My mental downhill spiral started about two weeks ago when I saw my Onc two weeks ago, he told me my lung was worse, chemo wasn't working and to go find a clinical trial...
... That was it, I don't know how it normally works but I find it hard to believe that Onc's normally just tell you they are done your on your own finding a trial. As he was shoeing me off I flat out insisted he refer me to a pulminologist. Which he finally did with the side note that he didn't think it would help me any. Last Friday when I spoke to my therapist, who works closely with my Onc and Rad Onc, he was shocked and had never heard of my Onc doing this to a patient and was convinced it was a misunderstanding. He asked my permission to speak on my behalf to my Onc, rad Onc and head of research. I said fine, I would take any help I could get. This past Monday after two weeks of getting no where with trials I had a followup appt with my Onc, most likely my last appt with him. This time my Mom was there and she is not very happy about the situation. My Onc completely changed his tune saying that seeing the pulminologist would probably help me greatly, suggesting I see the Rad Onc again to do reduce the size of the lung tumor, and refering me to a differant Onc at the Mayo clinic than I usually see. He previously wouldn't even speak about radiation, saying I needed something systemic. Why didn't he do all this two weeks ago? The final straw was as I was leaving the office I asked for a copy of my CT scan from the hospital. I read through it as I walked to the car. It did say my lung was worse, but it also said that CT contrast wasn't sufficient in liver to accurately meassure the liver tumors, but they appeared to be calcified. It didn't mention any tumor in my colon or rectum!!! , it just mentions the colitis, but no signs of cancer. I know that a PET scan would better show metabolic activity, but my last PET scan showed two measurable tumors in my colon. So apparently radiation did work. What I don't understand is why would my Onc not tell me this little bit of good news while telling me my lung was so bad and chemo wasn't working. So, since my liver and colon are stable, doesn't it seem like a good time to do radiation on my lung to make me more comfortable while we find my next chemo?When I was first dxd it was a challenging case, doctors were wanting to be part of my medical team. Now that the challenge is gone and defeat seems eminent it seems like my Onc has lost interest and doesn't have time. I think I am done with him, I have lost my trust and respect for him. So I am going to see my Rad Onc next week and then in two weeks I have an appt with a new Onc at Mayo Clinic. After that depending on what my Rad Onc and this new Onc says I will make some decisions on my tx. I am about 99% sure I will either change to this new Onc at Mayo clinic or the Mayo Clinic Onc I have already consulted with.
Today I finally was able to get into the pulminologist. Had a chest xray, breathing test
, and then saw the doc. I failed the breathing test miserably, the resp therapist and doctor seemed shocked that I have had difficulty breathing for this long without anyone suggesting I use an inhaler or nebulizor. I told them I kept asking for a referal but all my doctors said it wouldn't help. The pulminologist came in and said "Wow, there is no way around it your situation just sucks!" Well thank you Captain Obvious! but the good thing is that she thinks she can help me. She had me start on two differant inhalers, One twice a day and the other as needed. I have used the 'as needed one' and it has already helped me greatly.So this is my update, a big upheavel with doctors and hopefully these inhalers will help me breath better and be more comfortable. I am also switching to a low dose fentanyl patch for pain control, hoping I can get back to my normal activities without the loopiness.
