First scan
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Catherine,
Thank you for the link, it answered alot of my questions.
Dr Fung said he is taking Rich’s med records and scans to the multidisciplinary liver tumor group and is asking Drs Baker and Dr Pillai to join in at the conference to look at them to. Then in 1 month when Rich has another CT scan they will look at that one and decide if we should come to Chicago for a visit to talk to everyone.
We don’t have a radiologist here that does this type of thing so we will have to wait intill we go there. I think it’s very nice of Dr. Fung to be doing all of this for us considering he has never met us and this all started by me e-mailing him and asking him to look at Rich’s scans and then just talking to him on the phone recently. He seems like a nice and caring Dr. It makes us have some hope.
Hi ,
The second time around, more fatigue since she did the oral chemo (xeloda) for 2 weeks before and after. And, a little soreness/bruising in the groin area. I am a bit surprised that the ONC spoke like that about it. Compared to chemo, Mom said she would do it anytime. It is done as a outpatient procedure usually. And, we were fortunate that the few months of fatigue have now given her years of treatment-free life. She still has her port periodically flushed and gets scans every 6 months.
Mom’s ONC was not very familiar with CC- we lucked out that the interventional radiologist took the lead and truly saved her life. That is the benefit of being where there is a team reviewing the case. Below is further info on Y-90. Can you ask to meet with the radiologist?
Great to hear the tumor marker coming down !
http://www.sirtex.com/us/patients/about-sir-spheres-microspheres/frequently-asked-questions/
Take care,
CatherineCatherine,
Thank you for replying. Other than the fatigued did your mom have any pain while she had the Y90 or right after? The reason I ask that is Rich’s onc said Y90 is painful and can cause alot of side effects.
We spoke with Dr Fung and we are finishing the this round of chemo-if Rich can he didn’t have chemo this week he had to have another blood transfusion-than we have another CT scan than see about going to Chicago to see him and discuss options, so we are looking at about 1 month out maybe doing a road trip. On the plus side Rich’s C19-9 tumor marker test went from 635 to 243, I think that’s good.
Hi,
For us, the Y90 was a the perfect option. for Mom. Although she was fatigued for a month, it allowed her afterwards to go without treatments and live a normal life.
Best wishes to you and Rich-
Catherine
Rich had to go in last Thur for a blood transfusion his platelets were 16, since then still not feeling well,thinking about stopping chemo as it is really making him sick.
Did hear back from Dr.Fung he said after looking at the scans maybe Y90 or Cyberknife.He did say the lesions in his lungs did look like cancer but were very small and chemo should take care of those and they shouldn’t bother him. He wants me to call him back.
Any thoughts on these? I’m not sure which way to go, continue with chemo intill it stops working and try a clinical trial,stop chemo right now and try something else. All I know is Rich says the way he feels right now isn’t living.Hello Richnkim,
Definitely get several opinions from oncologists and if one is not receptive to what you are requesting such as molecular testing, find one who is. Gem/cis is the immediate “go to” it seems for oncologists who should be treating differently on a case by case basis. I had the same experience of no clinical trials unless gem/cis is tried and I did not like that response. Doctors are not there to support or give input on nutrition and supplementation and I had to make the effort and do the research for what is best for my mom. I don’t even share the information with the doctors as some would downplay it. One suggested for her to eat anything as long as it’s in small quantities, which I disagree. She can’t just eat anything. You are doing the right thing in looking into vitamins or complementary care for your husband. Also, surgery does not provide guarantees and patients still had to undergo chemo.
Have you tried giving him fresh ginger to chew for nausea? It’s a good idea to test it whether it works or not. It should be chewed for the juice and spit out. Maybe that helps with stomach. Again, everyone is different and one person it may work another may be sensitive. That is my discovery on this journey.I can understand why they wouldn’t want to do a liver resection if they thought it was in the lungs too,but I have two radiologists saying two different things so I wish they would do a lung biopsy and find out for sure.
