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dave s

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Everything posted by dave s

  1. 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
  2. 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
  3. 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
  4. Thank you all so much, my wonderful caring friends. I am back and I'm doing OK. I'll be posting some updates soon. I have a bunch of PMs to respond to also but they will take a bit longer. Your concern means a great deal to me. All my Best, Dave S
  5. 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
  6. Jen, I was told that chemo causes your liver to have to work "overtime". Of course alcohol also places some additional burden on the liver. Therefore it is probably not a good idea to "tie one on" in the time just before and for several days after chemo. On the other hand I don't think a glass of wine or two is likely to be catastophic. All of this is just my relatively uninformed opinion. I'm starting to think that our mental health is a critical factor in the success of all forms of treatment. If a drink or two helps then I say go for it. I feel we need all the help we can get. I never thought I would be taking the things I cam taking now (like Xanax), but I am. I'll do whatever I have to, to get through these extremely trying times. Best Wishes, Dave S
  7. Sandra, I'm sorry to hear your latest news. I don't see any reason why you couldn't use high dose IV C along with Iressa and radiation. The developers actually recommend that. A bigger question is probably how long will it take to get started on the treatment. If you need to go to Kansas for a workup as I did, that will take probably 3 weeks or so. But you mentioned you may have a local resource who could get you started immediately, didn't you? Let me know, Dave S
  8. Sandra, My email to you came back with an automated reply which said you weren't coming back until July 19th! Wow, that's a long time. Since that's the case I'll pass along a little of it here: For general info take a look at http://www.canceraction.org.gg/index2.htm The protocol I am using is briefly described here http://www.canceraction.org.gg/recnac.htm The short answer to your question about any cautions or side effects is: NO. Let me know how I can be of further assistance, OK? Dave S
  9. Sandra I sent you an email w/info.
  10. Fay, I always get copies of my scans. I used to get films but lately I get CDs. I have noticed that there are 2 different types of files on the disks. One type contains the reader on the CD and it starts automatically when I insert the CD into my PC. It comes up with "eMed Image CD viewer" and tells me how to proceed. That's probably what you are supposed to have. If you are a PC person you probably know how to use explorer to see the files on the CD. If you do then look for something like autorun.exe. If you can find it, then double click on it to see if that starts the viewer. If not then look to see what file type the data images are. If you can identify the file type (that's the 3 letter suffix) then we can determine what to use to view them. Let me know, OK? Or you can just have your folks call the folks who created the disk and talk to them directly. That may be the most expeditious route to take. Good Luck, Dave S
  11. My Dear Shelly, I am so sorry to hear this. I probably should not write this but I too have felt and still feel to a large extent, the acrimony you describe. I have felt this way with signficantly less adversity than you presently bear. I so admire the many on this board who's profound faith prevails regardless of circumstance. It seems most here have had their faith strengthened by the adversity. Not so for me. I wish I could feel the faith of others on this board, but I cannot. I wish for both of us to find the profound faith others here have found for it would surely be a great source of comfort. All of my best wishes go out to you, Dave S
  12. Sandra, Vitamin C has a dual personality. In low doses is an anti-oxidant but in extremely high doses it becomes very pro-oxidant. What this means is that high doses of vitamin C cause the generation of peroxides in the cells. For normal cells this doesn't matter since their catalase content neutralizes the peroxides to harmless oxygen and water. However cancer cells are very different. One of the defining characteristics of cancer cells is their extreme deficiency of catalase (10 to 100 fold). Since the cancer cells can't neutralize the generated peroxides, they accumulate in the cancer cells only and kill them within a fairly short time. Now in order to achive this effect a large quantity of vitamin C must be infused. There was a 15 year research project called RECNAC (cancer spelled backwards). They determined that plasma concentrations of 400mg/dl are required to achieve cytotoxicity (that is to kill cancer cells) for most of the cancer cell lines they tested. For the average person I believe that translates to about 50 or 60 grams of IV C per infusion. The biggest problem with this therapy is that the kidneys excrete vitamin C at a very rapid rate. No matter how much you take in, your plasma levels are back to near baseline in approximately 24 hours. So effective therapies require the repeated infusion of large quantities of IV C at regular intervals to keep killing the cancer cells over time. I have spoken with 2 of the principals in the RECNAC project and I am currently following the protocol they developed. I am taking (as of last week) 75 grams of vitamin C two times per week. Prior to that I was taking 50 grams, two times per week for the preceeding 2 months. If your nutritionist is suggesting these large doses of IV C then this is what they are trying to achieve. If on the other hand they are only suggesting, say 15 to 30 grams then they are only looking for anti-oxidant effects. There is a concern that anti-oxidant doses could undermine the efficiency of chemo by repairing the DNA damage that the chemo is trying to cause. I don't personaly believe that myself. I feel the the chemo induced mutations are so strong that vitamin C alone can't reduce it's effectiveness sufficiently to undermine it's overall effectiveness. If you are interested in the cytotoxic IV C protocol I can provide you with more information. In either case it's unlikely your oncologist will know much about the therapy and will naturally not want to risk any possibility of undermining the effectiveness of your chemo with something they don't understand. For what it's worth, the developers of the IV C cytotoxic protocol believe it is also useful as an adjunctive therapy (that is, used in combination with conventional chemo). Let me know if you are interested in any more information on this subject. Best of luck to you and yours, Dave S
  13. dave s

    One year...

