stand4hope Posted July 1, 2004 Share Posted July 1, 2004 Dave, You haven't posted for 10 days. I miss your posts. Get back here and talk to us. Peggy Quote Link to comment Share on other sites More sharing options...
dave s Posted July 5, 2004 Share Posted July 5, 2004 Dear Peggy and all others who have inquired, Thank you so very much for your concern. I want you all to know how much it truly warms my heart to be missed by my friends here. You've all literally brought tears to my eyes. I'm sorry to have been AWOL. Things have been difficult for a while now. Nothing insurmountable just a combination of "Murphy's Law strikes" I guess. The whole story is to long to put here in a brief post, but it all started with a mistake in the analysis of some recent scans I had. When the radiologist did a comparative analysis he used a set of scans from 10 MONTHS ago instead of 5 WEEKS ago. Due to the specific time frames involved, the inescapable conclusion was that my IV C therapy was a dismal failure. Everything was down hill from there of course. This was just one bump in the road along the way. As I previously mentioned to some of you I needed some time off from the boards here. I took the recent passing of some of our friends here rather hard and needed some healing time. I have a lot to talk about and things are much better for me now. I'm scheduled for a "Doppler" exam of my inferior vena cava tomorrow. This is to determiine if I have a blood clot which was suggested on my most recent CT scan. I also have recently developed swelling in my ankles which would be another symptom of a restriction in my IVC such as a clot. I'll close this out for now and try to get caught up with the rest of the boards. Then I'll come back here. Thanks again to all of you dear, dear friends. You all mean a great deal to me. Dave S Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 5, 2004 Author Share Posted July 5, 2004 Dave, I'm so, so, so glad to see you back. I was pretty worried about you. I know you told me you were going to be off the boards for a while, but that was weeks ago, and then I saw you posting quite a bit after that in the alternative therapies thread, so I thought you were back - and then you disappeared again. Anyway, I'm sure glad you're here. Does anyone have your telephone number so we can check up on you if you disappear for too long. Ry keeps everyone's phone numbers that's willing to give them to her. She doesn't bug anybody of course, but when we all start pushing, she'll call to check on you for us, and for herself, too. I didn't quite understand your statement about the IV C therapy. Did it mean that it appeared to be a failure because of them comparing to the wrong scans and it really is successful, or did it mean just the opposite? I was a little confused. Also, I'm sorry to hear about that swelling in your ankles. Is it making it difficult to walk. You'll have to excuse my ignorance again, but I just don't know as much as some others do. another symptom of a restriction in my IVC such as a clot What does that mean? Are you referring to the IV C therapy, or to something else? If you don't have time to write back, I understand. But please let us know how the rest of your tests go and what is being done to help you. Many prayers headed your way, Peggy Quote Link to comment Share on other sites More sharing options...
karenl Posted July 6, 2004 Share Posted July 6, 2004 Hey Dave, good to see you again!! Glad you are feeling better - does the discovery about the mix-up with your scans mean that the IVC is NOT a dismal failure after all?? Will be looking forward to hearing more from you. All the best Karen Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 20, 2004 Share Posted July 20, 2004 Dave Hello Again. Just wondering how you are. Miss you elaine Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 20, 2004 Author Share Posted July 20, 2004 Elaine, That's amazing - we're having the same thoughts. I've been thinking about Dave off and on all day. He said he would be back to give us more details, but he never came back. I hope we hear from him soon. Lisa O - you got any info on Dave? Peggy Quote Link to comment Share on other sites More sharing options...
dave s Posted July 20, 2004 Share Posted July 20, 2004 Hello my dear friends, Coincidentally I was just trying to get caught up on the messages when I saw this thread pop up again. I've been pretty much out of commission for a while now. I've had a lot of pain management problems and have erred on the side of being over-medicated (non-functional). I'm now back in balance and I think I can function again. I should probably try to let you know what has been happening with me, so here goes: I started having a lot of abdominal problems about a month ago, frequent vomiting, extreme bloated feeling, inability to eat without becoming sick immediately after, lots of upper right abdominal pain, inability to sleep for more than an hour and a half (due to pain), and increasing upper left shoulder pain. I tried oxycontin but each time I took it, I couldn't keep it down. I tried the patch but I just didn't get relief from the pain. Finally I asked for a CT chest and abdomen with comparison to my most recent scans from 5 weeks prior. They screwed up and compared the exams to some old ones from Sept. of last year, so of course they showed significant progression and deterioration. My oncologist of course said "well you'll have to admit that your IV vitamin C is a failure, right?". Reluctantly I had to agree. The problem is, I had such high hopes for the IV C that this was a real blow to me emotionally. After I calmed down I got copies of the reports and started to dissect them one sentence at a time. That's when I discovered that they had used the wrong exams for comparison. At about this time I started to have significant swelling of my feet, ankles and genitals for the first time. My oncologist thought I might have a blood clot in my inferior vena cava (IVC). So he sent me for a Doppler ultrasound exam of my abdomen to find it. The Doppler was inconclusive. It showed slowed blood flow but no clear indication of a clot. So I started on blood thinners (Lovenox shots twice a day for 5 days and coumadin pills). I'm still trying to get the coumadin regulated properly. The coumadin should prevent the formation of any further blood clots and any existing clots should gradually be absorbed (hopefully without incident). During this same time I have started on Iressa. I've been on it for about 2 weeks and I am starting to have side effects already. Oh goody! These latest scans did show growth of the mass on my right adrenal gland. The Doppler ultrasound indicated that the right adrenal mass had grown up toward the inferior vena cava and was probably pressing on it and disrupting the return flow of blood to the heart from my lower body. That would explain the swelling problems. So I have to keep my feet elevated and stay on the blood thinners. My medical oncologist sent me to my radiation oncologist to see about radiating the adrenal mass to try to shrink it and relieve the compression of the inferior vena cava. So for the past week I have been getting set up for the radiation treatments. I get the first real radiation treatment tomorrow (number 1 of 12). In the meantime I have gotten my pain issues under control finally and I now sleep through the night again (thank goodness). The bad news is I have had to stop all of my vitamin C IVs and all other anti-oxidant therapies until sometime after the radiation treatments are finished. I haven't yet decided how long I have to wait after the radiation treatments are done before I can restart my other therapies. I've thought about it long and hard and I don't think I'm ready to give up on the IV vitamin C therapy yet. Although my adrenal mass apparently grew in the presence of my IV C, I don't know if I might have had an even worse problem without the IV C treatments..... Of course my medical oncologist recommends I start on chemo using Taxotere. I'm not very enthused about that. I think if I really need chemo I might try Pemetrexed instead of Taxotere (lower toxicity with similar effectiveness). My oncologist is trying to convince me that I may only have time enough to try one more therapy, so I better choose wisely. I was starting to agree with him but now I am starting to feel better and starting to think I may have more time to play with. Of course there's no way to know, is there??? Through all of this I have become emotionally fragile. I now take Xanax daily to keep things under control. That's probably another reason why I disappeared from the message boards. I hope to regain some control over my emotions very soon. I don't like feeling like this, on top of everything else that's going on. So that's what's been going on with me lately. I'm sorry I have been missing. I'll try to be better in the future. I don't want to put my email address in the public forums, but if any of my friends want it, just let me know, OK? When I don't log into the message boards I don't get any PMs which any of you have sent to me. So I didn't even know some of you were looking for me. I see a lot has been going on here, some good and some bad (unfortunately). Thank you all for your concern. It means a great deal to me. Love to all, Dave S Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted July 20, 2004 Share Posted July 20, 2004 Dave, So sorry for your recent patch. I too have had my share. I just wanted to let you know that I was thinking of you and will say a prayer for you as well. Cheryl Quote Link to comment Share on other sites More sharing options...
stand4hope Posted July 20, 2004 Author Share Posted July 20, 2004 Oh, Dave. I am so very sorry you have had such an ordeal. I have been terribly worried about you. I am so glad to see your post and I'm glad that your pain is under control and you are sleeping at night again. If you go to the Profile at the top of the page, you can select where it says "Notify of new Private Message" and you will get an email at home. Then you can just follow the link, sign in and read your private messages. Could I also suggest that if you haven't already done so that you give Ry your home telephone number. She keeps a list and will only call if you have been off the board for a long time so we can know that everything is ok. If you don't want to do that, is there someone in your home, or a friend, that you could show how to log on, register with their own log in name, and post for you in the event you aren't able to sign in? I'm not going to offer any advice on your care or your choices because I can see you have that all under control. I want you to know that I greatly respect you for your attempt to make the IV C work. It's one of those things that you never know unless you try. You are certainly well-educated on the treatment, did your homework and gave it your best shot. Not only that, but you can still try it again later. You're a good man and we're sure glad to see you back. God Bless You, Peggy Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted July 20, 2004 Share Posted July 20, 2004 Dave, So sorry to hear all you've been through. Post only if you feel like it. If you need to conserve your energy and not post - so be it - but you've been missed. Cat Quote Link to comment Share on other sites More sharing options...
karenl Posted July 20, 2004 Share Posted July 20, 2004 Hi Dave Very glad to see you back!! Sorry to hear that you have been having such a rough time during your absence, but pleased that things seem to be settling down a bit now. That sleep deprivation is a real downer, isn't it. If you have the time to be doing some more research, you might be interested in inositol and IP6, if you haven't already come across it. Mum is trying it at the moment. Wishing you all the best. Karen Quote Link to comment Share on other sites More sharing options...
dave s Posted July 20, 2004 Share Posted July 20, 2004 Hi All, I wrote my previous post late last night and I now realize I left out a detail or two. During this same time I started having sporadic neurological problems, double vision, dizziness, etc. Of course my first thought was "great, now I've got brain mets too, just what I needed". Well I had a brain MRI and it came back clean! I'm not sure I believe it, but I was grateful to get some good news for a change. Looking back on it, I guess I shouldn't be surprised that I went into emotional "overload". Thanks again for all your warm wishes. BTW Peggy, I will send Ry my phone number. My dear angelic caregiver is capable of using the message board but seems intimidated by the whole idea. Perhaps I'll work on her (a little at a time). Best wishes to all, Dave S Quote Link to comment Share on other sites More sharing options...