Just my wishful thinking, I should just enjoy the time we have and be thankful for that.
Thanks Marion, I thought I remembered something about lung surgeries, but I wasn’t sure, so glad I put that question out there to you. Just to clarify…..when you say “wedge surgeries” are you talking about wedge surgeries of the liver or lungs?
Julile
Julie….re: “I know of people personally who have had far larger tumors resected and I “think” I remember several who have been on here who have had resections with lung nodules. Marion…..can you confirm that? “
I believe that surgeons won’t resect a metastatic patient. Some were resected but later developed lung nodules due to systemic disease progression. We also have reports of wedge surgeries once nodules appear in the lung.
Hugs,
Marion
Kim,
Sigh…..I am one of those “realistic” people like Rich. It did get better, but took a while. I believe that once Rich feels like there’s a plan he can did his heels into, he will feel more like fighting. Right now, this is all so new and he is facing his mortaity sooner than he ever thought he would. It might help him esp to meet with someone who has felt as he does right now. Another reason for us to meet?
My husband (name is Allen….though I call him Tup): He did not know the nodule was there….was found by accident. The ENT doc said it didn’t “look like anything”, but then said, “but I could be wrong.” So yes, it is suspicious and we’ll be waiting for the pathology on pins and needles. Tup is trying to stay calm, but I know he is stressed over it.
Are Rich’s stomach problems more the nausea feelings, or heartburn type problems….or both?
Same here with the snow and cold. We had such a nice bit of warm weather in February so it’s really hard to have to deal with this current weather. The good thing about it is that it won’t last for long and we’ll be mowing grass and watering flowers. I’m ready for some nice sunshine and good, old fashioned thunderstorms.
Julie
Julie,
Right now Rich’s stomach is killing him he is on prilosec,anti-nausea pills,tums and today his normal dr was gone when he went in for chemo so the physican asst gave him Reglan but when I read the info guide it says you can’t take this drug if you take high blood pressure pills, anti-anxiety med or have diabetes which Rich takes all of these. So I guess I’ll call over there tomorrow and talk to someone, I don’t know why the pharmacy didn’t catch this either.
Rich’s mood is terrible in my opinion, he says he’s just being a “realistic” and I need to face the fact that he might not make it. You can’t believe some of the stuff he has been doing to make sure we are “in good shape” when he’s gone. I don’t think it helps not having a dr who doesn’t think your gonna make either. I’m hoping the warmer weather coming will lift his mood.
He came home from chemo tonight really tried and it doesn’t help that after 5 hours of chemo he goes back to work either. I try to get him to come home on those days but he says he wants to stay normal as long as possible, but his blood work today shows he is getting worn down. He is on day 2 of this round.
Hope your husband does good on his surgery Monday-the nodule isn’t suspicious is it? Hope your feeling better too. The weather has to start getting warmer soon, I’m getting sick of this snow and cold.
Kim,
By any chance, was Rich given Prednisone back when he had that crud 4 years ago.? The reason I ask is that it was Prednisone that set off my type II diabetes. There’s a tiny little line at the end of the warning pages for side effects. It simply says that sometimes the use of prednisone can cause diabetes insipidus which usually goes away when the drug is discontiinued. However, sometimes it does not and instead changes to diabetes mellitus .
Yup…..I had a doctor in training also…..but I think it was close to the start of his fellowship and he was covering everything he could think of as I’m sure they are scrutinized by their overseeing staff doctor very closely in the beginning. So, that’s why he took so long. Plus they were still trying to diagnose what was wrong with me even though the local oncologist at the time had already diagnosed it as ICC. I had the trainee for two years and really liked him after he seemed to settle into things and was really upset when he graduated the fellowship. I hated the next guy they assigned to me and we eventually pushed for and got another oncologist. Visits with other doctors up there at Mayo were more like 45 minutes. One appt went over that time period and the doctor mentioned that he had to “move on” to the next appt. So, apparently 45 min is about what they usually allot. Back in 1979, I went up there and spoke with a top notch surgeon about a problem I had…..he was listed in a book for one of the two top gynecological surgeons in the world. He spent about 4 hours talking with us the first day…..and I became aware that he had actually memorized my home doctor’s file , which was about 3 inches thick. Wow!!! I’d like to think there are still doctors around like him.
