Bill

///////////////// Thanks to all for the replies. I'd like to hear more. The reasoning behind this sudden decision to implant a Port-A-Cath after several months of peripheral vein admin. of Gemzar / carbo is still somewhat unclear. But, it appears ( based on the OCN's comments ) that my wife's med onc is of the opinion that her risk of peripheral vein inflammation is now greater with the new chemo regimen ( every other week Gemzar / Navelbine ). At this stage I have to trust his judgement and motivation on this issue. She is in poor condition and maybe they can't risk a setback in tx due to a vein complication. I imagine that most of you would consider this move beneficial to her anyway.

Anybody with a Port-A-Cath had any complications and / or maintenance issues ? Has weekly maintenance by your OCN been sufficient to keep your Port-A-Cath safe and effective ? BTW, my wife has had no peripheral vein problems after months of receiving Gemzar / carboplatin. Suddenly, her med onc has ordered her to get a Port-A-Cath implanted. They didn't even ask her. They set up the appointment then phoned us with the news and details. The carboplatin has been dropped and Navelbine added so the new chemo regimen is Gemzar / Navelbine. One of her OCNs states that Navelbine is the reason for this sudden decision. ( ???? )

//////////////////// Peggy : Thanks for the reply. Unfortunately, the appointment didn't go well. My wife's cancer has progressed, esp. in her lungs, and her med onc basically told her that it's curtains. He strongly suggested hospice w/o directly saying so but he did offer to switch her from Gemzar / carboplatin to Gemzar / Navelbine IF she wanted to give that a try ( no mention of Tarceva ). A surprising and upsetting attitude to hear from him considering that the Gemzar / carbo failure was her first-line tx. Without changing med oncs she doesn't have much choice but to try the Gemzar / Navelbine. But, I will watch developments closely as she has no more time to waste. Any worsening of symptoms or a bad scan and I stop the tx. Then, he either offers something like Tarceva or we will be forced to go elsewhere. ( This is why I asked the question about coordinating a switch in med oncs w/o a prolonged and dangerous delay in tx when time is so critical. Bill

Anybody receive this combo ? If so, how were the results ? Also, can you tell me your dosage for each drug and the administration schedule that you had for this combo tx ? Thanks.

A couple of questions for those of you with experience switching med oncs. How do you coordinate the switch without creating a disruption or a dangerous delay in treatment and related care ? For instance, at my wife's med onc group I'm hearing that scheduling for new patients is taking up to 8 weeks. Additionally, what assurance do you have that the new med oncologist will see things more your way and not end up being just like the one that you just left ? Thanks.

Much thanks to all for the replies. All of what you have stated will be considered by me ( us ). No easy way to approach the med onc about this. Happy talk time is over. I see that " recurrence " theme raising it's ugly head again. Because my wife's updated CT scan of HER CHEST was delayed ( a full 5 months vs. the usual 3 month interval ) it now makes me wonder if there was enough elapsed time for her condition to initially improve then worsen. The speed of these recurrences is very scary. Also, I'm now wondering about that Procrit inducing cancer study that I iniitally disregarded. What an unsettling mess ! A real confidence buster. The wife is emotionally defeated and comments that Gemzar left her with a painfully bad case of radiation recall but not much else. I may have posted this once in the past but it's worth a repeat. I asked my wife's neurosurgeon after her L-spine surgeries ( tumor resection ) for his opinion as to the ~ elapsed time for the metastatic process to have occurred. He stunned me by saying ~ 3 months. Another surgeon speculated that it was ~ a 6 month process. A very rapid process in either case. If these guys opinions are accurate it's no wonder that catching cancer before it metastasizes is so difficult. Looks like I lean all over everybody to take action starting tomorrow. This includes pressuring her rad onc and neurosurgeon to pressure her med onc into action. Thanks again to all.

My wife's CT scan results delivered her grim news. Verbatim read > " Diffuse increase in size and number of EXTREMELY NUMEROUS ( ~ 200 ) Multiple Bilateral Pulmonary Nodules and slight increase in size of left subapical soft tissue mass ( primary tumor ) consistent with progression of metastatic neoplastic disease. Left AP window lympjadenopathy subjacent to the left subapical soft tissue mass ". I spoke with the rad onc Saturday. He stated that the tumor spread is too extensive to perform any radiation. Ditto the neurosurgeon. They say it's chemo or nothing. I phone the med onc Monday morning and speak my mind. He completely blew this lung tumor progression. Amateurish mistake by incorrectly assuming that she and her lungs were doing fine because she had no lung symptoms. Obviously, no more Gemzar / carbo if I have anything to say about it. I'm familiar with Iressa / Tarceva tx and results. But, what about Taxol and Taxotere and any other readily available alternate drugs. ? Anybody switch to one of these and have success ? IMO my wife certainly won't be asymptomatic in her lungs for much longer if this situation isn't reversed. On top of this lung tumor invasion, she also has tumor progression in her L-spine. Her brain is slightly improved and the other cancerous areas in her body look to be essentially unchanged compared against previous Aug & Sept '04 scans. Thanks for any input.

