Bill

There are several possible causes for KH's insomnia but your comments about his pain pills caught my attention. If his pain med was an opiate and it was stopped abruptly or even dosage tapered that will cause insomnia. And, minor tranquilizers or mild sleep meds usually won't do much to alleviate insomnia from this cause. If the insomnia is due to opiate withdrawal, resumption of his pain med back to the approximate regular daily dosage will usually alleviate it. This is not being recommended as a remedy just a possible cause. Ask the doc to consider this if other possible causes are ruled out. If opiates are no longer needed they should be stopped by means of a slow taper with a minor tranquilizer ( like Xanax ) for some symptomatic relief. But, insomnia is a big problem for just about everyone coming off of extended opiate usage. JMO

Joyce : I'm surprised to read this position by MD Anderson. Do you happen to have a web link to the clinical trial(s) or pertinent clinical data that is being used to support this position ? Maybe I missed it. The reason that I'm surprised by this is because all of the clinical trial data that I'm aware of re: Tarceva / Avastin vs. Avastin / various chemo combinations has shown no clincally significant difference in survival rate one over the other. Even the press releases following the ASCO meeting mentioned this comparable response in survival rate. Thanks.

Hi Becky : It's a local south county group of volunteers and past / present cancer patients. All cancers are represented, not just LC. I think that the group was started by a local med onc's wife and a breast cancer patient that is 4 years into remission. At least that's how it appeared to me when they approached my wife. All very nice and uplifting people. These volunteers devote alot of time and attention ( and expensive food ! ) to make the chemo room a pleasant experience.

Just curious as your group was kind enough to include my wife even though she hasn't been a chemo room regular since starting Tarceva in March. ( She will be there this coming Tuesday morning for a dr. visit and Zometa ).

Fay : I just noticed. According to your 7/22/05 bio entry it looks like cancer progression.I could be wrong about the dating, but I thought that I read somewhere that you just had some scan(s) performed that would be even more recent than 7/22/05. Please clarify for us as to your current CA status if you wouldn't mind. Thanks.

I'm very sorry to hear about this. Did Dr. Sapra admit Alex to Hoag ? If not, and if City of Hope isn't feasible, I urge you to bring Alex directly to Hoag's cancer center w/o delay. Sapra is on-staff at Hoag which is your ticket into their cancer center. Also, I urge you to ask Sapra about tx options available thru Newport Diagnostic Center. Hoping that Alex pulls off a miracle.

Amanda : My wife is currently receiving this combination. She has been on Tarceva since 3/3/05. If you're interested in her response to the drug you can do a search of my posts for updates. The Avastin was just added so I have no feedback to offer on that. Good luck.

Thanks to all for the kind words. RE: the new aggressive tx attitude, let me say this about that. It's disturbing to me that when my wife was sickest and needed aggressive tx the most she didn't receive it. A constant battle. She was even encouraged to call it quits this past Feb. This was just a couple of weeks prior to her rapid decline that led to her hospitalization before starting Tarceva. Now that she has substantially improved and has been " restaged " aggressive tx is being provided. Even overdoing it a bit like suggesting RFA on her primary tumor then deciding to delay that idea until the next scan update.Her latest chemo regimen was submitted to her carrier's MRC and approved within 24 hours. This included her med onc following up the faxed prior authorization request with a personal phone call !

FYI : My wife's latest CT scan showed NED for her abdomen and pelvis. The single liver tumor that she has had since dx is gone. No more adrenal abnormality noted either. But, her lung CT scan shows unchanged / stable vs. her April CT scan. Good news but her med onc isn't satisfied and wants to try a one-two punch to hopefully finish off the remainder of her primary lung tumor and any active cancer cells that may remain in those numerous small lung nodules. Therefore, he's added Avastin to her Tarceva regimen.

Tina : I already told you what needs to be done. Actually, if Charlie's med onc had been on top of it he or she would have anticipated this denial and been prepared to provide an argument in support of Charlie NEEDING Avastin. The appeals process varies but the patient usually has the right to appeal such a denial. But, as I stated in my other reply, this appeal should be coming from Charlie's med onc. He or she can provide the necessary medical details, supporting clinical data, influence, etc. to push it thru. Prior to my wife's dx I was a member of a MRC and I saw lots of these appeals. These appeals can be pushed thru very quickly when you've got the doctor's support and he's prepared to say the right things. To be blunt about it, Charlie's med onc needs to step up to the plate and convincingly argue that Charlie NEEDS AVASTIN OR ELSE ... Good luck.

