Bill

Thank you for the additional replies. What makes my question particularly puzzling is that the PET / CT tech himself can't answer this question. All of his answers are geared to the radiologist that will actually be reviewing the PET / CT imagery by computer. Therefore, this SUV setting that I'm asking about isn't an issue for the reading radiologist as he can adjust, zoom, focus, etc. right off of the computer to his liking. The problem is that the printed sheets that I bring to my wife's docs are fixed at the one setting. It would be nice to know what affect the SUV setting has on the imagery. Like John and I discussed. Different SUV setting #s may very well lighten or darken the images, lesions, artifacts, etc. Sort of makes the films of limited use to the docs that I hand them to if the SUV settings differ and the doc isn't able to factor that variable correctly into his analysis, esp. for comparison from one test to the next. I've notice with other imaging techniques, esp. x-ray, that the brightness / darkness of the image(s) can vary quite a bit from one exam to the next. My wife also has alot of metal in her back which gives off alot of streaking artifact effect in her spine. P.S. I noticed that my wife's PET prints have several settings imprinted on them but no SUV setting. Interestingly, her PET / CT prints have none of those PET settings imprinted. Just her basic I.D. with the SUV setting that I'm asking about. The format may vary from company to company. Her PET / CT scans were performed by Alliance Imaging, Inc. B

John >>> I am guessing that as the numbers goe up the spots will become brighter. As they go down they will be darker. Just a guess. John : Thanks for the educated guess. This is my thinking also. My wife had a PET / CT today. The SUV scale was set at 4.80 on the copy printed for us. Last Oct. ' 05 was her first PET / CT. The SUV scale was set at 5.85 on that printing. Today's body images on the film sheet appear to be overall darker compared to the Oct. film. The bad news to report is that this darker imagery is revealing numerous small to moderately sized spots in her lung fields, ribs, spine and pelvis ( varying degrees of black ). These were all previous problem areas that Tarveca resolved. If my fears are realized, this rad report will be loaded with bad news. Her med onc appt. has been moved up to next Tues. in anticipation of this. Rad report should be finalized and faxed by Monday. If not, her med onc will request a prelim report or wet read. This is very discouraging and, as with so many others, the changes are dramatic and so sudden. B

A question for those of you that have had more than one PET / CT scan or PET scan and have copies of the films in your possession. If you look on the far right edge of the film sheet there is an SUV setting #. It appears that this setting # is selected by the rad tech at the time he or she prints a copy of the films for the patient to take home. Are your SUV setting #s different from one scan to the next ? If so, have you noticed whether that setting # difference seems to make the images on the sheet darker, lighter or no change ? Thanks. B

Z : My wife rec'd Gemzar 1200mg. / carboplatin 200mg. ( 21-day cycle as I recall ) for ~ 7 to 8 months. Unfortunately, it did very little, if anything, to help her. Her condition, esp. lungs, slowly worsened over this time period. Good luck. Responses are so individualized this combo may work for you. Warning : Gemzar gives a pretty uncomfortable burn when administered by peripheral vein. Slowing the drip rate helps but too slow effects toxicity and / or tx effect. May talk to the doc about a port-a-cath. B

In the interest of a balanced evaluation of WBR risk : reward, I would add the following to those of you considering WBR and who are panicked by the dreadful outcomes that are being reported. Just as some may consider the dreadful outcomes to be somewhat overblown, IMO, WBR's effectiveness is overblown and it is not a cureall tx for brain mets. Reality is that WBR results vary from fantastic to nil. To the best of my recollection ( w/o reviewing her chronology of brain MRIs ) in my wife's case WBR modestly shrunk 2 of 4 identified mets and probably cleared up some " suspect " areas ( spots ). This condition remained static until she started Tarceva. The current dramatic improvement in her brain mets occurred after starting Tarceva in March ' 05. As to why her rad onc chose WBR, he gave the pat answer. Namely, too many mets to treat it any other way.