As for Dr. Zenk in Dubuque. I would just call and see if he is still there or not. I believe he was part time and thus, may not have had a picture up on the wall. Let me know what you find out if you call.
I’m much better today. Stomach really didn’t feel good last night even when I went to bed. I tried a Tums, but that did nothing. This morning, I felt the same as soon as I woke up…..got dressed and then it hit…..the dry heaving. Through the Gem/Cis, I never actually vomited…just dry heaves…a LOT. And….yes, the nausea would hit about three-four days after the infusion, though the dry heaving would be right after I’d get out of the shower or before I went to bed at night. This morning, once I dry heaved (and it wasn’t as violent as it has been in the past) then I was just fine. The awful feeling in my stomach went away and I’ve been okay the rest of the day. That is how it has always seemed to go in the past as well…….stomach is gnarly until the heaving happens and then, poof, it’s like nothing is wrong again.
So…..next week, I should be getting back to normal (I have the drug infusion every day this week). My husband is having surgery on Monday, but he should be doing better in a few days….having a nodule removed from the back of his tongue. They said sore for a few days….or not even that. Where is your husband in his current round…..day one….day eight?
Julie
Julie,
Thanks for getting back to me. I know that I have seen that Dr. David Zenk at Grand River Group before, even when I pull up all the pictures of the drs there his doesn’t come up.
As for the diabetes it makes me wonder for Rich if that isn’t when all of this started for him 4 years ago. One summer he had a nasel kinda cold all summer long and then he wasn’t feeling good and started throwing up went to the ER and his blood sugars where thru the roof. They put him in IC for 2 weeks trying to get them under control and came back saying that sometimes a virus can make someone type 1 diabetic. Since then he’s been giving himself 4 shots a day intill the last 2 months then all of a sudden low blood sugars. We asked his dr and all he said was cancer works in funny ways. Just makes me think maybe 4 years ago was when this might of started to happened.
Wow! you 3 1/2 hours with the dr at Mayo I think we might of gotten 45 min tops. The first dr who came in was a dr in training who took all the info and then the dr came in and said I agree with drs in Dubuque go home and do the chemo and if you want you can come back up here in 2 months for the scan or have it back there. End of story. We walked out of there thinking it was such a waste of time going there.
Yes it would be nice to get together we will have to figure out between yours and Rich’s chemo days. Rich gets his on Wed so by Fri he feels lousy. It sounds like you feel lousy today. I hope you feel better tomorrow! and thank you for all the info you are a diamond in the rough.
I’m going through a chemo week for this other cancer, so bear with me. I’ll try to answer your questions and make a couple comments.
The doctor in Dubuque is in the same practice where you are right now (IF he is still there……though it’s only been two months since I spoke with the receptionisht there). His name is Dr David Zenk 563-582-1881 (I think that is the right number)…..at 1500 Delhi St. His name does not appear on the website but obviously I had spoken to a receptionist who confirmed that he was working there early January. I never did meet him personally to see what his personality was. I was interested in the fact that he had graduated with honors from MED school and had some Mayo training.
Diabetes and Blood Sugar: I have been type two diabetic since 2002. I discovered in reading that blood sugar lows sometimes occur with liver cancer and an unexplainable blood sugar low is a sign of liver cancer. I had the experience myself…..with a low of about 40 something. It took a LOT of sugar and time to get the number up to 88. Six McDonald choc chip cookies and two large glasses of OJ later ….I hit that 88 number and it stayed there for quite a long time. That was a Friday. My tumor was found the following Tuesday.
