Bill
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Posts posted by Bill
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P.S. As I mentioned in another post, my wife's quality of life is very poor. I can't see much more of this going on if she doesn't get at least some modest short term improvement. Laying on the couch all day sleeping and only getting up ocassionally to snack or take meds ( including enough oxy and vico to kill a horse ) is the extent of her daily activities. She does try to take our dog outside for a short walk daily and a lady friend drops by ocassionally and joins in. She's just plain miserable and burned out and getting more difficult to live with. I think that she might give the first line of chemo a try but I have my doubts that she will take it much further if that fails. BTW, she would be returning to her Tues. chemo group. A nice, upbeat, group of friendly people. Problem is my wife is the only one left from that group and that certainly doesn't help her spirits. All new faces.
B
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none
Karen :
Good, honest answer. I hate to say it, but you are almost better off if you are busted ( with house, car exclusions, modest income and meager assets.)
B
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First, I want to thank all of you for the kind words and input re: my wife's situation. I haven't proven to be much good at doing likewise for most of you.
My wife has over 100 bone mets per her latest PET / CT. Her med onc says that, due to this, bringing in an interventional radiologist is a mute point and this is the bottom line. He can try to buy her some time as follows :
Tarceva / Gemzar / Navelbine / Zometa ( and pray for a synergistic effect ~ he tells me that so few patients live this long in this condition that he has seldom had to try this and doesn't know what to expect ) .... next, substitute in Alimta, next substitute some combination of Taxotere and maybe an Avastin combo ( note : FWIW, he is spooked by lung and brain bleeding reports with Avastin but he states that this is less likely with my wife's adenocarcinoma and most prevalent with squamous cell carcinoma. Anybody have any input on this ? ) Also, he said No ! to Taxol in her case. He offered no explanation so I didn't push it.
Here's his end of the line tx and it's brutal .... Samarium w/ multiple platelet & blood tranfusions.
It's my wife's life and I will respect her decision. She will let her med onc know next week whether or not she is willing to start this process.
Thanks again.
B
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Holly > It is a monster that everyone is fighting.
Holly et al.
Thanks for the kind words. Very little about this disease makes sense. An abundance of theories like no other disease. I'm not much into conspiracies and infomercials but the ability to produce cancer drugs that can do everything but deliver the knock out punch is wearing thin on me. Cancer cells are either the Einsteins of the cellular universe or cancer R&D is more interested in focusing on suppression and maintaining this disease as a chronic but controllable condition. Just one man's opinion.
I've seen enough, heard enough and read enough posts and bios on the LCSC boards to assure my wife that others have substantial lung and bone involvement and are still here to tell about it. Obviously, there are other drugs that can be tried to slow down this progression. I will leave that decision up to her. She has made it clear that she doesn't want to go thru another nosedive like the one that put her in ICU near death a year ago. Her biggest concern is losing her ability to walk and to be reasonably independent. Aside from some WBR-induced issues and two spine surgeries the cancer damage being done to her skeleton is scarring her. Esp. what's happening to the lower half of her spine and all aspects of the pelvis to her femurs. She needs a cancer drug(s) with a particular affinity for bone lesions. I don't see how further radiation can be of much help as the lesions are so numerous and she has already had portions of her spine radiated twice. We'll see what the med onc has to say on Tues. and her response. I'll let you know.
B
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I obtained my wife's latest PET / CT scan results this morning. She and I appreciate the ~ 8 to 9 months of dramatic improvement that Tarceva gave her. But, this latest 3/2/06 PET / CT rad report has confirmed my worst fears. Unbelievable. Excluding her brain ( which turns out isn't entirely tumor free ), based on her Oct. ' 05 PET / CT she was NED. Now, ~ 4 months later, her condition has completely deteriorated to include a massive re-invasion of nodules / lesions in both lungs, throughout her entire thoracic and lumbar spine, corresponding left side ribs, and entire pelvis with SUVs too numerous to list but ranging from 3.7 to 6.4. She's willing to speak with her med onc on Tuesday but her quality of life is so poor her opinion has been leaning towards hospice in anticipation of this dramatic deterioration.
B
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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.
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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
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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
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HI Folks,
Has anyone had a carboplatin/gemzan (gemcitabine) combo? Any feedback?
Z
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
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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.
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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
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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
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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).
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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
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Taxol?
in SCLC GROUP
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.
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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.
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Hi All,
My mother in law was very recently diagnosed (1-7-06) with stage 3b NSCLC. We are just beginning to grasp what the road ahead may be like for her, for all of us. Besides the cancer she is a very healthy woman who has never smoked a day in her life. In fact she was climbing Half Dome in Yosemite when she noticed for the first time that she felt more out of breath than usual for this hike. Passing this off as age and fatigue it was her hiking group that urged her to go to the doctor when a low level cough prevented her from walking at any incline whatsoever. She was diagnosed with stage 3B LC on account of a malignant pleural effusion (2 Qt) in her left lung, which, I am told is a fluid build up around her lung. After one bout of chemotherapy, (I don’t know the exact drugs) a PET scan revealed that the fluid has returned (1 1/4 Qt). I know each individual LC is different; however I was wondering if anyone has any similar personal stories they would share? What does the recurring fluid build up mean? Is this to be expected?