There's a stranger in our house .... and it's my wife ! It's very strange getting used to someone dear to you that's undergone a ( far less desirable ) personality change in addition to other mental / emotional changes. B

My wife has successfully used an intensive care topical cream to counter her Tarceva-induced dry and scaly skin with the exception of her feet. Her feet have an extremely hard, dry, scaly, crusty appearance. So far she has been relying on literally saturating her feet with the cream that she uses elsewhere. Helps some but really can't penetrate this skin very effectively. Has anybody found an OTC product that provides good / deep penetration to moisturize and help heal feet in this condition ? Thanks much for any suggestions. B

P.S. Based on my wife's hematological history with Tarceva, plus collateral information, total bilirubin elevation and albumin decline seem to be the two key liver function measures to watch in connection with Tarceva-induced hepatotoxicity. AST and ALT elevations are also mentioned in the medical literature but, as I stated in my previous post, these levels have remained essentially unchanged in my wife's case. ALP elevation is also mentioned in the literature but since my wife has or had bone mets ( and consequential bone damage ) I don't place much weight on this measure when I review her liver function levels. The manufacturer summarizes it this way : Hepatotoxicity Asymptomatic increases in liver transaminases have been observed in TARCEVA treated patients; therefore, periodic liver function testing (transaminases, bilirubin, and alkaline phosphatase) should be considered. Dose reduction or interruption of TARCEVA should be considered if changes in liver function are severe (see ADVERSE REACTIONS section). B

IMO long term use of Tarceva will result in some degree of hepatoxicity. My wife's liver function levels began slowly deteriorating about 60 ~ 90 days after starting treatment ( 3/3/05 ). For instance, her total bilirubin level has now tripled since 3/3/05 ( 0.4 to 1.2 mg/dL. ) and her albumin level has dropped and stayed below the reference range for several months now. Her AST and ALT have not been affected and have remained within the reference range. Some other reported total bilirubin levels that I'm aware of are much higher than my wife's. If your med onc hasn't already done so, I would urge any patient taking Tarceva for an extended period of time to request that your hematology panel include at least the basic liver function measures. Your basic CBC does not contain the information necessary to adequately evaluate liver function. B

GDPawel >>There are over 100 chemotherapeutic agents and hundreds in the pipeline, all of which have approximately the same probability of working. The tumors of different patients have different responses to chemotherapy. It would be highly desirable to know what drugs are effective against your particular cancer cells before these toxic agents are systemically administered into your body. It requires individualized treatment based on testing individual properties of each patient's cancer. ///////////////// IMO targeted therapy is the wave of the future. However, as we have already discovered, the therapeutic efficacy of targeted tx drugs are dependent on very specific patient ( responder ) critieria. Therefore, the testing that you speak of will eventually have to become mandatory. IMO, it's an economic reality as insurance companies will demand that tx be streamlined to best match patient criteria.

K : The fluid is most likely returning because the cause is the malignancy. That is, caused by the cancer vs. some other non-cancerous and successfully treated cause such as pneumonia. The one bout of chemo tx is either ineffective and / or it's simply too soon for the chemo to exert a therapeutic response against this particular process. Treatments to block or seal off this process are available but I will defer to those board members that have actually had one of these procedures performed. My wife had a 2 qt. malignant pleural effusion but it didn't return, presumably resolved at the cellular level as part of her dramatic response and improvement with Tarceva. Good luck. B

... that miracles do happen. A win is a win no matter how poor the performance. Can't take that away from them. IMO my local newspaper's above the fold sub-headline summarizes the game best - " Seahawks are undone by sloppy, ' bizarre ' effort ". IMO Bill Cowher should send a big thank you and get well gift to Carson Palmer or the Steelers wouldn't have even made it to the Super Bowl.

Joanie : IMO some degree of patient ( and caregiver ) depression is to be expected given the circumstances. Do you take any narcotic analgesics ? These drugs can cause depression. If you do, the litmus test is to see if the depression is lessened or resolved shortly after taking a scheduled dose of pain med and if the depression returns as time passes ( and the plasma-drug level drops ). If the depression is mild a minor tranquilizer like Xanax can be used with intermittent dosing to lessen or resolve the depression ( and anxiety ). Caution : Xanax will " boost " the effect of any narcotic analgesic that you may be taking. IMO unless the depression is clearly severe avoid the major tranquilizers and related anti-psychotic drugs. These drugs have a slow onset of action ( sometimes several weeks ~ oftentimes patient feels worse ), most work successfully only ~ 30% of the time, they are loaded with adverse side effects and drug interactions and are hard on the liver ( already overloaded with cancer-related drugs ). Good luck.

