dave s
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Posts posted by dave s
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Thank you all for your kind responses and wishes. They mean a great deal to me.
Elaine, no I haven't gotten my scan results yet. I'm getting annoyed about that. I hate to be critical but I only need timely attention about twice a year, so I get annoyed when they appear "to busy". I had the CT techs create a CD with the images on it and delivered it to my Onc. for a quick read. I should have brought it home and looked at it myself!!!! I'll be asking them to fax the radiologists report to me this AM.
My fear is that I'm being discriminated against due to my having chosen to try a non-traditional form of treatment instead of more "shotgun chemo".
Best Wishes to us all, Dave S
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My Dear Friends,
Two years ago today I went for a chest xray due to a slight "rattle". My nightmare began immediately. "Come with me, we have your Dr on the phone and he needs to speak with you now".
I was diagnosed at stage IV with mets to left hip and left 2nd ribs, mediastinal adenopathy and a 5 cm primary RLL. Of course I was told of the customary 6 month life expectancy.
Interestingly I didn't believe the 6 months thing then and I still don't believe it now (although I still hear it from time to time).
So for those of you who are earlier in the journey than I am: Don't believe everything you hear...
I believe we can have impact on our disease and I believe the things I have done have made a difference.
Keep the faith, Dave S
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John,
As always your posts are insightful. Like you I am concerned that we seem to be painfully slow in bringing truly advantageous lung cancer treatment to practice. However it becomes easier to understand if we think about the mechanism by which treatments are "approved".
It gives us a great sense of safety and security to know that FDA approval is a long and expensive process. After all we must be protected from quackery at all costs, right?
Well there's a problem buried in there. The most recent estimates I've seen for the cost of taking a drug through the approval process is $900,000.00. Now where does that money come from? It is a "loan" of sorts from the major pharaceutical companies and is only granted if there's a reasonable expectation of it's being "repaid" with future revenues from a marketable product. This explains why only expensive new treatments are ever brought to market.
Think of it this way. Let's suppose you are very smart AND very lucky AND you stumble across a non-toxic substance which kills cancer instantly and leaves normal cells unharmed. Wonderful, that's our long dreamed of "silver bullet". OK, now how do you share this good fortune with the unfortunate victims of this disease? Well you can't, you can't even give it away. If you try you are breaking the law. You can't even talk about it until you have "proven" to the satisfaction of the FDA and the orthodox medical community (including the pharmaceutical companies) that it is effective and safe. How do you do that? Simple just pony up that $900 million for phase I, II and III clinical trials.
By the way, the pharmaceutical companies are not your friend in this endeavor. Your new cure jeopardizes $10,000 worth of revenue for each chemo treatment for each patient (oh yes, it makes linear accelerators obsolete too).
My point here is that this is not a simple problem to solve. We should not assume that if a treatment was effective and safe it would already be "approved". I wish we had a better system, but we don't.
I hope I haven't offended anyone here. I really think we all need to ponder these things and stop making so many potentially flawed assumptions.
Best Wishes to us all, Dave S
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Thank you all for your caring replies. I'm back and it went better than I expected. I explained to the techs about my problem and my fears and they were wonderful. I was only reclining for a very short time and handled it well. I'm guessing the meds helped too. I sure hope I don't require an MRI or PET anytime soon.....
I took a disk with the images on it to my oncologists office and asked that he call me ASAP, now I wait.
Thanks Again, Dave S
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Well I'm sitting here waiting to go for CT chest and abdomen. I'm near panic because of my inability to breathe when lying down. I don't know if I can fight off the panic and claustraphobia from being "trapped" in the machine and unable to breathe. I really need the CTs so I'm going to try very hard. God how I hate this disease.
I don't have time to get any responses but I wonder if anyone else has had this problem? If you can't breathe lying down, how can you get the needed scans????
I'm going to take 2 percoset to try and calm me down. It's very unusual for me to feel this way. I'm usually very controlled and methodical. I wish it was over. Wish me luck, Dave S
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bean_si,
Thanks for the info. I'm always disappointed when I find opportunists who try to prey on our desperation. We should start a thread on how we separate the legitimate from the illigitmate "cures". You know basic screening like, does the author stand to make money if the reader "buys" into the therapy, etc. I'll give it some thought....