    Debi, Congratulations on your "anniversaries". You are so right about the enormous value of this board. How else could we possibly connect with such a wonderful and knowledgeable group. I learn things here I would never find on my own. Thanks to you all, Dave S
  14. dave s

    Celebrex

    Geoff, Thanks for the reference. I had to argue with my oncologist 2 years ago to get Celebrex. He was quite resistant ("there's no proof, etc."). At that point I was looking to minimize PGE-2. I didn't know anything about specifically boosting chemo effectiveness. I finally got him to first perscribe 200mg/day and then a month later I got him to increase the dosage to 400mg/day. I've been on it ever since. Now I see the study you reference seems to suggest 800mg/day. I wonder if I should go fight for an increase to 800mg/day. It would be a much easier fight now. Over the last 2 years my oncologist has become a great deal less resistant to new things. I know he is amazed at how much better I have done than was expected. I have seen several members here whose profiles indicate they are taking 800mg/day. Thanks again for the info, Dave S
  15. bean-si, I can't figure out what happened here!!!! You said you didn't get the logic behind what I said. Now if I don't respond in some way, readers will think I have changed my mind and the whole thing is garbage. Well it's not garbage and it just might help save someones life. I tried to give an understandable and reasoned response. If somehow that offended you I'm sorry. We need to give people here the opportunity to help themselves. I don't know what else I can tell you. I'll admit I'm on tons of pain meds right now, but I still don't think my post was flawed. I'll ask if anyone else reads this the way you did to please let me know. If I'm making inappropriate posts then it it I who should stop posting. Dave S
  16. bean-si, I'm not sure just what part of the picture you can't get. The picture is pretty simple really. Consider the PET scan technique for a moment. Radioactive sugar is given to the patient. 45 minutes later the cancer cells have picked up the sugar and therefore show up on the scanner. That's how reliably and quickly the cancer cells pick up the sugar. I offer my opinions on this board to help those who are sufficiently motivated to seek out the slight advantages needed to give them long term survival. I always try to make it clear when I'm giving my OPINION and therefore everyone is forewarned and can make their own decisions accordingly. None of us should ever make any treatment decisions without having satisfied ourselves first about the advisability of whatever it is we are comtemplating. There are way to many of us suffering and dying here despite the best organized medicine can offer to us. We simply must help each other. We have some of the best and brightest minds around right here on this board. Our collective wisdom is an impressive force indeed. Regards, Dave S
  17. dave s

    What next?

