Part 2: Clean so far (sort of …)
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This has been a medically busy week. Tuesday AM PET/CT at NY Presbyterian, then noon appointment with Dr. Josh Sonett, the lung surgeon who did a tricky left lung procedure last spring. He talked with radiology, who didn’t see anything seriously illuminated on the PET/CT. This was a routine followup. Wed am appointment with Dr Abby Siegel, onc. The formal radiology report was now up and she’s a VERY careful reader. She saw something about a very small right lung mass that had grown from 4mm in 10/2011 to 9mm now. She got Dr,. Sonett on the phone right away to discuss this new finding. Bottom line, get another scan, a CT done stat the same day. I went back to Dr. Sonett’s office to see whether we should go back to MD or stay in NJ. He very quickly decided that it was to be surgery for me (March 7) and I completed almost all the pre-admission testing yesterday. All I can say for this huge hospital (29,000 employees, 6000 of them doctors) is they can really cut through the bureaucratic BS when there’s a need, and knowing where I live, they do handstands to avoid me making any unnecessary trips there. I love the care they’ve given me and they never cease to amaze me with their responsiveness. A truly wonderful hospital.
We’re still pursuing the elevated CA 19-9 and bili numbers, and a new blood test was ordered. Apparently, inflammation in the pancreas without cancer can also cause elevated numbers and slight pain/discomfort in the right kidney region. The scans both show no evidence of cc returning at this point, which is always great news.
My hope is this is an adeno carcinoma, unrelated to cc, and a new primary, but only a final path report in March will tell what the deal is. CC is not all bad. Had it not been for cc, the lung tumor removed from the left lung last year and this new one in the right lung would not have been discovered until much later, since there were zero symptoms with either, and wouldn’t have been until I was in dire straights. Perverse as it may seem, this all still belongs in the “Good News” section. At least, that’s how I’m reading it.
Kris, I’m with you on the cure deal!
Margaret, I think I just have to be more patient. I worked years in a world driven by numbers, and just find it unnerving when they don’t mean much. This cancer just makes us more than a little paranoid!
Thanks again for all the thoughtful responses.
Johanna….it is nice to hear from you again. Do you know what caused the bleeding, ulcer, varices?
The paracentesis was in November. Are you experiencing any abdominal swelling presently?
Is your weight stable?
Good luck with the visit and please, keep us posted. We love hearing from you.
All my best wishes,
MarionI would say to not focus so much on the ‘numbers’ but rather how YOU are feeling.
I remember a time when Tom was in the hospital and his ‘on call’ doc was so worried about his Alk Phospate number. I said “Was it 958?” and she said “yes, how did you know?” My reply was “Because at the highest it was 1958, and 958 is VERY good for him. He does have Cholangiocarcinoma and his Alk Phosphate may never be ‘normal’ but 958 is the lowest it’s been in 3 years, so that is GOOD!” She walked away….muttering that she was going to check into his history!
Tom’s CA-19-9 markers were all over the place. There are many things that can cause them to go up. An infection anywhere in the body. A recent surgery such as a tube exchange. Low red blood cells, etc. And with Cancer, we know that the CA-19-9 is going to be higher than for someone without cancer.
So again, my advice is to not worry about the numbers, let the doc’s figure it out. I know that Tom too worried about what his numbers were and then I’d compare them to previous results and show him that many numbers were improved over the last results and how all the numbers were up/down just like a roller coaster!
Go with God, and prayers are coming your way from Wisconisn and also Tom is sending prayers from Heaven!
Hugs,
MargaretJim:
I haven’t been on this site for a few days, so missed your post until now. I am so sorry you have to go thru this worry of “what if”. I pray every night that a cure can be found for this horrible disease.
I will continue to pray for you and all of us with cc. Hopefully the new studies I’ve been reading about will yield a possible cure soon for all of us.
KrisHii Johanna, while I can’t help with your questions I just wanted to say how nice it was for me to see you post again. I am sorry about your ‘bumps’ in the road but at the same time glad you are feeling good. The best news is that the tumor is stable. We like that word! Please keep us posted and continue to feel good!