Best wishes to us all, Dave S
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Hi All,
Over the past week I've developed increasing pain in my left shoulder. I'm now taking Percoset regularly to make the pain tolerable and I'm becoming concerned. I was already scheduled for CTs of my chest and abdomen next Monday so hopefully I'll get some info from that. I'll ask for more detailed "slices" in the area when I get the chest CT. Coincidentally this is my 2 year anniversary of my diagnosis (stage IV NSCLC). So I'm trying to think of what the possible causes are for this new pain. I'd like to have a list of possibilities in mind before I talk to my oncologist to review the CT results.
Shortly after my diagnosis I had shoulder pain a lot like this and it was found to be bone mets to the 2nd rib. At that time they said I had a pathological fracture. After radiation and chemo the pain went away and I've been pain free in this area ever since. I don't know if the fracture ever really healed or not. So that's one possible explanation (a re-fracture of that 2nd rib).
I also wondered about a pancoast tumor. Can anyone tell me if there are specific pain symptoms for pancoast or is it just generalized shoulder pain?
Any other ideas? I've already notified my oncologist (and asked for more Rx for pain killers).
This is probably a good time to tell you all how much I appreciate having this place to come and discuss/ask questions. If it weren't for you folks and this place I don't know what I would do. It's quite reassuring to have such wonderful folks to turn to.
Best wishes to us all, Dave S
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Hebbie,
I think it's just another example of how we must each take the ultimate responsibility for our disease and treatment. Both my radiation and medical oncologists were against my taking any kind of supplements during treatment ("we don't want you to do anything which could possibly work against our treatment").
For the first few treatments I heeded their advice. Then I convinced myself they were under-informed on the subject and from that point forward continued my supplementation through treatment. I think most Drs are not even aware of recent work suggesting that antioxidant use may actually improve the effectiveness of many kinds of treatment as well as minimizing side effects for the poor patient. How can we expect our Drs to keep up with all the new info which comes along? They may very well have even less time for research than we do. I feel that the most difficult decisions are those we have to make with incomplete information. I hate that. I do keep the Drs informed of my decisions along the way.
As much as we might wish to do so, I don't think any of us can afford to entrust all of our medical treatment decisions to our Drs.
Dave S
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If you think degenerative changes is bad....
On my brain MRIs they always note "Cerebral shrinkage commensurate with age". Geez! Some things are better left unsaid
Dave S
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I would have to disagree about the "optical migraines" being stress related. I started having them (30-40 minutes duration) 8 months PRIOR to my LC diagnosis. I still get them ocassionally but not as frequently. I'm thinking they are reflective of some imbalance somewhere in the body. I had diagnostic workups but found nothing. Just my opinion....
Dave S
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I'm with Eline. I'm not sure what the term skip mets means either. It sounds like they mean mediastinal adenopathy WITHOUT the involvement of more local (closer) nodes (to the primary tumor). If so I'm thinking that group probably includes a lot of us????
Dave S
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Hi All,
I received a PM from someone wanting to know my thoughts about taking anti-inflamatories prior to PET scans. Rather than PM'ing I thought I would post here so others can voice thier opinions as well.
On my very first PET scan I had multiple "hot spots". Further testing (MRIs, etc,) had to be done to decide whether these were cancer or something else. It turned out that only 2 of these hot spots were metastases. I was disappointed that I went through the anguish and additional testing required to determine this end result.
After checking to find out how this happened I found the following:
What the PET really does is highlight areas of increased glucose uptake. These areas are suspect for cancer. The problem is that other conditions cause increased glucose uptake also. Areas of inflamation are one of the big problems. Recent or old injuries can cause hot spots too.
Therefore on all subsequent PETs I have taken ibuprofen in rather large doses for 3 days prior to the scan. My theory is that this will lessen the inflamatory processes and reduce their tendency to produce false positives on the PET. I don't believe the ibuprofen will have any effect on the glucose uptake of genuine cancer cells.
