Bill
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Posts posted by Bill
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my father is taking this very hard. worse than I expected. I saw something in ICU that Ive never seen before. my moms pulmionolist and pcp were talking with my father about the hopelessness of my moms situation and the pcp starting crying. not just a little. full out sobbing and he tried to made a fast exit and dropped his cell phone while trying to leave us in a hurry while stilll crying on his way out the exit doors... none of us has ever seen an M.D. cry over a patient likec this. my moms ICU nurse was crying but I have seem nurses cry a time or 2 before. I think that my mom was a very kind and likeeble person. every one aware of her passing today has cried at hearing the news, I think Im still in shock stage. may be my turn to really let lose crying will happen tonite. my father says that the house feel so empty
rob
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my mother ETSUKO CULKIN died this afternoon in the ICU at Saddleback Memorial Medical Center in Laguna Hills CA
thanx to all on this great board for the 2 plus years of support and helpful information that you provided to my father Bill. my father continued to fight for my moms life up to her very last breath today
rob
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JMO but I'd take it as it costs you nothing to consider it and it may save a life.
This is admittedly a very early and premature opinion but considering the terrible consequences if I'm right it can't wait. I'd much rather be able to report a retraction rather than a confirmation.
Over the past week ( post-Alimta tx ) my wife's lungs have progressively filled with " multifocal parenchymal opacities ". Finally, after several days w/o tx and increased opacities a pulmonologist started my wife on Solu-Medrol. Interesting to discover that according to the latest follow-up CXR report ( 24 hrs. after initiating steroid tx ) these opacities are suddenly stable. But, no improvement. IMO, this development suggests that the steroidal tx ( Solu-Medrol ) may be able to stop or at least slow the progression of suspected alveolitis but previous damage may be irreversible. This suggests that Peggy's explanation is correct that the alveolitis seen in her husband was destructive and ireversible. The earlier caught the less damage, maybe. Not sure as inflammation resistant to steroidal tx is a strange breed. Untreated it looks like the suspected alveolitis would simply continue to spread until it engulfs the entire lung field(s). IMO anyone that has received, is about to receive, or is planning to receive Alimta should be particularly alert for any unexplainable CXR opacities that appear after receiving Alimta or during tx with Alimta. If you experience extreme fatigue and SOB head straight to the hospital and demand, as part of your tx, steroid tx w/o delay. My wife is now left in a horrible situation. Massive lung opacities, very likely alveolitis as with Peggy's husband, that appears to be resistant to steroidal tx plus cancer progression in her lungs as she can't receive any chemo while in such grave condition. Unless the previously described opacities suddenly start to clear, her lung fields will gradually, literally be engulfed with this increased opacity plus tumors leading to a suffocation and respiratory arrest. I have agreed to a DNR order. The medical staff is in defensive mode but the pulmonologist did not dispute my suspicions and even went so far as to admit this morning that " Alimta may have played a role ". As Peggy would probably say, no absolute certainty that this is the scenario with Alimta as the culprit. But, if not, it's one helluva coincidence. In fairness to Alimta, I will report any change in my wife's condition that would seem to exonerates Alimta. Unlike some physicians that I've been dealing with, I'm not afraid to admit when I'm wrong.
Good luck and be careful.
Bill
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Rob,
I'm trying to find the biopsy report - so far no luck, but the CT results taken at the hospital which triggered the decision to do the lung biopsy. The CT was done on Aug. 2, 2005, the surgery was done on Aug. 4 and he died on Aug. 5. Also, you might see if your oncologist or pulmonologist would call Don's oncologist or pulmonologist. The oncologist is Dr. Robert Manges (317) 228-3393, and the pulmonologist is Dr. Robert Shapiro (317) 872-5591. I doubt they would take a call from you or your dad, but they probably would from another oncologist or pulmonologist.
Here's the CT report, and I'll keep looking for the biopsy report:
The lung fields demonstrate interval in severity of alveolitis. The current study demonostrates multifocal areas of alveolitis bilaterally several which are new from previous exam. The areas of involvement identified on the previous study having increased in severity. There is moderately severe atelectasis in the medial aspect of the left lower lobe stable from previous study.