Thank you
K.
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
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... 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.
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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.
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I still don't have a good reason why they need the biopsy of the lung. Naturally they have the liver biopsy as this is the same place that the cyberknife of the liver was done. I still had the foresight to to remind them that they already have a biopsy. According to the nurse they won't do the cyberknife without the biopsy of the actual site. What do they think is in there, a peanut? Anyway, cyberknife calls the shots as they are a stand alone facility unaffiliated with any hospital. Jeffrey wants to do this so I booked it but will continue calling to get a sound reason..personally, I think it is something that has nothing to do with Jeffrey's cancer but more to do with statistics and marketing. In other words, in case he lives they can prove it actually was cancer and they had this role in his recovery..I'm a skeptic but usually not too far off the mark. I will keep you updated. Thanks for all of your suggestions.
Trish
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 ! )
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He was a firm believer that our government holds way too many deep, dark secrets and believed the key to a cure was one of them. He felt a cure for cancer would cripple our economy. True or false??? I hope he was wrong.
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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.
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It seems like everywhere I turn there is someone else the monster is after. What is going on here? Millions of dollars are spent on medicines and research yet instead of wiping out cancer it seems to be growing at an alarming rate. There has to be an answer somewhere and I can't help but think that somehow money is at the bottom of it.
LJ :
My training and experience is in mainstream medicine with only limited exposure to most of the specialty fields, unfortunately, oncology being one of them. IMO, of all of the specialty fields, oncology is the least understood. A mindboggling number of cause / effect and tx theories and discoveries that still don't add up to much more than a " crapshot at success " as one oncologist candidly put it. I stopped attending my wife's office visits with her med onc and rad onc as my propensity to ask relevant questions AND expect medically sensible replies has not only been a failure but has become detrimental to her visits. These oncologists have few if any solid answers to offer. It's usually an after the fact attempt at a make-it-fit explanation or more honestly alot of shoulder shrugging, I don't know, just lucky, prayer, miracle or some variation or combination of the above. IMO other than those individuals involved in R&D, teaching or some level of clinical study in oncology the average oncologist doesn't have much more than a basic understanding of dx and tx within the field. But, in fairness to them, and given the limited understanding of the disease, this is the normal and acceptable standard of medical care in most communities. Most of the rest of the medically team is lost on the subject. I do agree that advances in diagnostic techniques are probably largely responsible for the increase in incidence of cancer stats. RE: money, did you follow the recent story about the big pharmas sitting on an AIDS vaccine breakthrough because they are stalling and waiting for the government to do the official R&D for the vaccine $$$ ?
B
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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
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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.
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The pain in my abdomen from the new spread is giving me fits. I went to the pain management department yesterday and they put me on Methadone. 2.5mg twice a day. I started it last night and it didn't even touch the pain. I'm a difficult patient to treat because so many of the narcotic meds either don't work or they make me sick! I took my dose this morning and waited about 2 1/2 hours and then went ahead and took my old reliable Advil Liquigels. That at least took the edge off the pain.
Sometimes I wonder how we are expected to take all this torture.
My hope is that the chemo will at least reduce the fluid in my "belly" and help with the pain. The pain center said the next step would be to have a "nerve block". At this point, I'm willing to try anything.
TAnn
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.
Tragic ending near
in GENERAL
Posted
I'm Robert - Bill's son. excuse the poor explanation that follows but I dont have any medical background. it looks like my mother has just about reached the end. shes been in the hospital since yesterday morning. cant stop the fluid in the lungs. 2 large bottles of what the Dr called exudate sitting next to her bed whne I left. never heardd her scream so much as when the Dr kept jabbing her back with needles and drains. Dr says that her lungs are marblized with cancer. he mentioned a drain that can be surgically impplanted into the abdomen or something like that but say the surgery may not be worth it. shes on huge dose ofoxycodone and the ######## ! med oncologist only remarks are that he will procede with chemo if she wannts. no urgency in his mind and no plan to change drugs to more aggresive stuff.. to him shes just another patient going out the back door while a new 1 enters the front. at some point my father will give you a better up date but this is such a mess and so upsetting that I dont kno when. the pulmonoligist says that my mothers lungs could arrest at any time. he sees very little fiunctional tissue left and gives her a few days to a few week depending on chemo. my mother wants to be cremated with her ashes spread in the Pacific ocean like with neptune society. can anybody explain the useual process for arranging and doing this and ways to do it to keep costs down.?
Thank you very much