MarkVR

Hi all, long time since I've posted. Had a PET the beginning of May, showed some disease progression. They stopped the chemo and suggested I let my body recover from all the abuse from the chemo. Well, later that month I had some SOB and a chest x-ray showed some more pleural effusion on the right side. Did a pleurodesis to seal the right side and got a clean picture a week later. Basically the viewpoint from the docs is I'm terminal, 6-12 months. After a lot of discussion, decided to finally take our trip out west in our motorhome. Gathered up all the medical records I could and left mid June for San Diego. Meeting with the Navy hospital folks for a complete re-evaluation. Experienced a lot of back and side pain throughout the trip, but we enjoyed it. Had a another chest x-ray last week and it showed fluid on the right side again. Very weak and a lot of SOB, can't even take the dog for a short walk anymore. Getting very discouraged......PET scheduled for tomorrow, full body bone scan scheduled for Thursday, another appt Friday. Later, MarkVR

Hi all, I know there has been some discussion in the past regarding the Cancer Treatment Centers of America, but I would like to know if anyone had good or bad news. My options are getting pretty limited, I have a large plureal effusion again and am scheduled for surgery tomorrow at the Washington Hospital Center for a pleurodesis (take the fluid off the lung, and basically fuse the linings together). This is to reduce the pain and SOB. I keep hearing such positive spin on the CTCA, but is it worth it? Information, good or bad is appreciated. Thanks, Mark

Hello all: Sorry I haven't been active in awhile, been keeping very busy, I feel great, but I've had several PET scans, the latest on the 3rd of May. News was not as good as we had hoped. Showing some disease progression, but mostly centimeter or smaller spots. Doc let me start the sixth and final round of chemo, but said I shouldn't do the last two doses of Irinotecan because it seemed to be doing more harm to my blood than getting rid of the cancer. He suggests possibly starting Topotecan after letting my body recover from this chemo. Does anyone know of a clinic that specializes in SCLC? I'd like to find one somewhere in the US where that is the main cancer they treat. I just keep getting the feeling that with all the other cancers going on in the hospital I go to, they don't seem that proactive with my case. Any ideas? MarkVR

Don, Thanks so much for the words of encourgement and sharing your faith. I have been fighting sclc for over a year now and have undergone 12 rounds of two different chemo treatments as well as 35 sessions of radiation. PET scan last week was not as good as we had hoped and prayed for, but I'm still able to do almost anything I need and want to. Thanks again and congratulations. MarkVR

Rochelle: That is SO encourging. My last PET came back good, but still showing some active spots. I've undergone basically the same treatment, but am not at the PCI point yet. I am so happy for you and your mom, praise God. Keep in touch. Mark

Does anyone know what type of lc Dana Reeve had? small cell or non-small cell? MarkVR

Hi Paula, As others have said, welcome to our site, but sorry you had to find us. I was dx with sclc in May 05. You can read my history below. Best advice I can give you is to stay as positive as possible. Realize that SCLC is very depressing when reading about it, but good oncologists and clinics are very helpful and positive. Don't focus on the 'cause', I believe you and we all need to live life and trust in our God for help. There are many treatment options, but right now your mom needs a good caregiver. Sounds like she has one with you. Keep in touch

Hope and pray you and all of us have many more New Years. Mark

Hi friends, Sorry for being deliquient on posting. It has been an incredibly busy couple months. First my health. I'm still undergoing chemo, Carboplatin and Irinotecan. The first round beat my blood up pretty well, WBC was low, RBC low, platelets low, etc. We were able to complete the first round (3 consecutive Fridays) and then went to Michigan to visit family for Christmas. When I got back I had to take an extra week off from treatment to get the platelets back up. I've now completed 2 full rounds and seem to be doing well. The tumor on my back is significantly smaller, we use it as an indicator for the effectiveness of the chemo. I still have the fluid on my right lung, just in the monitor stage now. Docs are always listening to it though. I had a full body bone scan a couple weeks ago, came back negative, praise God. After the next round of chemo I'll probably get another full set of scans. I'm still working full time, and folks tell me I look pretty good. I've felt better the last several weeks than I have in many months. The busy part lately has involved visiting family in Colorado and Michigan, selling our house and moving into an apartment (love it), and getting ready for a grandson to be born. I'll try to stay in the posting mode more often, sorry for being gone so long. Mark

Hello friends, Well, the last time I wrote, I was almost done with radiation, 35 sessions, after 6 rounds of cisplatin/VP-16. I had been having a backache, which I kept telling my docs about. I thought it was a pulled muscle as I was still pretty active. Finally, on my last day of radiation, my medical onc felt a lump on my back on the rib cage which he didn't like. Sent me for another PET. The results were not so good, although the primary tumor was not showing any activity, there were a number of small, 1-2 cm size that were in different locations around the right side of my chest. I now will be starting another round of chemo, this time Irinotecan and Carboplatin. The plan is to do three rounds and then re-scan. I feel quite a bit of discomfort on my right side, but every ache and pain is now suspect. I am still very confident that I will beat this SCLC issue, but am concerned, as is my family. Kris is taking all of this very well, but as expected, we both have our weak moments. We ask that you keep us both, as well as our kids and their families in your prayers as we continue to deal with this. Happy Thanksgiving! Mark

