cindy0519 Posted March 16, 2006 Share Posted March 16, 2006 After much worrying, praying and almost begging... Dad has finally obtained a second opinion. I mentioned in my last post that I was awaiting information on a "new treatment" that I wasn't sure was suitable for lung cancer, since then I have found that the procedure -radio frequency ablation -turns out it is not so new as it is routinely used for liver tumors but is relatively new to use in lung cancer. I reached the doctor who are the US "pioneers" of this procedure and they agreed to review Dad's medical records to see if he would be a candidate for this procedure. They currently do ablation on tumors of the liver, lung and bone (at this time we knew Dad had lung and bone tumors) to destroy the tumor, retard the growth and for pain relief. They reviewed all his medical records and called last Thursday and said he is a candidate!! So he met with them on Friday and he is now in the process of getting all the necessary "prep" work completed. The ablation procedure will be performed on tumor in the hummeral head of his left shoulder on the 28th. This is just in time - he is once again in tremendous pain and we have found that he is allergic to the morphine so pain relief is hard to come by. The pain is so intense that a week ago he passed out from the pain and had a hard time getting his breathing back to normal - his wife almost called EMS. He called the oncologist who he was scheduled to see the following week (after not seeing anyone since early Dec) and they had him come right in and ordered a new PET scan (he hasn't had one since Oct). The PET scan results are not good... the tumor in the lung continues to grow, the tumor in the arm appears to be growing as well despite all the cement and pinning and on top of all of this, he now has what appears to be multiple tumors in the liver and one in the kidney area. The "new group of doctors" has been amazing! They are stressing the importance of "do it now!"- really helping Dad to understand that to slow the growth of the cancer he needs to have systemic treatment (chemo) now. They have been great at being optimistic (without offering "cures" or "miracles") and have reassured Dad that he is not out of treatment options and plenty can still be done...but needs to be done NOW. We meet with the new oncologist (both medical and radiation) on Monday, in addition to getting a new breathing test, blood work and meeting with a orthopedic surgeon he will also be getting a brian MRI to make sure there is no mets to the brian that are not showing on the PET scan. Ablation of the lung tumor "may" be done at another point, but they want to put together a comprehensive treatment plan first - which based on the results of the new PET scan we now know needs to include treatment of the liver and kidneys. While things look a bit bleak with all the new activity and growth ....we are now seeing some "hope" and Dad is being no longer feeling like the doctors are just sending him home to die. Quote Link to comment Share on other sites More sharing options...
carolhg Posted March 16, 2006 Share Posted March 16, 2006 I am so grateful for the hope that you have received. Your father is in my prayers. Prayers Quote Link to comment Share on other sites More sharing options...
mamasbabygirl Posted March 16, 2006 Share Posted March 16, 2006 Cindy, I am so happy you guys have hope again. Please please keep us posted about this. I have read a bunch about RFA, but it seems to "experimental" and to my knowledge, your dad will be the first person on this site to have the procedure used. I am very curious, so please keep us posted. Praying for a miracle for you guys!! Quote Link to comment Share on other sites More sharing options...
Ry Posted March 16, 2006 Share Posted March 16, 2006 I hope the RFA is a possibility for him. There are other members here that had RFA and raved about it. We looked into it for my MIL at the clinic in Alabama but her insurance would not cover it (some do) so she went with radiation. Let us know how it all goes. Good luck! Quote Link to comment Share on other sites More sharing options...
dchurchi Posted March 16, 2006 Share Posted March 16, 2006 Cindy, I am happy to hear the Drs have a plan to help your Dad through all this. I pray he gets relief from his pain. Quote Link to comment Share on other sites More sharing options...
J.C. Posted March 16, 2006 Share Posted March 16, 2006 Glad that finally a treatment will be on the way for your father. Also hope for relief from the pain. Hugs Jackie Quote Link to comment Share on other sites More sharing options...
