Introductions
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- This topic has 20 replies, 13 voices, and was last updated 12 years, 9 months ago by hamptonsarasota.
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January 24, 2012 at 2:29 pm #55875hamptonsarasotaMember
Eriq,
Good luck with all of your future treatment. Dr. Javle seems to be top notch, I sent him an email outlining my situation out of the blue and within an hour he responded to me with his recommendations! Not a normal response from a doctor! Keep up your positive attitude and fight the good fight!January 23, 2012 at 9:33 pm #55874peggypMemberHi Eriq,
Just wanted to welcome you to the CC family. My birthday is also January 4. My husband was diagnosed Stage IV ICC in August ’08. He had surgery where they removed 70% of his liver, his right kidney, gallbladder, part of colon, and part of stomach cavity. Within six months, he had multiple tumors in the part of liver they hadn’t removed. He has been on three different chemo cocktails since March ’09. John has a very positive attitude and tries to take one day at a time. I believe attitude goes a long way in fighting this terrible disease. You seem to have everything in perspective, so my wish for you is that your pain will diminish and you will be able to enjoy your trip to Alaska. Keep coming back here as you will get lots of support from this site. PeggyP
January 23, 2012 at 7:18 pm #55873marionsModeratorEriq….congratulations on your 44th and looking forward to your 45th. Eriq, we don’t see bone mets too frequently on this site as it is more prevelant in an advanced disease stage. However; our JeffG, a ten year CC patient shared this with us:
“I have bone mets to ribs, left shoulder, and spine bone. I ‘m living almost pain free by taking Morphine 30mg every 8 hours and 4mg of Hydromorphone every four hours as needed for break through pain. You have to take without skipping doses or the effect of relief is not maintained. I tried skipping and ended up in hospital for three days for pain management and was up to 60mg at one point. As you know we all respond differently but this is what works for me; and I still stay pretty active. That patch some says works real well also.
God Bless,
Jeff G.See Other Post: Trying Zometa for bone pain to my ribs appears to be working, although I’m doing EFT and getting results as well form overall pain , depression, I Just Don’t have that general come and go ucky can’t be bothered attitude. Eating and normal bowel every 1-2 days. Haven’t seen that in years.
Last edited by JeffG (Thu, 07 Aug 2008 10:12:24)
January 23, 2012 at 5:45 pm #55872pamelaSpectatorDear Eriq,
I am glad to hear your pain is being managed better. I hope you get to go on your trip and enjoy it. I have read your entire Caring Bridge blog and continue to check it every few days for new posts. You have been through so much and my heart goes out to you. I wish you pain-free days and nights and a wonderful trip with your wife. Take care.
Love, -Pam
January 23, 2012 at 5:07 pm #55871wallsm1SpectatorDear Eriq,
Best of luck on the Tarceva, I hope it works well for you. I hope you get the pain under control. Enjoy Alaska, it is beautiful!!
Best wishes!
Susie
January 23, 2012 at 4:06 pm #55870lisacraineSpectatorEriq
My prayers are with you. You have been through so much already. I pray that God gives you peace and hope. Keep fighting, miracles do happen. This website is full of such wonderful, supportive people you will be comforted by the cc family. LisaJanuary 23, 2012 at 2:50 pm #55869mustangmortSpectatorEriq,
My prayers are with you as you fight to get the pain under control. Personally, I’m a huge wimp when it comes to pain. Good luck with your trip as well. My wife thought a nice 2 week trip would be great for me, so we are going in april, probably. Never been away for 2 weeks. I just pray that I feel well so that I can enjoy it. Listening to the waves on a beach is very very “healing” to me. I should have been born on the coast. :0)
Good luck, young man.
January 23, 2012 at 1:12 pm #55868lainySpectatorDear Eriqe, WOW! what a ride you have been on and I marvel at your great attitude which is the best RX combined with a winning Dr. Javli. I am hoping for you more pain control and for heaven’s sake STOP leaning over in cars! A belated Happy Birthday to you as well. Funny, I also am thinking an Alaskan Cruise this summer, been on a lot of cruises but never did Alaska! Good luck on the Tarceva and please keep us posted!
January 23, 2012 at 11:44 am #55867eriqnealeMemberOh, and I forgot to mention that I celebrated my 44th birthday on Jan 4. It may well be my last, and we had end helluva party just in case, but there’s also reason to hope that I will live to see 45…
January 23, 2012 at 11:42 am #55866eriqnealeMemberI was finally able to get in to see Dr. Javli at MDA, and it was sort of a mixed blessing. In early December, I broke a rib leaning over in the car to pick something off the floorboard (second such time I’ve had a rib break under similar circumstances) and the pain from that injury coupled with “new” breakthrough cancer pain, and I ended up flat on my back for a little over 6 weeks. In that time, I was finally able to get in to see a pain management specialist, and we’ve only in the last couple of weeks been able to get the pain under control.