    Dear Friends, I resisted the urge to respond to this post when it first appeared (quite some time ago). I am generally reluctant to inflict my opinions on others about controversial issues, BUT.... I see an attitude being expressed here which I feel is potentially very dangerous. The attitude is summed up best in Jamie's most recent post. I'm not picking on you Jamie so please don't think that. But it's important to consider the downside of treatment along with the potential gain. Both chemo and radiation are toxic. They are designed to inflict the maximum possible damage to the targeted cells DNA. Their mission is to damage the DNA of the cancer cells so severely that they can no longer reproduce. They can't kill the cancer cells directly but they can and do cause so much DNA damage that they can't reproduce at all. Now think about this in the context of the worst possible environmental exposure possible. Which do you think is more destructive, 50 pack years of smoking or a course of chemotherapy? Which one is more likely to cause additional future cancers? My point is that both chemo and radiation are extremely high risk therapies. They are given rather freely in cases where they are percieved as the lesser of two evils. It is a mistake to overlook the fact that they leave behind their own permanent legacy of damaged DNA (and future cancers). I'm sorry to be blunt here, but I cringe when I think people may be making treatment decisions about possible radiation or chemo as "it can't hurt". It can and it does "hurt". It's a calculated risk and must be balanced carefully against the possible reward of stifling cancer growth. Best Wishes, Dave S
  18. Dear Friends, When I was in chemo I made a decision to do everything I could to increase the effectiveness of the chemo. As I researched the mechanism of action of the chemo I was on, I found that it was picked up most readily by "high metabolic rate" cells. The idea is that cancer cells will have a higher metabolic rate than normal cells. Now we also know that cancer cells are a magnet for glucose. That is, they suck up the glucose so quickly that they deprive the normal cells of the opportunity to take up the sugar. So I tried to take advantage of those facts as follows: On the day of my chemo and for 2 days afterwards I would purposely eat candy bars and other known sources of simple sugars. At all other times I tried as best I could to eat as little sugar as possible. I did this knowing that the cancer cells would suck up the sugar faster than the normal cells and that the sugar would further increase their already higher metabolic rate. Since the chemo is targeted at the higher metabolic rate cells, I reasoned that this should increase the overall effectiveness of the chemo treatment. I mentioned this to my oncologist and he really didn't have an opinion on the subject. I've never seen any discussion of this anywhere. It's just my idea and I did it because it made sense to me. Best Wishes, Dave S
  19. Ry, Thanks for the info and for setting me straight on this. Regards, Dave S
  20. Angie, My Onc. denied any connection to my chemo for the nosebleeds. I didn't believe it then and I don't believe it now... Dave S
  21. Angie, Yes, I have had severe nosebleeds with carbo and Taxol. The first one scared me pretty badly. I was shocked at the rate of flow. I called the Onc. and he said to go to emergency which I didn't want to do. Why do these things always happen on weekends or late at night???? Anway I packed it tightly and kept checking. It took 4 hours to clot so I could remove the packing. My platelets were low at that time. I had several more but I knew what to expect and what to do by then so they didn't bother me. The Onc. said to pinch the bridge of the nose to slow the blood supply but that didn't do anything for me. Don't panic, pack it tightly and it should stop and clot eventually. They can cauterize the bleeders in emergency if necessary, but I never did. Good Luck, Dave S
  22. Larry, Thanks for the advice. My only comment is that even Qauckwatch must taken with a grain of salt. Everyone is well-intentioned but has their own biases to deal with. Unfortunately each of us must decide what we believe for ourselves. The path of least resistance is always to follow the views of the orthodox medical commmunity. The problem is, following the best treatment protocols available from officially recognized oncology today yields unsatisfactory results all to frequently. You are absolutely correct. There are a multitude of scam artists and fraudulent operators out there who try their best to take advantage of our desperation. Thank you for your post. Regards, Dave S
  23. Karen, Last December I suddenly developed severe respiratory distress. I had a bronchoscopy from a pulmonologist who wanted to stent the bronchi to my right lung which were relatively closed off at that time. He determined at the bronchcoscopy that I was not "stentable" due to the extreme closure of the bronchi and the "hardness" of the underlying tumors. He said I would probably have to be put on a ventilator and that if I was I would never come off it. He told me I had very little time left. I was put on oxygen and chose to take radiation and some chemo. At that time I could not walk for 30 feet. My pulseOx was down to 72 without oxygen and I was very fearful. My condition stabilized until I had some bad reactions to chemo in early Feb. I suspended all traditional treatment at that time. I then started an alternative treatment program and have improved considerably since. The extrinsic compression in my right bronchi has improved significantly despite the assurances I had received that no improvement was possible. My point is that there is always hope and the Drs sometimes are wrong, particularly when they seem unduly negative. I am so sorry that you find yourselves in this terrible predicament. So I don't know if you could call my experiences a comeback or not, but I feel like it is. I'm still dealing with my disease but I'm under no immediate threat of having to be placed on a ventilator. I now climb stairs without difficulty and am able to do most everything I want (although at a slower pace) without critical SOB. Best Wishes Always, Dave S
  24. Hi DonnaE, I don't have any info on Cancer Treatment Centers of America but I thought I would share with you my view on such things. They do a LOT of expensive advertising. Moreover their advertising seems to play up a very emotional sell. That kind of approach is a caution flag for me. It doesn't mean they aren't wonderful, I simply don't know. Secondly, in my attempts to research such things I have formed the opinion that there are very few real differences in the treatment options offered by most of the various treatment centers. Now I must admit that CTCA does emphasize nutrition and other "alternative" techniques and that is a very good thing, but you don't necessarily have to go there to get nutritional or other guidance. Their views on nutrition for example are presented in a book written by Patrick Quillen who heads that area for them ("Beating Cancer through Nutrition" or something similar, I believe). Traveling to remote treatment locations presents a whole additional set of logistical problems to be solved. Things like travel expense, insurance coverage, finding a local Dr to monitor and work with the remote clinic, etc. I have dealt with a remote treatment facility and have been through some of this myself. I notice we are relatively neighbors by the way. I am located about 20 or so miles North of you just off the North end of route 21. Have you started any supplementation yet? If not you may want to consider that as well. It's pretty well proven to make a significant difference and is quite easy to do on your own. There's a lot of info both here and on the rest of the net about such things. There are also non-traditional treatment therapies which you could consider. Usually it takes a while for folks to shift their focus from mainstream medical approved treatments but you will find some information here on this board regarding such things if you are interested. I have made this transition for myself. You can find a brief history of my disease in my signature block below. I admire your activism activities very much. Best Wishes for finding your "silver bullet", Dave S
  25. Cat, I understand what you are saying and this subject has come up before. I wonder if we err by putting to many conditions on our posts. It would be a shame if we were to discourage some potential posters here. There are already some recent reports of someone who has chosen not to post rather than risk being to negative to suite some potential readers. I'm thinking the true strength of this board is our ability to encourage others and to disclose freely without the need to be concerned about what someone else may read into it. Let's face it this is an ugly disease. There are times when I don't come here because i'm not ready for it. That is my choice. It is everyone's choice. I'm not disagreeing with you as much as I am pointing out the value of a free exchange medium without a lot of arbitrary restrictions. Just my 2 cents.... Best Wishes, Dave S
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