gail p-m Posted March 16, 2006 Share Posted March 16, 2006 Sounds like you found a great group of doctors. What a difference that makes when you're fighting a "beast" like this one. I will keep your dad (and you) in my thoughts and prayers. gail p-m Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 16, 2006 Share Posted March 16, 2006 Sounds like your dad is finally in good hands. Hoping for good results. Don Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted March 17, 2006 Author Share Posted March 17, 2006 While ablation is FDA approved for liver tumors it does not yet have FDA approval for use on other types of tumors, thus it is still considered by insurance companies to be "expermental". I am sure that insurance coverage is going to be a battle... but bring it on ! Actually the research consultant who is part of this "medical team" says that they are now pretty familiar with what terms to use and how to get things to work as far as insurance approval goes, so he has indicated that he will handle the battles as they come up. In fact, we have already encountered the first one. The insurance company wanted Dad to go to their faciities for his CT&Xray on Friday but the pulmonary doctor said.."no way" I will call them and tell them to stop tracking peanuts when we are tackling an elephant. And his staff ending up getting the approval while we waited in the exam room! I cannot believe the difference with these doc's. I flew to Az on Tuesday to be here for his pulmonary appointment and today the pulmonary Dr. called and said that he had given Dad's pain more thought last night and met with the "team" this morning (they do this each Thrus to discuss each patient and plan treatment)and they think Dad needs to take the Celebrex he prescribed yesterday twice a day instead of once a day. This would have never happened with the other group of doctors. They feel certain that they can totally destroy the tumor in Dad's shoulder with one treatment. He will need some reconstruction on the shoulder afterwards because of the amount of bone the cancer has consumed....but we can deal with that. I fully believe that God lead us here for a reason and I am internally grateful to the gentleman in Senator McCain's office who "lead me" to this path! I'll continue to update everyone on the progress we make with the ablation and things in general. Thanks everyone for your prayers and well wishes..it means so much and touches my heart everytime I come to this board! God Bless you all! Quote Link to comment Share on other sites More sharing options...
Mskim Posted March 17, 2006 Share Posted March 17, 2006 I am so happy your dad is getting some hope. I wish my step dad was a go getter so that my mom could seek another opinion and better care but it it just out of my hands no matter how hard I push. I pray his pain is relieved and that this new treatment is successful! Kim Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 17, 2006 Share Posted March 17, 2006 Cindy, I can hear and feel in your post, the relief and happiness. Sending prayers up for your dad and family. Please keep us posted on how dad is doing. God Bless and hugs, Karen Quote Link to comment Share on other sites More sharing options...
trishnmiller Posted March 18, 2006 Share Posted March 18, 2006 Wonderful news about the new team. This is yet another testament to the importance of taking scans to the source of the therapy you are investigating. Way to go! Trish Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted March 18, 2006 Share Posted March 18, 2006 So glad to hear that. Quote Link to comment Share on other sites More sharing options...
Don M Posted March 18, 2006 Share Posted March 18, 2006 Cindy: it sounds like the second opinion guys are a good bunch of doctors. I am going to see about having radio frequency ablation for a new tumor on my lung. The system uses robtics and is very accurate. I hope your dad's situation can be turned round 180 degrees and that he will have many good years ahead. Don M Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted March 20, 2006 Author Share Posted March 20, 2006 Don, Just curious where you are looking at having the ablation done? In researching this it doesn't seem that there are too many places that actually use this procedure for lung tumors, so I am curious where you are. Dad's tumor in the lung sounds very similar to yours... upper right lobe. However at this time they are "holding off" on the ablation of the lung tumor in favor of taking care of the more immediate issues that he is having, such as the immense pain being caused by the tumor in the hummeral head. Good Luck with your procedure!!! From what I have read about ablation it sure seems like a VERY good alternative for those who are candidates. Quote Link to comment Share on other sites More sharing options...
Carleen Posted March 20, 2006 Share Posted March 20, 2006 Cindy, I am so glad to hear the good news about your dad and the new medical team. It is so amazing and such a blessing to see what a good team of doctors can do. I wish all doctors could be like that. Quote Link to comment Share on other sites More sharing options...
LynneH Posted March 20, 2006 Share Posted March 20, 2006 Cindy, what a difference a caring group of doctors can make for you and your Dad! I am so excited to hear the hope in your voice. Lynne Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 20, 2006 Share Posted March 20, 2006 Oh Cindy, I am so happy you got the 2nd opinion, It certainly makes all the difference in his case. I know how frustrating it is when you have to watch him be in so much pain. But there is medicine does not have morphine in it. There is perisets, oxycotin and I know there is more. They have to find something to help him with pain management. My husband was not able to take morphine or the fentynal patch but the perisets worked great for him. Prayers sent to your dad. Maryanne Quote Link to comment Share on other sites More sharing options...
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