Thanks to all for the replies. I have my wife's 6/25 hematology reports. Both her weekly CBC and her monthly comprehensive metabolic panel. Unfortunately, lots of bad looking stuff on the comprehensive metabolic panel report, mainly pointing to liver dysfunction. Her RBCs and related values (h'globin, h'crit, etc. ) on her CBC took a hit but that's par for the course and was expected. No surprise there. The panel report is a mess. It shows her total bilirubin and globulin high, total protein and albumin low. Her albumin dropped all the way down to 3.1. Her A/G ratio is now less than 1. To add to the emotional trauma I get a call out of the blue last night from an acquaitance who's sister has late stage NSCLC. Multiple complications including her sister's albumin plunged to ~ 1.5. She swelled up like a balloon, they hospitalized her yesterday and she died ! Don't known what to make of this mess. I know that pain meds ( esp. with acetaminophen ) and Tarceva are associated with liver damage or at least distortion of some liver function values. My wife's regular treating physicians are of little help here as they pay little to no attention to these #s. The tests are ordered as a routine matter and the results are filed away. Her hemoglobin level is monitored and noted for administration and billing of Procrit, of course. Every time I question a treating physician or OCN about an abnormal lab value I get the same answer. Don't concern yourself much with these #s as they are all over the map with cancer patients. She sees her PCP on 6/30. I'll mention this to him but I expect the same useless reply. For those of you with access to your lab work and that have an interest in these #s, please post some of your data and / or any input that you've gotten on the subject from your docs. Thanks. This has turned into a very disturbing situation.

Cliffhanger # 1 is tomorrow ( Saturday ) as my wife gets her monthly comprehensive metabolic panel along with her weekly CBC. Waiting on the results of this month's comprehensive metabolic panel is particularly nerveracking. Her ALP level didn't drop last month ( vs. the April value ). It actually went up a few points. This followed a dramatic and encouraging drop in her ALP during March and April. Also, her bilirubin level unexpectedly shot up last month ( more than double the previous month's level ). Her other liver enzymes remained relatively unchanged but the big bilirubin jump was still surprising and upsetting. Made us think about the large quantity of acetaminophen consumed with the Vicodin ES. It has been reported that Tarceva can cause transient abnormalities in liver function values. Given the alternatives I hope that this is the cause. Anybody on Tarceva ( or Iressa ) seen their bilirubin or other liver function values suddenly escalate ? If her bilirubin level doesn't drop back down with tomorrow's report we have another issue to face. Cliffhanger # 2 is the aforementioned CT scans scheduled for 6/28.

Peggy : Thanks for asking. The time for that important 3 month follow-up scan that I mentioned about back in March has now arrived. Her med onc has ordered a CT scan of her chest / abd / pelvis for the follow up instead of the expected PET scan. Don't know why he changed his mind but I'm letting it slide for now as I don't want to rock the boat and the CT scan results should provide an adequate update. RE: my wife's low back / hip pain, she still has it and the actual cause is still unknown. Depending on the scan results I may have to shake things up. Assuming no evidence of active cancer in the area, my hunch is that her persistent low back / hip pain is largely residual surgical pain, perhaps muscle tissue rubbing against those rods implanted in her back. The dramatic respiratory improvement that she experienced after starting Tarceva in March has held so far. BTW, the skin rash ( that I reported had disappeared ) has returned but this time it's primarily on her torso ( esp. back ) and there's been very little rash on her face. Her CT scan is scheduled for 6/28. I'll report the results after I obtain a copy of the rad report.

http://www.jeffersonhospital.org/news/2 ... 10954.html

Elaine : I don't understand why securing a copy of your rad report is a problem unless the ordering physician has a reputation at the imaging facility for insisting that patients not see reports until he does. Sometimes a medical records dept. will withhold release of a new report based on this reasoning but that's why you don't go thru medical records to make such a request. Go to, or communicate directly with, the radiology dept. If necessary state that you have multiple upcoming doctor appts. scheduled and you need a personal copy of the report in hand. I've never had a problem getting my wife's reports ( radiology and blood ) as soon as available. Same day on blood tests and within ~ 48 hours on radiology. Sometimes I'll even request a draft copy of a rad report if I'm overly anxious and don't want to wait for a finalized report. I either have the report faxed to me or I pick it up at the rad dept.