Trish : No surprise to me.This is typical behavior. I don't like dealing with the Cyberknife facility that my wife has utilized for similar reasons. Everything has to be done at their facility just as they prescribe. But, they are calling the shots so it's accept it or take a hike. I might add that my wife has had countless x-rays, MRIs, CTs, PET, PET / CT, you name it and the only billing problem that we have ever had with imaging reimbursement has been MRI billings from the Cyberknife facility. Way overbilled compared to the community norm. And, they are the only ones that charge for a set of films for the doc. $5 / sheet for MRIs. I manage to get the fee waived but only after some heavy complaining. Even the parking lot rate is outrageous. $1.50 per 15 minutes ( maybe because of the ocean view ! )

/////////// Just speaking about the medical oncology profession, most patients and caregivers realize that the typical medical oncologist practice is basically a referral-based RX concession. The Feds even allow an exception to the physician / RX legislation to protect the medical oncologist. Commonly referred to as the " oncology concession ". IMO a cancer cure, esp. a broadbased cure involving few drugs, would wipe out the practice of medical oncology as we know it. The chemo room is where the lion's share of their money is made. I'm ambivalent about this topic as I'm both a caregiver of a cancer patient and I'm a HCP who's financial livelihood is directly impacted by pharmaceutical trends and developments, most definitely including medical oncology.

John : Thanks much for the lung / breast cancer info. Have you ( or anyone else ) come across any info RE: the frequency of axillary lymph node involvement in NSCLC specifically or LC generally ? BTW, I wonder what the baseline or normal SUV is for a given area, such as an axillary lymph node ? Zero(0) or one ( 1 ) or what ? The only comparison of normal that I've ever seen in these rad reports is that a radiologist will sometimes comment that observed activity at a suspect location is similar to or comparable to that of surrounding tissue ( therefore presumably a favorable finding ). I'm aware that as a general rule SUVs above 3 or so are considered malignant but I've never seen or heard anything about " normal " SUV values. Bill

My wife's last PET / CT rad report startled us by mentioning for the first time activity spotted at her left axilla. But, the radiologist determined it to be a benign finding as the SUV was 1.1. I recall asking Dr. C about axillary lymph node involvement in lung cancer. He answered that such an occurrence was very unlikely because the axillary lymph nodes aren't in the metastatic pathway of LC. He could very well be correct but here's what I found out since. Obviously, we hope that this is a benign finding as the alternatives are LC progression or co-existing NSCLC and breast cancer. In my wife's case nothing is being done currently to rule out breast cancer. Her docs are brushing it off and want to wait for the next scan ( AS USUAL ) . Since this issue came up I have spoken with a couple of other physicians and an OCN experienced in oncology. They stated that it's not unusual for LC to involve one or more of the lymph nodes normally associated with breast cancer. So, both LC progression and co-existing LC / breast cancers, while not common, are possibilities. And, another individual sent me this info : Axillary lymph node enlargement Located in the axillae (arm pits). Lymphatic drainage: Arm, thoracic wall, breast Common causes: Infections, cat-scratch disease, lymphoma, breast cancer, silicone implants, brucellosis, melanoma Normally they are not felt. However, sometimes they are felt as small (less than 1cm in diameter), soft, non-tender in normal people. Large tender but mobile lymph nodes indicate infections or small wounds of the arm (as a skin infection or a cat scratch). Harder, fixed or matted axillary nodes often indicate malignancy usually from the lung or breast. Axillary lymphadenopathy should take into consideration systemic causes of lymph node enlargement as it could be an early manifestation of a more generalized lymphadenopathy. Some of the causes of axillary lymphadenopathy Bacterial localized infection, possibly somewhere in the arm or breast draining into the glands of the armpit, or infection within the armpit itself cat scratch disease ascending lymphangitis lymphadenitis, lymphangitis Viral infectious mononucleosis chickenpox herpes zoster (shingles) HIV disease (AIDS) Malignant Hodgkin's lymphoma non-Hodgkin's lymphoma leukemia Breast cancer Lung cancer Fungal sporotrichosis Antigenic smallpox vaccination typhoid vaccine measles, mumps, rubella vaccine (rare) allergic reaction possibly caused by sulfa drugs, iodine, or penicillin ( END ) Has anybody else dx'd with LC had any scans, PET or otherwise, identifying any lymphadenopathy typically associated with breast cancer ? Or, is there anybody out there with CO-EXISTING LC and breast cancer with corresponding lymphadenopathy ? Thanks.

I'm very sorry to read about your setback. I have a couple of suggestions re: your viscera pain. I'd urge you to request a consult with a hospital-based clinical pharmacist. The pain management dept. may have a clinical pharmacist on staff which would be even better. Explain your situation and maybe he or she can sort this out and get you some better pain relief. Advil and related products usually are ineffective against viscera pain and deep soft tissue pain generally speaking. The fact that this isn't so in your case, along with the poor response with narcotics, would be important to discuss with a drug expert such as an experienced clinical pharmacist. There are several combination products to consider and, if necessary, a specialty prescription product can be compounded for you. Also, some narcotic analgesics cause less gastrointestinal side effects than others. That would seem to be an important consideration in your case. Have you tried Demerol alone or in combo ? Good luck.

