December 2, 2014 at 5:27 am #85648
Thanks Marion…It’s taken me a couple days….but the tearfulness seems to be subsiding….and I’m truly feeling happier. I’m not quite celebrating….but I’ll get there. I know I have a reason to celebrate right now. The holidays will be a bit brighter this year. ))))
JulieDecember 2, 2014 at 4:00 am #85647marionsModerator
Julie…so sorry for coming on late. Celebration is in order. Enjoy your Holidays.
MarionDecember 1, 2014 at 7:17 pm #85646
Melinda B…..Thank you…..I am already looking forward to the next month with happy anticipation instead of dread. As for the singing of Silent Night…..as soon as I started to sing….I thought to myself, “What WAS I thinking?” I suddenly realized that there was a good chance I’d start crying, but made it through the first verse…and then, to my surprise, I found myself singing the third verse…and I wasn’t sure I could remember all the lyrics. …But…I did. I almost found myself singing another Christmas song, but left before I found myself deep in hot water. )) I”m so glad I sang Silent Night though.
Melinda A….Thank you for the offer to ask some questions for me at your next appointment. I don’t know if I have any “burning” questions….)))….but I’ll go back over my notes to see what my questions were. I think it mainly had to do with the 3 vs 6 months spans between CT scans….and if the 3 month scans really increased risk a “lot” to warrant spreading it out to 6 months. As you said….your husband’s labs were normal….and so were mine…so there’s not much to be gained from watching those for a sign of recurrence. The other issue I can remember was, why not do an MRI (which eliminates the radiation problem) followed by a CT three months later, followed by an MRI again three months after that…leapfrogging, so to speak? Is there some negative to doing that? In my mind….it would keep the every 6 month schedule for the CT Scan….but give some interior view of what might be going on half way through. Insurance “might’ balk at it…but then again….at a certain point, for me, it is peace of mind…and I’d used savings to pay for an additional test for a year or two. Am I being totally paranoid here?
Also,…thanks for the info on your husband concerning the creatinine/kidney function tests. I wasn’t dehydrated….but then again, I have since discovered that caffeine is tough on the kidneys (they didn’t want me to have any caffeine for 24 hours after the CT scan with contrast) . I “thought” ,mistakenly, that my Coke Zero was also caffeine free, but just discovered it is not. So, I will find something else to quench my thirst for fizzy drinks….and drink more water….and hopefully, get the creatinine back down some. I went back over old blood tests that were done when I went for surgery….and my creatinine at that time was 0.8. That was higher than it used to be…but I’d be very happy to have that back. ))December 1, 2014 at 6:00 am #85645mbachiniModerator
Congratulations on clear scans!! I am so happy for you and your family. May this news bring some comfort for you, especially through the holidays so you can relax and enjoy the blessings of your family. I wish I was there to hear your spontaneous singing of Silent Night…one of my favorites! Love, hugs and prayers to you!
Melinda B.November 30, 2014 at 6:33 pm #85644gavinModerator
Brilliant news Julie!! Thanks for that! Time to celebrate indeed!
GavinNovember 30, 2014 at 4:12 am #85643malinger2Participant
Hi Julie, I have been following you as your story and my husbands are eerily similar. Diagnosed with stage 4 in April, resection in May and finished up with six months of gem/Cis on November 5. Clear margins after surgery. Had a ct scan on Nov 24 but couldn’t use contrast as creatinine was 1.66. Scan looked clear but will redo it in 3 months. We saw the oncologist last Wednesday, the 26, and he said that John might have been dehydrated to cause bad kidney functioning level. He has been drinking a ton if fluids since then as we have an appt on Monday, with our surgeon and he will recheck labs, especially the creatinine. We will be referred to a nephrologist if kidney levels are still high, knowing that cisplatin is so hard on the kidneys.
Anyway, their original plan was to do a ct every 6 months as well, with lab work each month. This made me nervous since his lab work was all normal prior to incidental finding of cc tumor. I will ask about having a ct sooner as well but not sure that they will ok it. At least we will have one more in 3 months, using contrast, to show closer detail which they couldn’t get this time.
I’ll keep you posted tho. We have such similar stories, it’s uncanny. I stressed out prior to the scan too so I know how you feel. Scanxiety is very real and alive in so cal.
What were some of the other burning questions on your list. Maybe I can ask Dr. Singh at City of Hope and see what he says, since we’re so similar.
Glad that your scan was clear too. Keep drinking water. 1.3 isn’t too far above normal. Hopefully you can just hydrate more before your next labs.
Hope my post is mostly legible. Writing it in a car on my iPhone, and wanted to respond to you as soon as I could.
God Bless you, and all the posters, in this journey.
Melinda ANovember 29, 2014 at 8:09 pm #85642dukenukemMember
I was told by a good friend that this may not be at all about me, but something I would do or someone I would touch.
Aimee too had a tumor, but it was only the size of a softball that she had removed when she was about three months pregnant. The doctor had “one of those talks’ with me over the phone before the emergency surgery (she was already in the hospital for observation). Talk about a wake up call on Easter Sunday. Everything worked out fine.
So, no road map and no yellow stickies with instructions. Play the cards you’re dealt as best you can.
DukeNovember 29, 2014 at 6:32 pm #85641lisacraineParticipant
You have been blessed! I am so happy for you and your great results….celebrate! Hug those babies! I now have blood work and tumor markers every 10 weeks and if good we hold scan off till 3-4 months.