As for the steroids …yes, they do increase blood sugar…..but only for a couple days or so around the time it’s given. Mine would often climb up to 300-450 during that time. Normal amounts of insulin wouldn’t bring it down either. With your husband’s tumor still there and obviously affecting the liver’s production of glucose output, it makes some sense that the steroid wouldn’t have as much of an effect as it normally would. The effects of the tumor on your husbands are counterbalancing the effects of the steroid apparently.
My GP confirmed the above when I mentioned it to her.
When I went to Mayo the first time, they did not run any additional tests of their own either. We met with an oncologist fellow and then his supervising oncologist for about 3 and a half hours and then waited until 4:30 to meet with a surgical consult. I was in surgery the next day before noon.
It seems that the oncologists are often only pushing chemo. The last time I had a recurrence, the oncologist at Mayo did not even call in a surgical consult….just immediately said I needed to do chemo. On the way home, we realized that we both were suspicious that he hadn’t called a surgeon for a consult. So, I called my previous surgeon there, made an appt directly with him. He looked at things and told us that it was indeed operable, but he recommended having a microwave ablation instead due to the location and size. He also said that the other place the radiologist was so “concerned” about, did not look like cancer to him. (there were two locations , one in each lobe, that were of “concern”). That second location was along the resection line of the first and second operations I had. He said he could be wrong, but he knew what he’d done “in there” …used some sort of material that is left in to control bleeding….and he felt the scan images of concern were due to healing from that. He checked size from the previous scan….and lo and behold, it was actually smaller on the later scan. Uh…..hello…cancer grows. When the IR guys did an ultrasound, they looked at it and two of them both said it did not look like cancer to them either. Two radiologists reading the two scans……the first…..no concern…..but the second was sounding the warning. They make mistakes, but they don’t want to miss anything either. It’s up to the oncologist to figure out the best way to proceed. In the end, I had one confirmed tumor….it was classic shape and characteristics and it was ablated. Moral of the story…..question EVERYthing no matter how much of a big shot the doctor is.
lI’m glad to hear that you have reached out to Dr. Fong so quickly. If he was willing to have you send the scans etc to him, then that saves a lot of time and travel.
If you are interested……the drive to Cedar Rapids, as you probably know, is about and hour and a half…not too bad and HWY 151 a really good road now with the 4-lane. My new doctor here is Dr. Jenigiri and he really does seem to be compassionate and has plans in case the CC comes back again or the times comes with the drug I’m getting for the MDS (Myleodysplastic Syndrome) stops working . He is thinking ahead. My previous onc had pretty much written me off. On Dr. J’s bio it says that he has previously won a “compassionate doctor of the year” award, though I don’t know what organization that was through, but it gives some indication as to his personality, I was hoping he was a combination of compassionate and forward thinking and I believe that’s what he is. At the very first meeting, he mentioned getting “another” Foundation I test if the CC returns again. He works at the PCI building in CR…..Dr. Bharat Jenigirl, hematology and oncology phone 319-397-2900. He would be an excellent “local” doctor for your husband.
Glad to hear that you’ve heard back from MD Anderson as well.
I still do not understand why there is a refusal to operate when the lung nodules are unconfirmed as cancer and there is disagreement between radiologist. Concerning for cancer mets and BEING cancer mets are two different things. The liver tumor doesn’t sound “that large” ….mine was 5 cm….not that much different and if it isn’t wrapped around or too close to any arteries….it should be operable. I know of people personally who have had far larger tumors resected and I “think” I remember several who have been on here who have had resections with lung nodules. Marion…..can you confirm that?
Must go….not feeling 100% tonight. Any other question you have…..I can give you what I know from personal experience anyway. And….if you and your husband would like to meet sometime…..my hubby, Allen, said that he was willing to drive up there. YOu’re VERY close to Petosi, WI, where his favorite beer is made. LOLOL He got a little more interested when he saw that on the map. LOLOLOLOL
Julie
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