Traveling to Houston from Denton (where I live, just north of the DFW area) was a trying experience with the adjustments to the pain management not quote worked out. But I was able to make it through a single day of tests and meetings instead of spreading it out over several days.
First, Dr. Javli told me that I was already in “overtime” for this cancer, meaning that in his opinion based on the spread of the cancer when it was discovered, I probably should have been dead back in November. So I guess in a way I’ve already beaten the odds. But in his mind, since we are already in overtime, let’s make the most of it.
I laid out three goals I had for working with him and the center at MDA:
1. I want to get the pain management under control.
2. I want to restore a good quality of life for the time I have remaining.
3. I want to be able to comfortably make several trips that we have planned overe the next 6 months.He said that he felt my goals were very reasonable.
Given my poor response to the previous chemo treatments I’ve had, he said that conventional chemo is probably no longer worth pursuing. He sent my tissue samples off for further gene testing and started me on Tarceva while waiting for the results of those tests (I had not been taking any chemo in the 6 weeks between my last CT scan, which showed 12 new nodules in my right lung). He felt that I would tolerate the Tarceva well, and there was a good chance that it would match the treatment outlined once the gene tests came back. And in another blessing, we didn’t have to fight insurance to get them to cover the Tarceva medication.
I’ve been on Tarceva for a week now, and I’m only just now seeing the signs of the beginnings of a rash on my chest. I’ve not had any diarrhea or any of the other symptoms sometimes seen with the drug. As to whether it’s helping, we won’t know until we do another set of scans. He specifically mentioned that the scans done at MDA will be used as a baseline for tracking treatment going forward.
Though my local oncologist isn’t apparently vey pleased with the choice to go on Tarceva, I’ve asked him to get with Dr. Javli and discuss things doctor to doctor and not rely on me as a middle man to translate or convey messages between them.
Dr. Javli did order a bone scan that I need to get done this week to see if the CC has already spread into the bones which he suspects it has. (My broken rib has not shown up on any scan or x-ray anywhere, so I’m sure they think I’m identifying the ne breakthrough pain as cancer and not a broken rib; I maintain it’s broken as I felt and heard the snap when I leaned over and it broke.) There is a tumor growing in that area, however, as I can feel the growth between my skin and the rib. Yuck. I also have another area that is starting to develop a similar pain, and I will go back to my local pain mgmt doctor and see if another round of nerve block injections would be increasingly effective or not.
I’ve felt better over the last few days than I have since I broke the rib on Nov 30. I have hope that I can resume a good quality of life that will allow me to make these last trips, including the Alaskan cruise n June that was supposed to be our 20th anniversary present, but we having to take it early. Last night was a bit of a setback in terms of pain, but I think it was an anomaly and not a sign of things to come.
So there’s my latest update. Crossing my fingers that my QoL continues to see daily improvements and my strength and stamina, or what I can recover of those, will improve as well.
December 22, 2011 at 7:33 pm #55865gavinModeratorHi Eriq,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear what you’ve been through. Wow, you sure have been through a lot! But I’m glad that you’ve joined us all here as you will get a ton of support and help from us all. And please don’t be afraid to ask any questions and we will all do what we can to help in any way. Looking forward to hearing more from you.
Best wishes,
Gavin
December 22, 2011 at 5:06 pm #55864tiff1496MemberI’m sorry you had to find us.
I’m 2 months into my fight with CC. We live in Alabama, but decided that MD Anderson was the place for us. We had an appt. in less than a week. We see Dr. Javle, he seems to be one of the best doctors.Good luck my friend.
December 22, 2011 at 2:28 pm #55863jathy1125SpectatorEriq-Welcome and sorry you had to find us. I am a CC survivor!! I was diagnosed with inoperable CC and given 6-8 months to live!! I was put in the immediate care of Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO.I am alive because of God, 2 strangers, and Dr. Chapman. My only HOPE was a transplant.
Please read my story at thetelegraph.com under christmas miracle. I will give you HOPE.
Good luck at MD Anderson.
Lots of prayers-CathyDecember 22, 2011 at 8:32 am #55862marionsModeratorEric….I like to follow everyone else in welcoming you to the club no one wants to belong to.
Dr. Javle at MD Anderson has seen several of our members and it may be someone you might also want to reach out to for a consultation. In order to expedite an appointment at times it helps to know the specific physician’s name.
Good luck and please, keep us posted.
All my best wishes,
MarionDecember 22, 2011 at 2:10 am #55861pamelaSpectatorHi Eriq,
I am really sad that you had to find this site. You have come to the right place. There are so many caring members here that will support you and you may find you have a lot in common with some. You have sure been put through the wringer. I am hoping any new treatment you have will be easier on you. Please come here often to ask questions, vent, or just to get some support. We are one big family. Take care.
-Pam
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