LisaNovember 29, 2014 at 5:10 am #85640
Lainy….I really expected to hear bad new…..and am so grateful that I was wrong. I need to listen to you more in the future…but scanxiety really took over this time.
Duke….Blessed indeed…and I know it. And, it isn’t the first time that I have defied the odds. I had a heart attack in 2002 of a type that usually kills before you get to the hospital. I decided then that God had more work for me to do.
Then I beat the odds on blood clots to my lungs from a DVT that hit during my first chemo. I walked around for a week thinking that the shortness of breath was side effects of the chemo. My GP had one of “those talks” with my husband and me while I was still in the hospital, one that she said she hated to do, but I needed to know that I could still die from this.
Back in 1979, I had a large (volleyball ) size tumor that caused a premature birth of our first son (he died two days later). Local doctors only offered me a possible surgery with a surgeon they knew…but it would take 6 months for an appointment. I found out about a surgeon at Mayo who was at the time the best gynecological surgeon in the world, set up an appointment and 6 weeks later, he operated, but first checked for a cancer for which I had symptoms..(negative) and then when the pathology came back, the tumor had undergone gangrene after being twisted and losing its blood supply. We went on to have another son, but if our first son had been born by c-section, which should have happened, he may still have died, and we would never have had our 2nd son, because the ob said that he would have followed the birth by a hysterectomy.
Blessed…you bet….a lot of heartache….misery….but I’ve always come out on the other side and each time I’ve felt that it was because God had more plans for me. Looking back, I can see when and how I was needed and what His plan was. I feel that the blood clots were a knock on the side of the head…God telling me that there’s a plan here….look for it. I just haven’t figured out what it is yet though.
Meanwhile, I forgot to share one thing……today, when my husband took me shopping (I rode in a wheel chair due to a pinched leg nerve) ….we went by a lone man ringing a Salvation Army bell. I noticed no one was putting anything in his bucket. I asked my husband to turn me around and go back….whereupon I asked the man if I could sit beside him and sing a Christmas carol. I sang Silent Night and after a few surprised looks on diners faces around us, I noticed a few smiles appear, and suddenly we had several people come forward and put money into his bucket. It was totally spontaneous, but a wonderful feeling. It isn’t the first time I’ve sung by the Salvation Army bucket, but this year and this time, it had a lot more of “me” in it.
Julie T.November 29, 2014 at 4:14 am #85639dukenukemMember
You are truly blessed and we all are cheering for you!
DukeNovember 28, 2014 at 11:47 pm #85638lainyParticipant
YIPPIE!!!! Julie that is all great news, I told you I felt good about the Mayo visit! Go home now and enjoy the rest of the weekend!!! YIPPEE!November 28, 2014 at 11:40 pm #10768
Today, I am around 9 months post diagnosis, 8 months post op and today had a check up for a 3 month CT scan and labs with oncology consult at Mayo Clinic/Rochester, MN.
The blood labs showed my creatinine (kidney function) has gone back up some…not what I’d hoped, but it is manageable at 1.3. I had a reaction to the CT contrast, with tightness of chest and difficulty breathing at the end of the CT, which started to resolve in about 5 minutes, but was scary.
Then we had a long wait until 2:50 this afternoon, when we met with mu oncologist here at Mayo. He said something which I don’t even remember and then casually said (with a smile), “….and the scan looks clean…no sign of metastasis. After that, I pretty much just wanted to leave….I had heard what I needed to hear, but settled down to go over the list of 18 topics (with subtopics) I had carefully typed and printed the night before. Yes…I had 18 topics…and yet, I realized I’d forgotten a couple other items I’d meant to cover.
One of the items discussed was how often to have scans as we move forward. I told him I was more comfortable with doing them more often as opposed to going out longer. He was of the notion that we could stretch to 6 months due to the radiation risk, but we agreed for now that I would return in 3 months one more time…and then we would stretch to 4 months a couple times….and by year two, God willing, we would revisit the 6 month interval. Right now though, I feel that I need my hand held just a bit more frequently.
Anyone on the boards have any current info on this? I will use the search function, but if there’s anyone lurking who has recently discussed this topic with their oncologist, I’d like to know what they were told.
His reasoning is that I’m in a “unique position” having had the cancer found earlier than most people do….at stage T2b and I was operable, giving me clean parameters and a reasonable decent chance at a cure….at least decent by CC standards. I have a 50/50 chance it won’t come back due to no vascular invasion, no lymph node metastasis or other metastasis, and no neural invasion….all with a surgical clean margin of 2.2 cm. I did 6 rounds of “so there….take that”, adjuvant chemo. So far….so good. Since there are few patients of CC in my category, we’re sort of charting our own way. While I enjoy being first at things….this…not so much. I’d really love to know that there is a tested treatment plan…spacing for CTs, etc…but, the oncologist said some of that isn’t likely to find its way into testing with CC.
So, for now, …..I am again grateful….for the chance finding of my ICC before it grew anymore and became inoperable…and for the aggressive surgeon who believes in her own abilities and desire to truly help her patients. Thank God for another Christmas to come…..the first since my diagnosis and the first of many more, I hope. And….thank God for giving me more time…..to be a daughter, a wife, a mother and grandmother to a little 3 year old boy and a new grand son coming in April 2015. Thank you for tomorrow.
- You must be logged in to reply to this topic.