Greg : Thanks for remembering my wife's WBR experience and her status. An interesting attitude has emerged about her situation within her medical group. Her symptoms, primarily involving diminished S/T memory and intellect, are considered too limited to warrant any official neurological testing and tx. In other words, their message to us at this time is consider yourself lucky on this issue and don't dwell on it. They admit that this condition is usually progressive. They offer sort of a step ladder approach RE: the changes and damage. Change visible only by brain MRI, as in my wife's case, is considered minimal ( sort of like step 1 ) and then the visibility and damage / symptoms advance from there if progression occurs. They say wait for another brain MRI to reaccess but they can't agree on a 3 month or 6 month interval. Also, as you reported to this board, I was told that even localized brain radiation ( esp. in high dosage ) or boost radiation can be very destructive to the brain ( nerve & vascular ) far beyond the limited area irradiated. These unfortunate consequences are usually acute onset, not delayed onset. My wife's rad onc repeated himself again and again that WBR-induced white matter damage to some degree is unavoidable. It's the nature of the procedure. Outcome from individual to individual will differ as with any tx depending on several patient and technical variables. Chemo as a causative agent was mentioned as a contributor if not sole causative agent. I must say that you have clearly devoted much time and research to this subject as much of what you have written on this board seems to have been confirmed by these expert rad oncs and NS. Thanks much for the input on this subject. I do agree with the majority on this board that rad onc's need to be more candid about WBR adverse effects, in particular those classified as delayed onset, progressive and permanent.

Here's the verbatim commentary from my wife's brain MRI radiology report that was used as the basis for deciding to employ WBR in late May ' 04. The NS says that any patient with a comparable brain MRI need not second guess a decision to employ WBR. Use of WBR as a " preventative " measure or radiation associated with localized brain tumor(s) are entirely different matters that he wouldn't speculate about or compare. Most of you that have had WBR should have a corresponding brain MRI radiology report in your possession for comparison. I hope that this information helps some of you feel better or more at ease about your condition and your decision to go with or pass on WBR : " Findings : Multiple areas of abnormal enhancement are identified. Two areas are identified within the right cerebellum, largest measuring 2.0 cm. and the smallest measuring 0.9 cm., both ring enhancing in nature, seen on image # 19 of # 20 series. A third area, approximately 7.0 mm. is identified in the posterior left parietal lobe on images # 25, ring-enhancing, as well. There is also probable extra-axial abnormal region of enhancement, best seen on axial image # 19 and on coronal image # 20, broad in nature, aligned along the dural surface and perhaps with associated dural enhancement, and suggestion of loss of normal inner low signal of the inner table of the skull, very suspicious for bone metastatic process or extra-axial meningeal metastic disease with bone erosion. This measures approximately 4.0 cm. in diameter, approximately a centimeter in thickness. There is another lesion seen in the left frontal lobe, likely intra-axial, adjacent to the dural surface in the left frontal region, hyperintense on T1 but also with some enhancement suggesting possible hemorrhagic lesion. Smaller lesions are detected in the periventricular region without definite appreciable enhancement but are suspicious nature. This is seen on image # 13, FLAIR imaging, and on image # 18 of FLAIR imaging, as well, in the right frontal region. " P.S. I consider GDPAWEL the in-house expert on the subject of WBR and it's (in)appropriate use. I have personally invited him to post his opinion as to whether or not WBR was a reasonable tx choice given these findings.

My wife's WBR induced postradiation leukoencephalopathy has created a mentally diferrent version of the same person. We spent the last two days getting this sorted out with her NS and a neuropsychology expert. So far, some of her basic favorable traits that make her so sweet remain unchanged which is good. Her behavior is better when she gets out and is able to spend time with her friend, esp. with their dogs. ( Prior to dx my wife and her friend co-founded a local dog therapy program ). Most noticeable mental changes include significant deterioration in short-term memory. Longer term memory seems okay. As Kaffie mentioned, loss of ability to understand the value of a dollar is a good example of a basic lost ability. This is important to recognize because it is clear that my wife wouldn't been able to handle even basic personal finances in my absence w/o help. Her background is in bookkeeping and accounting and up until these latent WBR symptoms hit she was right on top of family finances. Now her financial capabilities are comparable to a young child. Another major change is that she is easily confused. Coordinating mutiple tasks is difficult for all of us. But, in her case, at present coordinating two simple tasks is too much. Confusion usually results in a child-like tantrum. This morning is the first time that she was confused by having to coordinate her weekly Saturday morning phone call from her family with a morning dog walk with a friend. This phone call / dog walk has been a weekly tradition and one of the highlights of her week. This confusion caused her to cancel the dog walk and take the phone call. Some personality changes that we have noticed can best be described as a general hardening in attitude about people, places, things and events.For instance, inappropriate laughter or indifference to situations that would have shocked and saddened her in the past. At this writing, there appears to be no further deterioration in her neuromuscular control. But, as previously posted, she no longer can safely walk w/o her cane. The contents of this post, as well as other posts that I have shared with you over the last 16 months, are sometimes difficult for me to share and certainly aren't posted to " scare " anybody. Just trying to share experiences from one case that may help another reader(s) facing a similar situation to better understand and cope.

