BoBennett
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Posts posted by BoBennett
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Thanks Melinda,
Thanks for responding and sorry to hear about Geoffs mom.
Sounds like the consensus is not everyone loses all their hair on Taxol. Yea I quite the processed food and sugar thing about 6 months ago. I don’t know what its doing for the cancer but I definitely feel great and I attribute it to the diet change.
Have a nice Thanksgiving.
Bo
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Thanks John & Haylee
I thought the nose hair thing was my imagination but the ear hair is gone too, I’d a never thunk it.
Bo
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Hey Frank,
I’m doing great thanks for asking and responding. I have been very fortunate in not having side effects. In any case, Everyone I talked with at my clinic, nurses included, told me it would all be gone by this time, they were right, I shaved it so it would be on my terms. If I had any thought there was any chance it wouldn’t have fallen out I would have never shaved it. It appears to be growing back just fine. Oh well time for a change anyway. I should have asked here first, this board is by far the best for info.
Bo
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I recently switched to Taxol from 6 months of Carboplatin and Gemzar I had no hair loss or side effects from the C & G. Is there anyone out there who has NOT lost their hair while on Taxol?
I am curious as to why some lose hair and some don’t, if there is possibly some reason, lifestyle or diet that is connected.
Thanks
Bo
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What a coincidence today I received remarks from two different people about what I have written in my information profile and they both made presumptuous remarks about such comments.
I would prefer that my personal profile be just that and not used to further someone’s lame adgena in a response or thoughts on their opinion.
If anyone would like to start a thread about the pros and cons of smoking and it contribution to lung cancer I would love to participate.
I understand I would be in the minority as I would take the cons side
Bo
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Donna
I agree that stress is an important part for good health and I personaly believe it needs to be dealt with for recovery. Managing it is personal and the hard part though. I used to ignore such things, at this time I realize the need to be aware.
Thanks
Bo
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Most likely someone who has written it in their med bio will chime in but in the meantime. In my search to understand how staging is set I read that the distance of the metastasis is a criteria for such.. I think it is nothing more than the distance and that would be a relative thing. Since I’m here, I also read that the further from the primary the more negative the staging. No distant mets would be a good thing, if.
Bo
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Good for you, hunting for reasons. As you have seen everyone has a different take on it. Don’t let anyone discourage you by telling you, you are wasting your time or are blaming anything or anyone.
I believe that smoking, foundries, oilfield, carcinogens and a host of others, are most likely contributing factors, some that obviously are connected more than others.
As for why do some not get cancer that are involved in such environments. I personally believe it comes down to personal health and dietary habits. But that is just a personal opinion based on my research and position.
I personally believe that genetics plays a part but genetics coupled with bad habits are a greater contributor to cancer. I personally believe that if you accept genetics as cause you accept that you are less likely try to change the outcome, why try if something you didn’t aid caused the problem.
Don’t let statistics cloud issues, Possible only 15% of smokers get lung cancer, but possibly 85% lung cancer victims are or were former smokers. That doesn’t answer why some non smokers get lung cancer.
These kinds of questions and responses are debated passionately by some and that makes discussion difficult but the whole thing is difficult.
Good Luck in You Fight.
Bo
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My last treatment, Gemzar/Carbo 9/16 I experienced a reaction at the site, back of hand, and it traveled up the vein into the upper arm. At this point my whole arm is aching. This was my 7th treatment. As a matter of fact I just returned from the doctor about the reaction. And I asked him if this is a sign of things to come. He did not know and deferred to my ONC, saying he thought there were drugs that could be given at the treatment time to help with this irritation. I have not had any reactions before.
I did not lose my hair, 2000mg Gemzar 800 Carbo. Side effects and reactions seem to be mostly an individual thing.
Good luck in your fight
Bo
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Thanks everyone for the Info.
I think it may have been the slow drip that created the problem, as both arms are tender. At one point, according to the nurse, it was slowed to a three hour infusion, . Drip Drip.
The hurt peaked last night so it did get better.
This kind of info is so valuable.
Thanks
Bo
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First let me say I am so impressed that a doctor would take time to listen to a patients thoughts and I feel so lucky to be here at this time.
I wanted and want straight up facts.
My Onc read Stage IV into his Dictaphone and then when I asked him how much time I had, he somewhat laughed and said to me “your healthy”. I knew what the stats were for stage IV so,,,,,,,,, He also said to me “we play to win” Two visits later I asked again, he said ask me in three months, Two months later I asked him again, he said he’s had stage IV patients who have lived for years.