////////////////// Don : At this writing I don't know what the next move will be. My wife had updated MRIs of her brain and spine last week and updated CT scans of her chest, abdomen and pelvis this morning. Her treatment has been put on hold until her three doctors ( neurosurgeon, med onc, rad onc ) can review all of this and plan a strategy. Radiation of her pelvis is likely. Her lower L-spine, sacrum and pelvis have been devastated by tumors. Two surgeries and these areas are still under attack. On film her pelvis looks like the surface of the moon. The latest MRI radiology reports comfirm that this area is worsening. Interestingly, the area least impacted by chemo ( her brain ) continues to be the bright spot. ( She received WBR in late May ~ early June '04 ). Compared against Sept. '04 MRI results, her brain MRI showed some modest shrinkage in two of her brain tumors. Two other brain tumors are unchanged. She takes b/w 4 to 8 Vicodin ES daily for the low back / hip pain. Overall, disappointing results considering ~ 8 months of chemo, Zometa, etc.

Glad to hear that your symptoms are minimal but based on my experience, observations and discussions with tx drs. re: LC specifically and cancer generally, symptoms aren't a very reliable basis for formulating an accurate opinion about prognosis. Your prognosis has more to do with your cancer type, stage, etc. My wife has stage 4 NSCLC with mets to various locations but she has no symptoms other than low back / hip pain. I initially thought that this was highly unusual and a good sign. Her drs. agree that it's a good sign but state that it's not that unusual and it doesn't alter her prognosis. In my estimation ~ 60% of the patients that we see at my wife's onc office appear as healthy as an ox and many of them state so. My wife constantly tells me that she'd feel great if the low back / hip pain can be eliminated ( maybe with radiation ). Good luck.

Has anybody out there experienced a noticeable ( and maybe confirmed by scans ) improvement in their condition after switching to a diet rich in alkaline foods ? ( BTW, I would expect such a diet to include a modest amount of acidic / sugar related foods. ) Thanks.

//////////////////////// Peggy et al : I have also noticed that tumor measurements are not mentioned very much in my wife's more recent rad reports. Also, my wife just had updated MRIs of her brain and C-T-L spine. Overall, better than average quality rad reports this time but, once again, no specifics on the sacrum / pelvic area other than the usual " difuse bony metastatic disease " observed. However, I guess I have to give the radiologist a pass on this one since the comments were made secondary to his L-spine reading. Same goes for some general lung tumor comments that he made secondary to his T-spine read. BUT, the previous MRI rad reports ( ~ 3 months prior to this ) were terrible. Very poorly written, very little detail ( literally some one-liners ! ), the rad completely forgot to read the T-spine and he failed to do a comparison report against the previous MRIs on file right there in the same hospital from ~ 3 months earlier ! These reports were largely useless. The only saving Grace was that the neurosurgeon does his own read. But, the med onc and rad onc had a fit. I'm not 100% sure why her med onc and rad onc are very reluctant to do their own reads and offer opinion. The med onc relies completely on the rad reports and refuses to even look at the films. The rad onc is more flexible and will look at the films and discuss them in a limited way. I think that there could be a liability concern mixed in there. The rad onc did state once to us that he isn't the radiologist, it isn't his job or expertise to read films and he was furious that a poorly written rad report had put him on the spot. As I stated, CT scans to be scheduled within the next week. Can't wait to see what those reports look like ! LOL !

////////////////// My wife will be getting updated CT scans ( chest / abd / pelvis ) in the next week or so. Hopefully, this next radiology report will provide some much needed detail on her ( bony ) pelvic condition. If it doesn't I'll have to step up the pressure. Especially, I'd like to know if the Zometa she's been receiving since July '04 is helping. Some of the past radiology reports have been well written, thorough and provided good comparison commentary relating to other cancerous areas but for some reason the ( bony ) pelvic description is always just a general statement as I mentioned above. Thanks again to all for the input.

Thanks for the additional input. Here's the problem that we keep having. My wife has had several x-rays, CT scans and MRIs that include her lower spine and pelvis. But, for some reason it's the same old story each time when it comes to describing and detailing the bone damage in her pelvic area. The radiologist only makes general comments about " diffuse " or " extensive " bony damage. Never any comparisons or specific details offered about this area. To add to the frustration, the med onc and rad onc really don't want to review the films and offer an opinion. So, what we have after 8 months of imaging is that the pelvis is still described as having extensive / diffuse bony damage with no commentary as to whether or not this damage is getting better, worse or unchanged.