Snowflake and Kaffie-I was going threw my fathers wbr file last nite. a huge file of information. I found one short abstract type article about postradiation brain injury for those interested in a brief summary of the disorder - REVIEWS Radiation injury of the brain PE Valk and WP Dillon Research Medicine and Radiation Biophysics Division, Lawrence Berkeley Laboratory, University of California, CA 94720. The clinical, radiologic, and pathologic findings in radiation injury of the brain are reviewed. Late radiation injury is the major, dose- limiting complication of brain irradiation and occurs in two forms, focal and diffuse, which differ significantly in clinical and radiologic features. Focal and diffuse injuries both include a wide spectrum of abnormalities, from subclinical changes detectable only by MR imaging to overt brain necrosis. Asymptomatic focal edema is commonly seen on CT and MR following focal or large-volume irradiation. Focal necrosis has the CT and MR characteristics of a mass lesion, with clinical evidence of focal neurologic abnormality and raised intracranial pressure. Microscopically, the lesion shows characteristic vascular changes and white matter pathology ranging from demyelination to coagulative necrosis. Diffuse radiation injury is characterized by periventricular decrease in attenuation of CT and increased signal on proton-density and T2-weighted MR images. Most patients are asymptomatic. When clinical manifestations occur, impairment of mental function is the most prominent feature. Pathologic findings in focal and diffuse radiation necrosis are similar. Necrotizing leukoencephalopathy is the form of diffuse white matter injury that follows chemotherapy, with or without irradiation. Vascular disease is less prominent and the latent period is shorter than in diffuse radiation injury; radiologic findings and clinical manifestations are similar. Late radiation injury of large arteries is an occasional cause of postradiation cerebral injury, and cerebral atrophy and mineralizing microangiopathy are common radiologic findings of uncertain clinical significance. Functional imaging by positron emission tomography can differentiate recurrent tumor from focal radiation necrosis with positive and negative predictive values for tumor of 80-90%. Positron emission tomography of the blood-brain barrier, glucose metabolism, and blood flow, together with MR imaging, have demonstrated some of the pathophsiology of late radiation necrosis. Focal glucose hypometabolism on positron emissin tomography in irradiated patients may have prognostic significance for subsequent development of clinically evident radiation necrosis.

Sundrop -so sorry to hear about your father. me the son is house sitting today and reading your posts. I can tell you this. the doctors that my mother and father have seen say that the white matter brain damage from wbr is permanent but they have no idea how much more it will progress or not in my mom's case. my parents have been told thsat the usual pattern is gradual worsening not improvement. my father found a small amount of medical literature about white matter remyelination but it was in MS patients and the literature gave no medical explanation why it ocasionally happens spontaneously without treatment. my moms memory is bad and she gets easyly confused and throws frustration like tantrums when confused. she also has some trouble with balance when she stands and walks

Snowflake - thanks for the message. I will pass it on. I'm covering the house today for my mother and fatherc who are at a doctor appt. she is fine. I see a difference in her mentally but she is still sharper than many people that I see daily. I think that my father was more upset than normal becasue as you know my mother is NED. so the brain damage sort of rained on the good cancer news. in fact a neurosurgeon at cyberknife discovered a mistake that brain MRI radiologists had been making for over a year, one of the lesions in her brain wasnt even a brain tumor. it was an undersized pineal gland. go figure. he said that it isnt that rare for this mistake to be made with this gland. the only comment that I can make about the casue of the brain damage is that its pretty hard to get away from the causative agents if the cancer treatment is the causative agents like radiation and chemo.. thats the trap. she saw her medical oncologist yesterday and he commented that he has never seen such a dramatic turnaround in a stage four lung cancer patient. shes is the last of the original Tuesdzay group clinic regulars. all of this improvement happened after she started Tarceva . 8 months of regular chemo and she almost died. 8 months on Tarceva and shes NED. wish the same for all of you. thanx again.