Mediastinal structures demonstrate a mild pneumomediastinum with a small amount of air dissecting along the right aspect of the superior mediastinum. This is new from previous study. . . . .
Impression:
1. Increasing severity of alveolitis.
2. Small pneumomediastinum new from previous study.
3. Small pericardial effusion. This has decreased from prior study.
4. Small left pleural effusion which has decreased in size from previous study.
Again, his main symptom was SOB. He had no SOB at all for the entire two years until he took Alimta. The surgeon explained after the surgery that his lungs were very stiff (sound similar to what they are saying when they use the word "encased"). This "stiffness" was caused by the alveoli cells being destroyed and since the lungs could not expand, that's why he was having trouble breathing.
Ok. I'm going to keep looking for the biopsy report.
Rob, there wasn't a thing they could do to the reverse this, so even if that's what it is, I doubt very much there is a solution, but one of the two doctors above may have researched it further after Don's death, especially Dr. Manges.
Love you guys!
Peggy
peggy -
just a late nite short up date. no need for a search. I just spoke with my father and a family friend by phone. my moms condition is steadily declining. now we just wait for a miracle or that dreadded phone call
rob
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Bill,
I am so sorry you are going through all this. Alimta had a very bad effect on Mike. He developed pneumonitis, was put on high doses of prednisone and it's wasn't an overnight cure, but it did gradually help him. Your wife's case sounds much more complicated, but I keep bringing this experience up on these boards, because there seems to be a huge connection between Alimta and severe SOB and fatigue. You and your family continue to be in my prayers.
Sue
I wont report anything definjtive until I and my father hear it from a critical care pulmonologuist or some other treating dr / explanations coming out of cardiac icu arent jiving. my father says that some of this sounds more like spin and butt covering. pneumonitis was mentioned early then a completely diffrent cause is pushed by the oncologist. steroids and antibiotics for something like pneumonitis or pneumonia makes some sense but for tumors in lymph channels ? I dont know. still waiting to hear if any body has heard of this/
rob
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my moms medical oncologist spoke with my father. this is a second hand explanation to me and way over my head. - doctor says that lungs are sort of surrounded by lymph channels. in my moms case these channels have been invaded by tumors which is causing the lung or lungs to be encased and casue her brerathing problem. not sure how much of her lung or if it involves both or not. cant remember the term he used - something like lymphang - something. he says that the critical care pulmonologist is giving steriods and can try a couple of othewr things and improve this condition. dr states no more alimta or any chemo unl;ess the pulmonologist can correct this. then may be taxotere or a avastin combination to buy a little time. other wise, just a waiting game
TYVM
rob
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My son has provided a reasonably accurate account of events so I won't duplicate activities leading up to this morning. My wife is currently in the Cardiac Intensive Care unit. When I left it sounded like they were debating about intubating her. I laid out the Alimta toxicity argument lock, stock and barrel. All fallen on deaf ears. EXTREME fatigue, EXTREME SOB, EXTREME uncontrollable anxiety / episodic RAGE, mild delirium. Initial CXR is inconclusive but my son has updated me and states that a pocket of pneumonia or pneumonitis is possibility evident. This dramatic deterioration commenced ~ 36 hours after my wife received Alimta. Bottom line is that unless you are in a cancer facility / hospital that is knowledgeable about newer cancer drugs don't expect cooperation in pursuing the drug angle, IMO w/o successful intervention I can't see my wife living more than a few days. She seems to be suffering terribly. The above-mentioned anxiety /rage is particularly striking if you knew my wife. So out of character for her. Given the symptoms and progression, this is either a clear cut case of severe Alimta toxicity or one heck of a medical coincidence.
Thanks to all for the kind words of support.
Bill
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revolving door morality - one patient comes in the front door and another patient must exit the back door to make room . statistics rule in there world and if a patient out lives the stats whats there to cry about. this is the latest tune being played by more and more drs and nurses especialy about stage 4 ca patients like my mom .just the hint of threat by a dr to dump a terminally ill patient like my mom wanting treatment and barely clinging to life for any reason is an out rage thats deserving of the full wrath of my father. I think that hes ben to tough at times in his dealings with some people but in this case I say have at it full force if my mom gets abandoned and suffers over this
rob
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Dear Rob,
I am so hesitant to post this, and was before, too, because so many people are on Alimta and not having this kind of trouble.