The above is just my opinion and I'm no Dr. Like so many other things in this dreadful disease we each have to make our own medical decisions. I would say that anyone else who wants to do this should inform their Dr prior to doing so (as I did). I don't want to miss any opportunity to avoid the negative effects of false positives on PET.
Best wishes to us all, Dave S
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Dear Karel and Rachel,
Thanks for the reply. First regarding the IV C:
There's a lot of info around but you have to dig for it. Starting with Linus Pauling and Ewan Cameron who had substantial success with it. You've looked at the Hoffer work and now the RECNAC project. THere are many proponents for IV C.
I think that rather than try to find a form which is not as readily excreted from the body we would be better off to simply compensate for the rapid excretion with more C. I have not determined that there is any identified threshold of maximum dosage for the IV C. I've seen reports of up to 125 grams being infused with no ill effects. I'm currently on 50 grams twice per week. I expect if necessary I could probably safely increase to 75 and then 100 grams perhaps 3 times per week.
There are also other techniques could be used. The RECNAC folks also tested a large bolus of C followed by smaller continuous drip of say 30 to 50 grams. The advantage here is to maintain plasma ascorbate levels above the cytotoxic threshold for as long as is desired. The problem for someone like me with that approach is that I don't have sufficient access to the testing facilities required to monitor my plasma saturations in real time.
The other benefits of the C are not insignificant. The increased collagen production induced by the C gives a lot of protection against further metastasis. I guess at this point I am commited to IV C unless and until such time as I'm forced to abandon it.
You asked about my experience with Cesium. I was only on the Cesium for about 3 weeks. My timing was poor. I was in the middle of a raging progression of my disease and developed severe breathing problems. Tumors were compressing the bronchi to all 3 lobes of my right lung and they were all but totally blocked. I had a bronchoscopy to explore the option of stenting the bronchi but they were already to occluded. At that point I was desperate. My medical and radiation oncologists would only treat me on the condition that I stop the cesium and so I had to agree. So in all fairness I didn't get to give the cesium a fair test. However I must admit I was very sick at that time and I can't say that the cesium wasn't part of the cause for my extreme condition. I simply don't know. One thing I didn't like about the cesium is that it's half life in the body is about 3 months. Another thing which troubled me was I felt that the pH of the interior of cancer cells was speculation and had not been adequately proven.
I am much more enthusiastic about IV C than I am about cesium. I would encourage you to give serious consideration to IV C. As I said before it makes perfect sense to me. If you are now or become in the future, aware of flaws in the protocol please let me know.
Regarding chemotherapy and radiation, I have had a lot. I am aware that organ damage results from most of the traditional protocols in common use. I know that I have permanent neurological damage and I will always be at increased risk for future cancers due to the treatments I have already had. For these reasons I will be reluctant to consider more radiation and chemo for myself.
Please let me know if you have further thoughts you are willing to share. If you have any questions I may be able to answer please let me know that also.
Best wishes to us all,
Dave S
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Laura,
I have stage IV NSCLC adenocarcinoma too. My CEA has always been normal. I wish I had a simple marker like this I could use for monitoring my progress. Since I don't have any marker to use I must wait for my scans to reflect whether I'm doing well or poorly. So in a sense I envy you for having a marker to give you early indications as to the effectiveness of treatment.
If I did have a CEA level which was responsive I would rely on it heavily for use as an EARLY indicator of whether any particular treatment protocol was working or not. Just my opinion, of course.
Best Wishes, Dave S
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Hi Karen,
If there's a flaw in the IV C strategy I haven't found it, so I would really appreciate another opinion. I love the science behind it. Apparently there's no dispute about the extreme catalase deficiency inside of cancer cells. That was the part that I was originally most concerned about.
My only remaining concern is implementing a treatment schedule that brings the blood up to the magic 400mg/dl level frequently enough and for sufficient time to kill ALL the cancer cells. The body excretes the ascorbate so rapidly that plasma levels are back to near baseline in 24 hours. After my 4th IV I had my levels checked after 50 grams and I was at 358mg/dl so I'm pretty confident I'm achieving the 400 now. However since I'm only doing the 50 gram IVs twice a week, I may only be actually over the 400 number for as little as say 2 to 4 hours per week. That may not be long enough to achieve complete eradication. It seems to me that the ideal solution would be a continuous drip at a low level to offset the excretion rate. But for now I'm following the published protocol.
