KerryNovember 14, 2013 at 5:16 pm #77153lainySpectatorHi Don, we are not strict on protocol but on the home page are topics with explanations on which to use. Like INTRODUCTIONS, GOOD NEWS, MEMBERS CAFE where we talk about anything even recipes. We don’t ALLOW here, we are just grateful when they find us! So you are very welcomed and you have come to the right place. I can tell from your attitude this CC family is proud to have you and we are all here cheering you on. If I could have any wish in my life it would be for a magic wand to wave over all of you and say BE GONE to the CC. And we do like be kept up on your progress so write as often as you like.
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