Elaine Posted July 20, 2004 Share Posted July 20, 2004 Dave I am so glad to hear from you. And twice, now! Thank God for no brain mets and for mostly stable disease! I, too, am facing a great deal of emotional fragility, right now, and I am glad to hear that it can be controlled to an acceptable degree. Sometimes it seems otherwise as we spiral downward. You do know one thing about the IVC--you know you felt and feel better--with less respiratory symtoms so it was a success and doesn't look like a great deal of progression occured. I really missed you and wondered how you were. Glad to see you back. But I know it's sometimes too much to come here. love elaine Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted July 20, 2004 Share Posted July 20, 2004 Dave, You are in my prayers every day! I admire you for staying in control of your own care and recognizing your limitations. I very much understand the inability to post. I'm not the one sick, but also have my difficulties at times too. Take care and ZAP (FRY) that monster! Tina Quote Link to comment Share on other sites More sharing options...
shelliemacs Posted July 20, 2004 Share Posted July 20, 2004 Dave, I too am thrilled the the Brain MRI is clean. Thats is a relief. You can and WIll get the other issues taken care of, I won't believe anything else. I too understand the need for help with emotional overload and I am on Xanax as well now (along with two anti-depressants) I am gearing up for battle with my third family member is 18 months to have cancer. I will not loose this one though. I will not let my sister go. I lost mom and dad within 9 months and my sister is off limits now. I am in no way saying that I am in your situation as a patient, but that I understand the emotional toll it takes on one to battle this witch of a disease. all my best to you in your war. Quote Link to comment Share on other sites More sharing options...
dave s Posted July 20, 2004 Share Posted July 20, 2004 Dear Shelly, Thanks so much for your concern. It means even more to me considering all you have been through so very recently. For what it's worth, my 90 year old mother was diagnosed with breast cancer last year (while I was spiralling downward). She followed the surgeons advice and had a lumpectory only to find they had not gotten clean margins. The surgeon then suggested another lumpectomy. She went to another surgeon and said "take the damn thing off". They did and she has been fine since and still believes she made the right decision (I do too). Don't give up. You and yours WILL prevail. Dave S Quote Link to comment Share on other sites More sharing options...
Pat Posted July 20, 2004 Share Posted July 20, 2004 Hey Dave! Thanks for coming back and no need to answer my pm now. So glad to see you again! Patti Quote Link to comment Share on other sites More sharing options...
Lisa O Posted July 20, 2004 Share Posted July 20, 2004 Well I can certainly understand why you might feel emotionally fragile... you have been through so much. I am glad for the update. Thank goodness you have a clean brain and better pain control. Now you can move on with the fight. Quote Link to comment Share on other sites More sharing options...
Nushka Posted July 21, 2004 Share Posted July 21, 2004 Dear Dave, I was so glad to see your post. It sounds like you have been through the ringer lately and I can certainly understand the emotional roller coaster you are on. It is nice to see that your pain is better controled and that they have a plan to help with the IVC problem and blood flow. I wish you the best, as always, and continue to keep you in my prayers. Thinking of you, Nina Quote Link to comment Share on other sites More sharing options...
dave s daughter Posted September 20, 2004 Share Posted September 20, 2004 I have bad news to give to my father's friends here at LCSC. My father "dave s" passed away on Friday September 3rd. I am so sorry it has taken me so long to post this message. I have been thinking of all of you and I guess avoiding this task. My father was with me and his wife when he passed. I believe it was the way he wanted, if he had to go that is. He was a great fighter and he will be missed, for sure. I have learned so much about being a fighter from him. I wish you all the best, as did my dad. With Love, Dawn Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 20, 2004 Author Share Posted September 20, 2004 Oh no! Oh no! I am devastated over this. Dave and I had so many wonderful conversations in PMs. He was so hopeful, so optimistic and fought this disease with a vengeance. He gave me many tips and things for my husband to try - all of which I shared with my husband and we talked to the onc about them also. Dawn, I am heartbroken, and I am so sorry for this great loss! May God hold you close, as well as Dave's wife and the rest of his family forever. This is a sad day! God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted September 20, 2004 Share Posted September 20, 2004 Dawn, I'm so very sorry for the loss of your father. I hope you don't mind - I cut and pasted your message into a new thread, as I wanted to be sure everyone got this terribly sad update. Thank you for updating us. Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
tnmynatt Posted September 20, 2004 Share Posted September 20, 2004 Dawn, Oh my gosh! I am so sorry for your loss. Please give my condolences to you and all that loved him. He was such an upbeat contributor to this site. I will really miss him. You are all in my prayers. Take care. Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 20, 2004 Share Posted September 20, 2004 Dawn, I am so sorry to hear this.We will pray for strength for you in the coming days. Quote Link to comment Share on other sites More sharing options...
pecola Posted September 20, 2004 Share Posted September 20, 2004 Dawn, I'm so very sorry for the loss of you wonderful Dad. Gina Quote Link to comment Share on other sites More sharing options...
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