Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Donna, just like to confirm what you are saying. I have had someone staying with me all night following all of my surgeries...I was very happy that they were there. The " night shifts " in hospitals may be understaffed....there can be a couple " crises " going on at once and nobody comes to your room after you push the button. You never know what is going to happen. When several days have passed and you start to feel stronger, its not as important, but to have someone there all night for at least the first night or two is really not a bad idea. One more thing - be SURE you get a PRIVATE ROOM. If you don't have a private room, the nurses likely will NOT let caregivers stay all night in the room. But even worse, you could be in a room with someone screaming and moaning...or like happened to me, some guy with a steady stream of visitors all day long. For whatever unknown reason, hospitals are HORRIBLE places to sleep at night. The nurses are continually coming around to check this and that, blood draws at 3am, etc. and it is damn near impossible to get any decent sleep. Oddly enough, often the best " quality sleep time " is in the DAY!!! If you have to listen to the loudmouth relatives of your roomie during that time, you ain't gonna sleep day OR night!!! Best Wishes, > > Betty, > Sorry I did not respond sooner, but I received your message at work and my information was at home. When we saw our doctor to schedule the appointment, he gave us a packet of information. It included places to stay. When my dad was a patient at the several years ago my mom stayed in his room with him. It wasn't the most comfortable bed, but it worked for her. When my husband was at Riverside I stayed with him some nights because I wanted to make sure things were being done correctly for him. We caught several errors the nurses were about to make. YIKES!! In case you do not receive the packet, the places to stay are: University Plaza Hotel $55 single $65 double, Fawcett Center for Tomorrow $79, Cross Country Inn North $38.25, Cross Country Inn South $42.75, Holiday Inn on the Lane $65, Super 8 Motel $45 & $49, Days Inn $36, Red Roof Inn $49.49 & $53.99, and Fairfield In by Marriott $69. There is a shuttle that goes between the hospital and these hotels. The shuttle runs Monday-Friday 7:00am - 9:00pm. I cannot recommend any of them because I stay with my cousins who live close to the hospital, therefore I have never stayed in any of these hotels. They do charge to park there, however, they offer reduced rates parking passes which can be purchased at the Park and Ride desk in the Hall lobby. A 7 day pass is $21. The first pass must be purchased for a minimum of 5 days and additional passes can be purchased for $3 per day. My husband's doctor is E. Ellison. He is the chief of surgery there. If I can answer any other questions for you, please let me know. My dad was treated at the 7 years ago for bladder cancer and he is still doing very well today. I will let you know more about our experience after we come back. > > Best of luck to you my friend, > Donna M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Donna, just like to confirm what you are saying. I have had someone staying with me all night following all of my surgeries...I was very happy that they were there. The " night shifts " in hospitals may be understaffed....there can be a couple " crises " going on at once and nobody comes to your room after you push the button. You never know what is going to happen. When several days have passed and you start to feel stronger, its not as important, but to have someone there all night for at least the first night or two is really not a bad idea. One more thing - be SURE you get a PRIVATE ROOM. If you don't have a private room, the nurses likely will NOT let caregivers stay all night in the room. But even worse, you could be in a room with someone screaming and moaning...or like happened to me, some guy with a steady stream of visitors all day long. For whatever unknown reason, hospitals are HORRIBLE places to sleep at night. The nurses are continually coming around to check this and that, blood draws at 3am, etc. and it is damn near impossible to get any decent sleep. Oddly enough, often the best " quality sleep time " is in the DAY!!! If you have to listen to the loudmouth relatives of your roomie during that time, you ain't gonna sleep day OR night!!! Best Wishes, > > Betty, > Sorry I did not respond sooner, but I received your message at work and my information was at home. When we saw our doctor to schedule the appointment, he gave us a packet of information. It included places to stay. When my dad was a patient at the several years ago my mom stayed in his room with him. It wasn't the most comfortable bed, but it worked for her. When my husband was at Riverside I stayed with him some nights because I wanted to make sure things were being done correctly for him. We caught several errors the nurses were about to make. YIKES!! In case you do not receive the packet, the places to stay are: University Plaza Hotel $55 single $65 double, Fawcett Center for Tomorrow $79, Cross Country Inn North $38.25, Cross Country Inn South $42.75, Holiday Inn on the Lane $65, Super 8 Motel $45 & $49, Days Inn $36, Red Roof Inn $49.49 & $53.99, and Fairfield In by Marriott $69. There is a shuttle that goes between the hospital and these hotels. The shuttle runs Monday-Friday 7:00am - 9:00pm. I cannot recommend any of them because I stay with my cousins who live close to the hospital, therefore I have never stayed in any of these hotels. They do charge to park there, however, they offer reduced rates parking passes which can be purchased at the Park and Ride desk in the Hall lobby. A 7 day pass is $21. The first pass must be purchased for a minimum of 5 days and additional passes can be purchased for $3 per day. My husband's doctor is E. Ellison. He is the chief of surgery there. If I can answer any other questions for you, please let me know. My dad was treated at the 7 years ago for bladder cancer and he is still doing very well today. I will let you know more about our experience after we come back. > > Best of luck to you my friend, > Donna M. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Hi ; > Your husband is VERY lucky that treatment has worked so well and he > is in the fortunate " 6-8% --- thanks, we feel God is watching over us, even tho this is a painful way to go. (stresswise as well) Can you 'plain to me, why are the lymph nodes part of the problem (and, in unknown issues, if they can be removed, what then, does the body do to replace what was there to funcion?? > That is roughly my GUESS as to how a doctor would answer, but be sure > you ask one!!! You got it friend, if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't use up 6 months, but hear what you say too. Nothing is as sure as this " when the dice are rolled " shoot game! ( " until they open him up " )This chemo treatment is perhaps, killing the cancer cells in the nodes too? (And wouldn't be needed later for that after surgery, even for a period of time??) Heard of a new term from Kathy O concerning SS disability benefits. The mets are classified as " illness until death " there, really scary..... Love you take all the interest and time you do with us and show you care we get as much knowledge as possible, with your research and input, Thanks (TONS) again, Betty B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Hi ; > Your husband is VERY lucky that treatment has worked so well and he > is in the fortunate " 6-8% --- thanks, we feel God is watching over us, even tho this is a painful way to go. (stresswise as well) Can you 'plain to me, why are the lymph nodes part of the problem (and, in unknown issues, if they can be removed, what then, does the body do to replace what was there to funcion?? > That is roughly my GUESS as to how a doctor would answer, but be sure > you ask one!!! You got it friend, if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't use up 6 months, but hear what you say too. Nothing is as sure as this " when the dice are rolled " shoot game! ( " until they open him up " )This chemo treatment is perhaps, killing the cancer cells in the nodes too? (And wouldn't be needed later for that after surgery, even for a period of time??) Heard of a new term from Kathy O concerning SS disability benefits. The mets are classified as " illness until death " there, really scary..... Love you take all the interest and time you do with us and show you care we get as much knowledge as possible, with your research and input, Thanks (TONS) again, Betty B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 <<if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't use up 6 months>> You know, the more I think about this it seems somewhat strange that they wouldn't do at least the SAME chemo timing, etc. as they would for a stage III. Now can you remind me of your husbands situation again...has he had surgery to remove the primary yet? If so, they already know if cancer is/is not in nodes, if not, they cannot say (scans cannot be used to determine nodal status). <<why are the lymph nodes part of the problem (and, in unknown issues, if they can be removed, what then, does the body do to replace what was there to funcion??>> Cancer spreads from the primary in (one or more) of 3 ways: hematologic (in the blood), lymphatic (in the lymph system), or by " direct extension " (tumor breaks thru colon & spreads by direct contact). Direct extension is the " best " type of spread because the cancer is still considered " localized " & therefore still potentially curable. I sure hope that is what your husband has!!!! Lymphatic or hematologic spread is " worse " , because then the chances are high that there are other hidden mets/micromets besides the obvious seen on scans or during surgery. They remove a number of nodes near the primary during the colon surgery, but the abdomen has a HUGE number of nodes relative to other parts of the body so I think you don't notice much in terms of functionality http://www.deeptissue.com/learn/systems/lymph/ldrain.htm HOWEVER, when they remove nodes for other cancers such as breast it CAN actually cause problems but I have never heard of this for CC http://oesi.nci.nih.gov/aboutbc/treatment-lymph.html If the cancer escapes beyond the nodes around the primary tumor, it could basically be ANYWHERE in the lymph system between the primary and where it was found...they can't cut out the entire lymph system (!) so that is why the surgeons SAY no use to bother with surgery once cancer is detected in distant nodes (although it seems to me it won't hurt/might help to remove any disease seen on scans, even if in nodes). In THEORY systemic chemo should be able to " kill " cancer cells anywhere...but in PRACTICE its ability to do this enough to CURE the patient appears limited to stage III and maybe a small percentage of stage IV's. Basically, it would appear if cancer spread is beyond the nodes right around the primary and/or the liver, chemo somehow for most cases does not seem able to kill EVERY last cancer cell in the body & therefore cure the patient (even if it can sometimes shrink tumors on scans). That being as it may...have you thought about getting a second opinion on chemo for your husband? Because chemo has worked so well for him, it would be a real shame to reduce the likelihood of its helping achieve a cure along with the other things he's doing by leaving off an extra month or two. I wonder what Sugarbaker would say about this... Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2003 Report Share Posted February 2, 2003 <<if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't use up 6 months>> You know, the more I think about this it seems somewhat strange that they wouldn't do at least the SAME chemo timing, etc. as they would for a stage III. Now can you remind me of your husbands situation again...has he had surgery to remove the primary yet? If so, they already know if cancer is/is not in nodes, if not, they cannot say (scans cannot be used to determine nodal status). <<why are the lymph nodes part of the problem (and, in unknown issues, if they can be removed, what then, does the body do to replace what was there to funcion??