My scans are next Monday but I'm concerned that they may be muddled by all the scar tissue I have, we'll see....
What I can say without reservation is that prior to starting the IV C I had difficulty walking 30 feet. I felt awful and was incapacitated by any standard. In March I was facing the real probablility of being hospitalized to be put on a ventilator. Of course that was a one way trip.
Within 2-3 weeks after starting the IV C I felt much, much better and now I am able to function again. I go up and down stairs without difficulty. So in my judgement, even if the treatment does NOT eradicate my cancer, it's still been a godsend for me. I love the idea that I have at least some chance to eradicate my disease. Nothing else offers me any hope of that.
For what it's worth when I spoke to the researchers their comment was that some practitioners who claim to be using the treatment are not using enough to get the full effect. They agreed that it's essential to measure the plasma saturation and adjust the dosage accordingly to achive the 400mg/dl for as long as possible and as often as possible.
If this isn't the "silver bullet" for cancer, I haven't yet discovered why.
I'll be anxiously awaiting another opinion. Thanks again,
Dave S
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KarenL,
Thanks for your reply. Since your Dad is both interested in researching alternatives and an MD have him take a look at this:
http://www.canceraction.org.gg/recnac.htm
It's a brief description of a treatment protocol I am currently following. I've spoken with 2 of the principals on the research project and find them to be above reproach. They completed phase I and Phase II trials using only contributions from a benefactor whose instructions were to find a non-toxic cure for cancer. The lacked sufficient funding for phase III trials but clearly they are on to something here.
I'm using some slightly different dosing but still trying to achieve and maintain the cytotoxic plasma level of 400mg/dl for as long as possible. I'd like to know what he thinks of it. Could you let me know please?
Best Wishes, Dave S
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Cathy,
I only have 2 minutes right now but I can tell you are anxious. Go to "Search" at the top of the page and put in your gvax term you should get back a list of posts relevant to this topic. Do the same for Tarceva and whatever else you are interested in. I have to run now, but check back and follow this forum for more info on alternatives, OK?
Best Wishes, Dave S
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Hi,
When I was started on Taxol/carbo I had really intense bone/joint pain. I mean intense. But I also had transient pain at the site of known tumor masses. One of these was my left 2nd rib (which fractured). So I had some shoulder pain associated with that.
Generally I try to think of pain as reflecting something GOOD going on inside. In my case the transient pain gradually subsided and was replaced by a "crawling" sensation in my right/middle chest. This was the location of my 5 cm primary tumor. Sure enough at my next CT, the 5 cm primary was gone and only a bit of scar tissue remained.
Right now I'm on a different therapy and recently started having pain where I didn't know I had any tumor activity. Now I really don't know what to think. For better or worse, I'm getting CTs chest and abdomen a week from today (and trying not to let myself think about it until then).
Good luck to us all,
Dave S
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My Friends,
Thank you so much for all the insightful and well thought out replies. I think I can begin to see the many factors involved here. Many of us think that Alternative therapies means only the "softer" things discussed here like creative imagery, meditation, listening to music, etc. and also supplementation. My simplistic mind considers these things to be largely incremental solutions to the problem. While none of them promises a total solution, they may each have role in inching toward a solution.
My definition of alternative therapy is broader in that it includes bio-chemical based strategies which have simply not yet made it to the mainstream. I'll have to admit that I have an aversion of sorts to the "softer" things too. So I can easily understand why many here are not clamoring for more "alternative therapies". I have a much easier time getting enthused about scientifically based strategies. My inclination is to embrace things I can understand and explain (some would say a more typically male attitude).
So here is my problem. I'd like to see a discussion of some of these bio-chemical strategies but where do they fit? Originally I thought "Alternative and Complementary Therapies" but there seems to be such a small volume of traffic here I wonder if this is the wrong place? The other possibility is "New Research/Treatment Options/Financial" but that forum makes a point of saying it's for traditional medicine only. Are bio-chemical based but as yet unapproved therapies tradional medicine, hmmmm?