During the initial period from diagnosis I went from knowing I was past my survival time, and feeling like I was a short timer to going into complete remission and resolution of bone mets.
Years ago “Now early in my career I would at this point go into statistics, 2 and 5 year survival rates, etc” I remember everyone being given a time period. Years ago I remember most all not making it.
Today I exercise daily and run twice a week have no pain and have no plans to leave due to cancer.
Personally I feel it is detrimental to be given a time period without a healthy talk about statistics being just that, statistic. If my Onc would have given me a time period and I had not learned that some folks squeak by and if my pain had not gone away I don’t think I would be here today.
In my opinion, as a rule, society thinks that cancer is a death sentence and the doctor knows the date.
I applaud you for understanding and asking about this serious aspect of diagnosis.
“Was I right in giving this information to the family without the patient being present? Should I have told them I can't really talk to them without their dad being present (that is the response the hospital lawyer would want me to give )? Am I not being "up front" enough?”
Sometimes families need to know. I believe a responses should be individual. Lawyers!!!!
Bo
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If it helps any my enzymes, AST,ALT are also, up and down. I do have a known problem with my liver that I choose to ignore years ago.
I have no cancer in my liver, we are sure of that, and my Onc tells me that the chemo won’t affect the enzyme levels. I am inclined to believe that the chemo does, just from watching my blood work and all that I have read. My levels have been around 125 for over 20 years and at the onset of chemo they have jumped as high as 350, and seem to drop below 200 the further out from chemo I get.
Good luck in your fight
Bo
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If I read this correctly Gemzar is an irritant which is better than vesicants. Interesting in that the entry was in the back of my hand and the pain has followed my vein around to the underside of my arm, there is a red flow about an inch long at the area where the fold in the arm is, where blood is often taken.
If in fact it is phlebitis will that affect veins further from the entry point or will it likely stay close to where the drug has been infused.
I like the part where you said it will get better. Does oncodoc imply that you are and oncodoc
Thanks all for the info.
Bo
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Thanks for the response. I did call the Oncs. office and my doc happened to be on duty and called me. He wasn’t concerned and said it was too early for an infection. He said if it gets any worse to call back or see my primary, bla bla bla. Its amazing how they scare the hell out you but when you call as instructed, its like, oh no problem.
I have heard also that chemo is bad stuff to have leak out. I would have liked to hear that they would put a saline or something in to dilute, but. I think once it is in and if it has leaked you are pretty much stuck with it, that’s just my thought though.
I also think, based a little on what a nurse told me, that because I have used the same vein for 4 months that the vein has become compromised, weakened, and maybe is leaking. That would answer why the pain is following the vein up through my arm.
I have been fortunate during my chemo to have more positive stuff and had little side effects so I guess this just goes with the territory.
Thanks
Bo
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Anyone have any info on veins hurting after chemo. Thursday when I was being infused the entry site in the back of my hand stated stinging, then it moved up my arm and at one point became quit severe. Finally they moved the port to the other arm. Today my hand and arm, as I follow the vein up, are hurting and beginning to swell. The entry point on the other arm is also tender. This has never happened before and it was the same, Gemzar, treatment I’ve been getting. I appreciate any information anyone has.
Thanks
Bo
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I will try and give some you some insight by telling you my experience and what a few attorney told me.
I saw 9 doctors in 6 months while trying to find out what my problem was. The pain was in my left arm, originating from some lumps. I also had pain in my right hip. All doctors made the symptoms fit to for cervical injuries, and none looked at or felt the lumps on my arm. This culminated in setting me up for surgery to have my neck fused. A routine pre-op X-Ray showed LC and cancer in my arm and hip.
No harm no fowl, would the outcome have been different. If I live past the predicted survival time, from the onset of symptoms, there would be no fowl. If I die there will be no case as Stage IV is considered terminal no matter the time it is found. Of course if I laid out a 10K retainer they would find possibilities for a case.
I have talked with several persons diagnosed with cancer who have had similar experiences and becoming involved in knowing what is happening through records is a good way to stay ahead of a compromised system.
I applaud anyone who gathers their records, and your case is a great example of why.
I would also recommend talking to an attorney but advise you, that in my opinion, their ultimate goal is similar to the doctors, the bottom line.
Good luck
Bo
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Thanks for the link Hebbie. I am actually inclined to believe the theory that tumors, (cancer) are anaerobic and are caused and or live in an atmosphere with less than adequate oxygen supply. So many theories and so many variables.