Hi,
May I ask where was the GI Bleed occur.Is it near the esophagus or in the colon? What are the numbers that high enough for your concern and how much?
How’s your blood pressure? Any hypertension?How high is your blood sugar recently? Why had both CATscan and MRI done within such a short period of time?
If you want to ,you can email the ” impression” portion of the scan report,and I can take a look to see if I can be of help in decreasing your confusion? It may also be helpful if you can send along with the last available MRI “impression” statement for more understanding of the situation.
I think you know by now I am only a patient like you and not a doctor.
God bless.Hello -right now I am living in a state of confusion. I had a CT scan in late December and an MRI last week at Johns Hopkins. Hopkins told me my tumor was stable, I had chemo radation since March. The CTscan shows multiple new lesions in the liver!
My numbers have been rising so I need to go on chemo again. I have not had any treatment since 3/14. I new I would go on Gem/Cis again.
I am feeling pretty good. I had a GI bleed and a paracentesis in November. My appetite is great and I am thankful for that. The interventional radiologist and my Onc. should talk this week.
Any ideas of what questions I should ask? I have a copy of the CT scan results and will get a copy of the Hopkins results soon.
Anyone ever had this before? Please write and tell me what happened.
Thanks to all of you in advance! Fondly, JohannaBob, your guidance is invaluable, since you have walked the walk. Thanks for your input. I am slowly learning to live with this monster, and I too, will not let it take over my being. I accept the atta boys, and think you likely deserve way more. I have learned to hate cancer of all sorts, but most specially cc! I guess I need to put the most weight on the PET/CT scans, and just keep chugging along.
Jim,
First, kudos for approaching three years. For that you are hearby awarded three “atta boys”! Now as far as the rise of the CA19… well, here’s my approach. I have been having various symptoms including fluctuating CA19 numbers for much of the last 5-6 years. Even currently after 15 years I have occasional symptoms indicative of recurrence. The various tests show nothing. The docs have no answers. So… I refuse to allow this evil disease to live rent free in my heart or mind. My best revenge against it is to live well each day. “This is the day the Lord hath made. I will rejoice and be glad in it”! May God grant you peace…bob
eli……I would assume that physicians are hesitant for patients to undergo chemotherapy when in fact they are not sure as to whether it proves to be helpful. With such varied responses to the current available, treatments – how do we know as to which one will kill off existing cancer cells? These studies need to be conducted and evaluated. (Some clinical trials are underway.)
We have noticed an increase in post-resection chemotherapy however; do we really know the benefits of such treatments?
All my best,
MarionEli, my dear wife reminded me about the quality of life during chemo, so I think we’ll approach this with some caution. I’ll let everyone know after I see my onc mid-February.
Jim Wilde wrote:I think my visit with the onc next month will include a question about the wisdom of doing chemo again.Jim,
I’m curious to hear what your oncologists has to say about your idea.
I often wonder why doctors don’t use “maintenance chemo” to manage CC patients in remission. Say, two cycles on an annual basis as a preventive measure. Was there a clinical trial that ruled out preventive chemo for some reason? Such as… a concern that cancer cells might become chemo-resistant too soon? Is it a cost issue, i.e. insurance companies not willing to pay?
Good luck, and please do let us know.
Best wishes,
EliJim….We know that the occurrence or recurrence has to be substantiated via
symptoms, lab, scan, open or exploratory surgery either, on it’s own or in combination thereof.
We also know that CA 19-9 on its own does not carry any value as it can rise due to numerous reasons. With you however, it is different in that those values became a concern of your physician and ultimately led to the diagnoses of this disease.We also know that due to the microscopic cell structure this cancer can be evasive to screening (CT, MRI. etc.) until formation of detectable nodules.
Question: would open surgery (which carries numerous risks including, angering the cancer) be able to detect an occurrence.
Chemotherapy: would an oncologist consider chemotherapy at this point? What field of radiation?
Radiation: due to non visual nodules unlikely to be offered.Waiting out to see a possible downward trend would be my choice at this time.
All my best wishes,
Marion
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