Rochelle, So sorry you had to meet us this way, but you will find out there is a GREAT group of support folks here for you. I was DX with SCLC in May this year. It is a life changing time. Your mom needs your support as well as any other friends from church or friends. Don't be afraid to ask for help, you'll discover that folks really do want to help, but they don't know what you need. A friend of mine (also a cancer survivor) suggests getting a 'quarterback' to help you. Someone to coordinate all the things that need doing, but you'll forget about because you are busy taking care of mom. The QB can help with meal coordination, transportation coordination, anything else that needs doing. Maybe a close friend, relative, etc. You need to concentrate on the upcoming treatments and eventually a routine will settle in. Since I just completed six rounds of cisplatin and etoposide, I personally know how tired you can get. Allow mom to rest when she feels tired, you too. Our prayers are with you and your family. MarkVR

Hi friends: Well the results of the scans were so-so. The onc indicated the chemo had maxed out, the tumor is still there, but only slightly smaller than the last scan and so I began radiation on Sept 21. So far, so good, the folks at the radiation clinic are GREAT. I've completed 12 sessions, going for 35 total. I'll get another PET after session 20 to determine the effectiveness. Rad onc is hoping to finish off the tumor with the radiation. Side effects seem minimal, but I do have some esophagus issues, minor heartburn. I got some magic mouthwash from the rad onc to take, along with mylanta. So far it takes care of the problem. Does anyone know what other side effects I should look for? I seem to be getting a little tired, but after the chemo it seems minor. I also have a little bit of tingling in my feet and fingers. Should I worry? Thanks for all the support and advice, you guys are excellent companions in this ugly fight we have going. Mark VR

Side effects vary by person. I had 6 rounds of chemo (cisplatin and VP-16). Mostly fatigue after the 3rd day of chemo. Now I'm in radiation and feel pretty good, but today I feel a little tired. I gained weight during the chemo, but lost it after the fluids (water weight) went away. Appetite was so-so during chemo and then picked up. Now that I'm done with chemo, I'm the same weight I was before. Keep praying and take it easy. Mark

Hello friends, Just a quick update on my status. I've completed all 6 rounds of cisplatin/VP-16. Handled it pretty good, but it was rough. Had a follow-up CT scan last week and a follow-up PET two days ago. Have an appointment with my onc next Wednesday to discuss the results and the next course of action, which I presume will be radiation. After the last CT/PET, the tumor had shrunk about 50%. People at work keep telling me I look good and I feel good, but am anxiously awaiting the results on Wednesday. I'll post when I get the results. Until then.... Mark

Does anyone know what type of LC Peter Jennings had? SCLC or NSCLC? Thanks Mark VR

Well, I've completed 4 rounds of cisplatin/etoposide. Had a follow-up CAT scan on 7/1, (after 3 chemo rounds), results indicated 35-40% decrease in mediastinal tumor. Also showed the fluid on my right lung appears to be gone. Praise God for this great news. I'm scheduled for a PET scan (can anyone enlighten me on this test??) on 7/18, and then 2 more rounds of chemo. So far I'm tolerating the chemo quite well, but I'm certainly feeling the effects, fatigue, taste loss, etc. One other question, I seem to have trouble getting blood tests out of my mediport implant. Flushes fine, infusions work fine, just have trouble getting blood tests out. I also have a lingering minor pain where the catheter goes into the SVC vein. Anyone else have any issues with mediports?

Hello friends, Sorry I have been slow about sending posts. I was able to attend my daughter's graduation from SDSU in May. Had all my hair for her big day -- the next day it started falling out. Strangest thing though, only the dark hair fell out, all the gray hair stayed. Got back to MD on the 26th and went in for a mediport installation and then round 2 of chemo. Hospital inpatient again. Home for the Memorial day weekend, but felt horrible. Did have an opportunity to attend the local Survivors picnic, and the next week the ACS Relay for Life. Both great events. Felt good for the next week and just went (out patient this time) for round 3 of chemo. Much nicer to come home at night instead of the hospital. Weekly blood checks have been good, things are looking up. After round 3 I'll get some more tests to see what is happening. I'll try to be better about sending posts, I do read many of yours though. Mark

Kel, So sorry to hear of your loss. Our prayers are with you and your family. Mark VR

Update 5/18/05: Good blood checkup today so I can travel to see my baby girl graduate from college!! Back for round 2 of cisplatin and etoposide on 5/26. Dr. says after round 3 (21 day cycle) I get another CT scan and then discuss radiation. Thanks for all the encouraging words. MarkVR Hi, just heard of this site. I'm impressed. I was Dx in early May '05 with SCLC, presented with a large mediastinal tumor. Started chemo same week (cisplatin and etoposide), had brain MRI and body bone scan. Both neg, praise God. Just learning of all the options and issues. Will continue to look around for info on SCLC. MarkVR

Hi, just heard of this site. I'm impressed. I was Dx in early May '05 with SCLC, presented with a large mediastinal tumor. Started chemo same week, had brain MRI and body bone scan. Both neg, praise God. Just learning of all the options and issues. Will continue to look around for info on SCLC. MarkVR