//////////////// Bo : Thanks for the reply. I am interested in determining if an oncologist or radiologist can distinguish the difference between old vs. new tumor damage to bone w/o having any prior films to compare against. You may be on to something re: old tumor damage having a healed look vs. new ( active ) damage having a different look. Hopefully, I can get something definitive on this subject.

Has anybody ever been told how, or even if, one can distinguish between old ( inactive ) tumor damage to bone vs. new ( active ) tumor damage to bone when viewing x-ray, CT scan and MRI films ? If it can't be determined directly from viewing these films are you aware of what alternative methods can be utilized to assist in this determination ? Thanks.

Thanks to all for the replies. To add to my wife's frustration, she has no other identifiable symptoms head to toe. As she constantly states to me ' if it wasn't for this back / hip pain I'd feel great '. This one symptom is really dragging her down. Radiology reports on her updated brain and spine MRIs that she had performed this week were just released this morning ( Saturday ). Net positive results except, as expected, for " diffuse bony metastatic involvement in the lower lumbar spine, sacrum and pelvis ". Pretty much confirms why she is continuing to experience so much hip pain.

A couple of questions for those of you that have mets to the pelvic / hip bone area. With treatment ( such as chemo and Zometa ) did the PAIN lessen or disappear ? Also, did any of you receive radiation to the pelvic area as part of your treatment for PAIN relief ? If so, did it help ? My wife's hip PAIN is persisting. She's been receving chemo and Zometa since June ' 04. She hasn't had her pelvic area radiated. The PAIN isn't getting any worse but it's not getting any better, either. Also, her situation is complicated by the fact that she not only has cancer and significant damage in her pelvic area but she also had major lower spine surgery which may or may not be contributing PAIN in that area. TIA for any input on this issue.

//////////////////////// Public Release: 11-Jan-2005 JAMA High sugar levels increase cancer and mortality risk According to researchers from Johns Hopkins Bloomberg School of Public Health and Yonsei University in Seoul, Korea, elevated blood sugar levels and diabetes are risk factors for developing severa types of cancer and mortality. NIH/National Cancer Institute Contact: Kenna L. Lowe paffairs@jhsph.edu 410-955-6878 Johns Hopkins University Bloomberg School of Public Health ................. Public Release: 11-Jan-2005 JAMA Elevated glucose levels and diabetes are associated with increased risk for cancer New research involving more than one million people indicates that having high fasting serum glucose levels and diabetes are risk factors for several major cancers, according to a study in the January 12 issue of JAMA. Contact: Tim Parsons 410-955-7619 JAMA and Archives Journals Website

/////////////////// Worrying about and scrutinizing every symptom goes with the territory. No matter how seemingly insignificant and esp. if persistent and / or a new symptom. My wife's med onc told her to not dwell on symptoms. Yet, he depends almost exclusively on her symptoms and her description of her symptoms when appraising her condition and progress. One time this same med onc promptly ordered a CT scan of my wife's brain when she happened to mention to him that she was yawning more than normal. So, the advice is don't dwell on symptoms even though they are of paramount importance. Have fun rationalizing that.

///////////////// Fay : Best of luck in coping with the adverse side effects at Tarceva 150mg. IMO maintaining the 150mg. dosage level is key to the drug's effectiveness.

IMO Tarceva 100mg. will be proven to be bioequivalent to Iressa 250mg.

I noticed that my wife's onc med group has dropped Iressa from it's drug list on the patient TX form.

http://biz.yahoo.com/ap/050104/britain_ ... eca_4.html

I like Bo's attitude and back-to-basics strategy ( as stated here and on the alternative txs board ). Bo and my wife have many similarities in attitude as it pertains to health issues and battling cancer. A few months ago my wife took it upon herself to revise her diet. The shopping list is now dominated by fruits and vegetables. Lots of lettuce, oranges, apples, etc. I buy her some soy products also. She balances this with a small amount of candy and snacks. Very little red meat. Alot of chicken, fish and homemade soups and ramen. She says that the dietary changes have made her feel better. One big improvement that I have noticed since she changed her diet is that her battle with constipation is finally under control. Prior to the dietary changes she had a terrible time. The combination of Kytril - chemo - Vicodin ES with a " regular " diet caused her wicked constipation. Even caused her to be hospitalized on one ocassion. She still utilizes DSS and Senna ocassionally but there's been a big improvement. Weather permitting she does a short bask in the sun.