Sue : IMO if there hasn't been a significant improvement in Mike's neurological symptoms by now then Famvir has little or nothing to do with causing them. Famvir-induced neurological symptoms should be transitory and, IMO, significantly diminished if not completely gone this many days out even in the presence of renal insufficiency. The only remaining scenario that I can think of where Famvir could be the culprit at this point is if Mike was overdosed. Maybe double check the dosage that he was receiving. BTW, you mentioned that Mike has been RX'd antipsychotic drugs. As a group, these drugs possess significant anticholinergic side effects. Actually, as a group antipsychotics are loaded with adverse side effects and drug interactions and the onset of tx action can be frustratingly slow. You can do an on-line search and find lists and descriptions of both peripheral and central anticholinergic side effects. Also, be on the look-out for what are called extrapyramidal side effects. These adverse effects could be problematic given Mike's persistent neurological symptoms and general health condition. But, this should be manageable if the drug tx is closely monitored. This is a situation where the drug brought in to resolve original symptoms can create some of the same or similar symptoms. Don't assume that the manufacturers' claims of fewer such adverse effects with their newer class of antipsychotic drug over " traditional " antipsychotic drugs is necessarily clinically significant. This includes Risperdal. Generally speaking, I agree with the comments that others have made re: corticosteroids. Hope this helps. JMO. Good luck.

The last time that Bo and I communicated was by e-mail on 5/24/05. He spoke confidently that his health was continuing to improve and that he might even cut back on cancer tx due to this sustained improvement. Some of the personal clinical data ( lab results, scans, etc. ) that he has shared with me has been very encouraging.

Larry : I have spoken with many cancer patients, OCNs, lab techs and other HCPs about lab values, including hemoglobin. Many of the cancer patients ( undergoing chemo ) had hemoglobin values in the 6.5 - 7.5 range. All of these patients appeared to me to be energetic and they claimed to feel good. No tx mentioned or observed other than Procrit. On one occasion I did observe one guy receiving supplemental iron ( with a 6.5 hemoglobin ). My wife's hemoglobin averages around the mid-elevens and in the last few months it has jumped into the 12 - 13 range. No weekly Procrit for her unless her hemoglobin drops below 12.

Exactly how LOW have her hemoglobin counts been ?

Tarceva " cured " my wife's toenail fungal infection.

IMO what's hurting the stats and making the percentages look bad is that these drugs ( Tarceva & Iressa ) are being RX'd for cancer patients outside of the original responder target group. A quick facts search on Tarceva and Iressa and you can find that criteria. Both drugs continue to perform very well within that target group. The stats are very impressive. Unfortunately, it is a narrow target group. For instance, last I checked Iressa results in Japan continue to be stellar. I offered my wife's Tarceva experience as a test case because she meets ALL responder criteria. Her initial response to Tarceva was dramatic improvement. Now only time will tell if this improvement is sustainable. So far her improvement seems to be holding ( esp. since her skin rash has returned ) but more scans in another month or so will be needed to confirm this.

I checked with some of my colleagues. In my area a 30-day supply of Tarceva 150mg. has increased by ~ $350 over the last 3 months. If the price keeps climbing like this I expect closer prior authorization scrutiny by MRC's. I still think that Iressa got a bum rap. I hope that AZN can turn the drug's image around. It would provide some competition and help price stability. There could be a formulation issue involved with Iressa by my gut tells me that the drug just fell victim to some of the pitfalls of being the first one out of the gate and maybe some poorly designed clinical trials. JMO http://biz.yahoo.com/bw/050602/25083.html?.v=1

/////////////// Frank : JMO but if you go with Tarceva, and assuming that you've got some clearly identifiable symptoms ( esp. respiratory ), you should see a dramatic improvement in these symptoms within a week or so if Tarceva is going to WORK and give you the ASAP improvement that you need. If there's no noticeable improvement in symptoms within this time frame ( esp. respiratory ) I would start pressing your med onc for a change. Best of luck to you.

I'm aware of the liver function test abnormalities that can occur with Tarceva and Iressa. Has anybody that has taken, or is currently taking, either of these drugs actually experienced an elevation in their AST and / or ALT and / or ALP and / or bilirubin that was attributable to the drug ? If so, please provide some detail as to the elevation(s) involved and the outcome ? Thanks.

Thanks for the suggestions but I've already contacted the various manufacturers and I even made my inquiries as a " healthcare professional " ( which I am ) in an attempt to get a better response. No luck. These people can tell you alot about marketing but nothing about cold storage. Just educated guesses that it's no big deal. I've even exhausted all of my professional contacts and reference sources. Nothing. Just thought I'd take a shot at asking the board if someone taking Tarceva ( or Iressa ) had personally dealt with this issue. Probably nothing to worry about but I'm too close to the situation to brush it off so quickly w/o digging deeper. BTW, since we are on the topic of drug storage, and many cancer-related pharmaceuticals must be kept refrigerated, base on my experience just about the # 1 drug error that I've seen in the clinical setting over the years is failure to refrigerate pharmaceuticals that require refrigeration. This is a major problem that is, unfortunately, easily covered up once discovered. Sometimes to the patient's detriment. So, be vigilante.