I just read back over this and now the whole thing seems trite. I'll try using this forum for such things and see what happens.
Thanks again for your insight. Best of luck to us all, Dave S
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My Dear Friends,
I'm frustrated. I can't understand why more folks on this board aren't interested in non-traditional therapies. I knew within 2 days after my diagnosis that traditional medical treatment offered me precious little hope for beating my disease. Both my Dr's and my web research agreed my odds for long term survival were poor at best.
Like so many others here I was diagnosed at Stage 4. So despite having had no symptoms, I was instantly inoperable and therefore officially incurable. All agreed my life expectancy was less than 6 months. I decided to begin traditional treatment ASAP and continue research looking for better alternatives for the day when traditional treatment failed me. So how is it that (it appears) most of us simply accept the dismal pronouncements of the medical community and don't even try to do better????? I base this conclusion on the small number of messages and the view counts on the Alternaive and Complementary Therapies Forum. Have I missed something here?
Perhaps this is a taboo subject. If so, tell me and I will delete this message.
Color me confused,
Dave S
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Jamie,
My take on the PET VS CTs is this:
They look at completely different things. The CT is like a series of very focussed xrays and shows differences in tissue texture. For instance, in my case it has gotten to the point where CTs are muddled by all the scar tissue left from what used to be active cancers. I still get the CTs because they are quick and less expensive, but they do have limitations.
The PET on the other hand seeks to highlight tissues with higher metabolic rates. Cancers have this higher metabolic rate, but so do other tissues such as muscles after use, inflamatory processes and sometimes permanent but healed scar tissues. They way they try to identify the higher metabolic rate tissues is by having you fast to starve you of blood sugar and then injecting you with sugar which has been laced with a radioactive tracer of sorts. The "hungry" high metabolic rate tissues (like cancer) suck this up in a hurry. Then they scan you for the positron emissions which occur as the "radioactive" tracer decays. The areas where this emission comes from are suspect for malignancy. That's why PET scans are so subject to false positives, because there are other reasons for tissue to have a higher metabolic rate.
I always take anti-inflamatories for 2-3 days prior to PET scans to try to minimize false posititves. I asked a Dr about this and he said "yes, good idea". I should have asked him why he didn't tell patients to take them.....
Dave S
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Elaine,
For the past couple of months, whenever I cough heavily (quite often unfortunately), I immediately burp. It's clear to me that somehow I am forcing air into my stomach as I cough. I was surprised at first but now I'm used to it (like so many other things, sigh). My grandchildren are very impressed.
Dave S
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Sharon,
I was diagnosed NSCLC stage 4, two years ago this month. Just after diagnosis I noticed a tendency to limp when I walked. Bone scans revealed mets to my left hip and left 2nd rib (primary was in RLL). After an MRI the Drs put me on crutches until I could get surgery because the cancer had severely weakened the left femoral neck making me susceptible to fracture. My point is I had very little pain. So I'm of the opinion that pain is not necessarily a good barometer of bone mets. For my rib mets I also had very little discomfort UNTIL I broke the rib (now that hurt). After some radiation and chemo both mets resolved and were clear on subsequent PET scans. I also asked for Zometa which may have helped too.
Best wishes to us all, Dave S
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Deb,
There are probably 2 different things going on here. The first is your original pain complaint and the 2nd is the pain produced by the radiation treatment itself. That probably expalins the change is your perceived location of the pain. Your Dr's should have prepared you for this as they discussed the side effects of the treatment. Radiation is nasty stuff. It injures the tissues through which the beam passes. This produces pain independent of the original condition. Just my opinion, but been there, done that....
Dave S
Nice ain't cuttin' it.
in GENERAL
Posted
Hi All,
First of all I have never seen the magazine, but when I looked at the website I see they give free subscriptions to cancer patients. That tells me they make their money from advertising. So it's probably not realistic to expect them to take any position which might irritate their advertisers. I'm going to take a wild guess and assume their advertising revenue comes largely from the big drug companies. Bottom line is we can't expect them to "bite the hand that feeds". Makes sense to me. Does it make any sense to you? Just my uninformed opinion....
Best Wishes to All, Dave S