>> Cancer spreads from the primary in (one or more) of 3 ways: hematologic (in the blood), lymphatic (in the lymph system), or by " direct extension " (tumor breaks thru colon & spreads by direct contact). Direct extension is the " best " type of spread because the cancer is still considered " localized " & therefore still potentially curable. I sure hope that is what your husband has!!!! Lymphatic or hematologic spread is " worse " , because then the chances are high that there are other hidden mets/micromets besides the obvious seen on scans or during surgery. They remove a number of nodes near the primary during the colon surgery, but the abdomen has a HUGE number of nodes relative to other parts of the body so I think you don't notice much in terms of functionality http://www.deeptissue.com/learn/systems/lymph/ldrain.htm HOWEVER, when they remove nodes for other cancers such as breast it CAN actually cause problems but I have never heard of this for CC http://oesi.nci.nih.gov/aboutbc/treatment-lymph.html If the cancer escapes beyond the nodes around the primary tumor, it could basically be ANYWHERE in the lymph system between the primary and where it was found...they can't cut out the entire lymph system (!) so that is why the surgeons SAY no use to bother with surgery once cancer is detected in distant nodes (although it seems to me it won't hurt/might help to remove any disease seen on scans, even if in nodes). In THEORY systemic chemo should be able to " kill " cancer cells anywhere...but in PRACTICE its ability to do this enough to CURE the patient appears limited to stage III and maybe a small percentage of stage IV's. Basically, it would appear if cancer spread is beyond the nodes right around the primary and/or the liver, chemo somehow for most cases does not seem able to kill EVERY last cancer cell in the body & therefore cure the patient (even if it can sometimes shrink tumors on scans). That being as it may...have you thought about getting a second opinion on chemo for your husband? Because chemo has worked so well for him, it would be a real shame to reduce the likelihood of its helping achieve a cure along with the other things he's doing by leaving off an extra month or two. I wonder what Sugarbaker would say about this... Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2003 Report Share Posted March 5, 2003 > Hi Betty, > I'm wondering if your husband might have a cementoma. --- I tried to get him to go to the dentist at the start of all of this, and he said wait. He didn't want further poking and or whatever. Will let you know when (later) we find out. Thanks for the informaiton. Always the Best, Betty B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2003 Report Share Posted May 3, 2003 " Kathy " <oconnor@b...> wrote: > Hi Betty, > Mets to lungs, etc. The day of the > event, she had just had her 158th chemo treatment! Yes, that's > 158. She has been on chemo pretty much constantly for almost five > years! ----- Far better than getting ill and some of the other major debilatating occurances I would guess (but maybe not too, some of the effects are pretty rough. Have heard many people hosp. for infection and dies as result of chemo treatment) It is good to hear this tho, for knowing some had that many treatments and still have it in remission..... might let him know of your news in a bit. Enough bad news lately, want to see how he does on this again. Thanks for the info, Betty B. ps. Has anyone ever tried that Noni juice? My neice started selling it, saying it helped her headaches considerably. (and long list of things it " helps " http://noniinfo.8k.com/ yet it is also in quackwatch (multi level marketing)however too, it is listed at http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve & db=PubMed & list_uids=11795436 & dopt=Abstract so just wondering if anyone has tried it and did they feel better?? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2003 Report Share Posted May 8, 2003 i wish to unsubscribe as of today thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2003 Report Share Posted May 11, 2003 Well, this guy basically says you can do whatever you want...from " nothing " to mega tox Camptosar/Oxaliplatin/5-FU combo (shudder!). In the past, he has admitted he has no idea what is " best " (which is at least honest. Unfortunately, the oncs who CLAIM to know the " best " are usually blowing smoke lol!). Given " palliative " course, I lean heavily towards the quality of life direction...minimal chemo (such as Xeloda) which is likely to be tolerable w/ few side effects. Kinda curious just to hear his comments about the current situation, now that surgery is out of the question. Have not really had a chance to discuss with him since being booted out the surgeon's door! Best, > ---This is to ,,,,,,, (not meaning fighting what they offer is > bad, just that this doctor better be able to reduce it to writing to > prove what he offers to you, as we know you aren't going to " yes sir " > him like over 90% of his patients do for sure) > > So now you wait a bit more, monday will come fast. You are not only > > an informed customer of your doc, you might just be a bit > > antagonistic and try to fight what he might offer?? Hummm, think > > meeting you for him must have been a good thing too. Trust you will > > listen and then jump in, really hard to do when you know that life > > depends on it and trail and error might not be the best way to hit > on > > this. HOWEVER< we know that is what they are doing in many of the > > instances anyway!! > > Best possible choices to you, as Always, Betty B. > > Quote Link to comment Share on other sites More sharing options...
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