My husband had a severe reaction to Alimta which caused his alveoli cells in his lungs to be completely destroyed. His symptoms were fatigue and gradual shortness of breath until breathing whenever he tried to move or do anything at all, even lifting a spoon to eat, became difficult. The symptoms increased dramatically after his third dose of Alimta, but the SOB began before that and was something he never had before Alimta.
/quote]
peggy -
my father is caught up in a very tense situation at the hospital tonite. I told him about the messages that have been exchnaged today. he sent me a text message asking me to ask you if you were able to produce any solid medical documentation- specigfic or unique symptoms - testing of any sort - abnormna;l lab values of any type - any medical proof - that confirms alimta toxicity in your case or is it more of a personal or medical opinion or suspicion at this time/ my moms oncologist insists to the point of dumping her that alimta is not the casue of my moms terrible deteriotration afterr recevinmg alimta/ this has put my father in a vetry difficult and outrageous position. bottom of the ninth and look at the position that my father is left in as far as my moms care. my mother is devastated over this blow up and ready to call it quits
pls help and reply ASAP
TYVM
rob
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Peggy - thanx for sharing oyur story. my father allready told me about your terrible ordeal.
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karen - yes I see poor quality way to much.some of the nurses are sharp but some of the others are clueless. ioo my mom has had a very very severe reaction to Alimta. some of the nurses still dont get it and I was surprised at how few nurses kno much about Alimta and its potential toxic effects/ mom is no better today. alimta was given monday afternoon. how many days does it take for semi coma fatigue from Alimta to improve. she cant even pull a tissue from a box or hold a straw in her mouth. everybody keeeps rtalking about dehydration. she is completely rehydrated but no improvement. youd think that that would be a big clue that somthing else is going on. still lots of breathing trouble and out of control bouts of coughing. none of this before alimta
Teresa - thanx much for the needle info. helps ease my concern over that mistake.
thanx to you all for the messages
rob
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hospital nurse inserted needle through a clear adhesive bandage patch that was covering my mothers PACath. A cancer nurse noticed the mistake and two people were called to her rooom. one of these people had a camera and took pix of the needle sticking threough the adhesive patch. nurse removed the patch and redid the needle and says that dont worry bore of needle is such that it does not cut a piece of adhesive out that could enter blood stream. then why are they watching my mom so close and keep testing her PACath and draw blood in and out ? people go out into hallway after testing and talk. how can things turn so bad so fast. my father has directive power and has ben asked to make a decisaion about ending all treatment but pain and comfort. a surgeon I think thoracic is planning to talk to my father tonite about something called a nerve block. also they are doing an ultrassound on my mothers abdomen and her feet and ankles are very swollen. she keeps coughing . cant stop. nurse says its probly the Alimta attacking lung tumors. nice of her to say so but hard to believe it with such a mess like this. they also fotgot to give her her folic acid yhis morning. they finally gave it to her tonite as I was leaving after my father showed up and went ballastic
rob
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My mom has ben in the hopsital 4 times this month. her at home drugs are scattered all over the dining room table - newest drugs datedd yesterday are -
2 boxes of FENTANYL transdermal system - 5 in each box - 50 mcg/hr - 1 patch every 3 days
morphine sulf 30mg tab SA - 1 every 8 hours
alprazolam 0.5 mg tab - 1 tab 4 times daily
temazepam 15mg capsule - 1 at bedtime
I know that her hospital drugs are a little different. same as the at home drugs but she getsc diladid either 2 or 4 mg ( sp) IV every 3 hours and mscontin 30mg morning and eve instead of morphine every 8 hours. I think that mscontin may be same or simlar as her at home morphine though. in the hospital she also gets Ritalin every 4 hours from morning to 4 pm
thanks for the replies and pain concerns. hope this is enough help her for now. mom has ben having hallucinations in the hospital. her memory is shot. doctors says its the patch causing amnesia. some one will visit her and she doesn't remember 5 min ;later. she also keeps saying that she sees a pair of hands over her head. hospital chaplain visits and says that hands over head vision is sort of common in terminal patients. this scares me. is this true. her doctor told me that she is so sick that she will die soon. the Alitma was given to try and buy her a little time but as I told you shes having lots of problems with it already