Thanks all, for the responses.
Bo
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I have heard many times that when surgery is performed if oxygen comes into contact with the tumor the oxygen will cause the tumor to grow rapidly. Personally I feel that is a myth but I haven’t found anything written on that subject. Anyone know if that is an accepted thought.
Bo
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The explanation stand4hope put up is what I believe to be the clinically acceptable criteria for staging, however, my take is that IIIb is looked at as miles away from IIIa in severity. In my travels I have found that even though this is what the majors use as criteria, doctors often seem to use other variables for bypassing the criteria as there are so many variables that come into account that staging should not be looked at as an ultimate diagnosis.
Keep on searching info, it helps in our control of what is happening. If I were your doctor I would knock off 2 stages just because you stopped smoking.
Good luck in your fight.
Bo
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I’ve been trying to figure out the staging myself and its my conclusion that there is no default set of rules with the exception of; I, II, IIIa, IIIb, IV, at least those are ones I run across in the major organizations and they seem to be accepted within most organizations. As already mentioned the size and distance of mets and their locations aid in the staging and I think some groups just add classes after viewing the variables for their use. I think to, obviously A is closer to the lower number than B, better and worst I would guess. These kind of questions are good. When I began learning about cancer I am surprised daily at the different sets of rules that explain such things. Who would a thunk that in this day everyone would have not been on the same page.
Bo
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I am assuming a cycle is a treatment. Or is a cycle a set of treatments. Anyone know?
I have heard that many Insurance cariers will only pay for the default amount of treatments that clinical trials showed the best results on. Is this true?
I am nearing what is considered the end my optimum treatments, I'm trying to get ahead of this so if my Onc wants to change my chemo I will be aware what the reason possibly could be.
Bo
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I am not having reactions per se but after each carbo treatment my blood gets a little more compromised after each treatment, (low white & red and 75% of the rest are flagged. Its progressively worse. At one point I was given a nupegen shot and my white blood went way up but within three days it was back in the way low range. I am just heading out the door to get my blood checked because I get dizzy just getting out of a chair and I like to know where my ANC is due to infections. I do feel somewhat weird and puffy while I am being infused, though never have been short of breath.
Good luck in your fight.
Bo
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I see so many post/question that I want to respond to but I’m afraid that my suggestion may be the wrong one for the wrong person, so I can only talk of what I feel is a decision for me. Hope it helps
At diagnosis my Onc was fairly consistent in saying that he didn’t want to put me through radiation as well as chemo. Radiation only if I needed it for pain. Now that the mets have responded, outside of the lung, he still hedges toward not having Radiation. Now that I’m more comfortable with knowledge of possible causes and possible curses as well as many of the harmful later effects of chemo and radiation I wouldn’t have radiation. That being said I’m too chicken to stop chemo even though I think that its as helpful as harmful .
Like Donna said she had no problems with the radiation, sometimes its a crap shoot.
Good luck in your fight.
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Its hard to understand what other folks feel but I have often questioned the difference between cancer tired and any other kind of tired. I was 6 months with cancer tired, not knowing I had cancer. I wasn’t tracking mentally and had difficulty just holding the paper, basically just not “feeling with it“. Its my understanding that the cancer sucks up nutrients otherwise intended for energy and body utilization. For me Chemo is a whole nother kind of tired. Anyway thats my take on it.
Bo
Betty, glad to see you didn't get blown away
Correlation Between Symptoms / Condition And Imaging Results
in GENERAL
Posted
Hey Bill,
I wasn’t sure I understood your Q at first but I have to say I completely agree that the tests and such have little impact for the Onc, it is the three questions that rule the treatment.. My Oncs first question is always, is there any pain. Since the pain left long ago and there are no symptoms he has little to say. The tests have more value for me as I get all reports and results long before he does, he actually seldom even gets results, he goes by what I tell him.
I think understanding how things work, such as your question is an important part of getting through lung cancer
I get blood work each week and try and correlate the results with how I feel, just can’t seem to find it though. Even when the mono is double the norm, indicating infections, I just go on a longer hike. The only comments from the Onc is via the reports and that is to say I have cytopenias, my blood is always trashed, but since I feel fine it doesn’t seem to mean a lick to the Onc.
Overall I have found no correlation to tests and how I feel.
Interestingly I have lost over 25 pounds in the last 4 months and he hasn’t commented. If he asked I could honestly tell him that discipline was the cause, not the cancer.
Anyhoo, all discipline is out the window today we are doing Thanksgiving a day late..
Bo