rob
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my mothers oncologist ordered salvage chemo monday p.m. 780 mg of Alimta. she weighs 120. ok response except for some skin itchin and rash then suddenly starting late last nite worst ever extreme fatigue shortness of breath and ach and pains. severe right flank pain to. pains seems to move around to different parts of her body. this morning her legs ache. she is so weak and short of breath that she cant stand up without holding onto something and cant walk. she can barely talk cuz she must gulp for air. dr says that this is fairly common for Alimta with extreme advanced disease that has been treated with chemo over nad over. this is why he considers it salvage chemo. no more salvage chemo unless her condition improves and scans show that tumor mass in her right lung has shrunk away from her aorta and spine and her vision improves/
special thanks to Peggy for all the messages of support. I sharedcthem with my mother and she says thanx
rob
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Hi Bill,
It's good to see you post. I hope you're doing ok. Did you remember to give that lovely wife of yours a hug from me? You can give your son one, too, and just tell him it's from one of the other women in your life.
Take care, Bill. I hope your wife is more comfortable these days.
Thanks for sharing the article!
Love,
Peggy
Peg :
Thanks for asking and yes I did. No encouraging news to report since last update. Taking it day by day. Another PET / CT scan tomorrow. My wife's med onc has a couple of other drugs ready to try but she's lukewarm on the idea unless this SOB issue can be resolved. Looks like fluid is trapped within the major fissure of her right lung. All lung tissue below that fissure seems to be choked off due to pressure. Appears solid white on CXR. Just walking out to the car triggers SOB. Also, if the PET / CT should show any new and unpleasant surprises all bets are off. Even her ( group of 3 ) pulmonologists are now discouraging further intervention. Also, she's too weak for general anesthesia.
B
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My other problem is what to do about it. I can't go on disability because even if they accepted me I can't go for months without income and the money is not enough to live on. I hate to keep dropping down job wise too because obviously my income keeps going down too. I know that you can work a little and still receive disability but I don't know how much??
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T :
Some companies offer S/T disability coverage to bridge the gap. Usually ~ 6 months at ~ 60% of gross pay. Double check your benefits. RE: disability generally, a cancer dx, even stage 4, doesn't guarantee disability status. In my wife's case, every doc treating her considers her 100% disabled due to her cancer but technically, based on disability categories available, she doesn't qualify unless she isn't receiving chemo tx and is in hospice. We haven't pushed the issue because coverage is okay as is up till now, but eventually we will have to push it. Probably not the cancer route, unless she's in hospice, but seek disability status based on her disabling spine surgeries. In other words, she gets her disability via the neurosurgeon, not her med onc. So, if you have any other health conditions secondary to cancer , or unrelated, pursue that, as well.
Good luck.
B
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Based on my experience, consensus medical opinion is that the original dx holds despite the popularity of PET scans and other imaging used to " restage " a patient's cancer. May be more meaningful to the patient to hear it than for the practitioners to revamp tx based on it. If you suffer through witnessing the periods of improvement, even dramatic improvement, only to see some or all of it reverse, it's easy to see why restaging is a tricky subject. Based on PET / CT scans, this past year my wife went from stage 4 NSCLC to essentially NED then back to stage 4. Stage 4 NSCLC was her original dx back in May '04.
B
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First, thanks to all for the post-chemo SOB post replies. The latest in my wife's heroic battle to survive another day is a CXR today with a rad report concluding that she has a reforming pleural effusion but it's " trapped " in the major fissure. Docs state that they can't safely drain it, at least until it reforms enough to spread out to accessible areas. This finding is consistent with her recent complaints that she can't deep breath. It sounds like the lung tissue below the major fissure is being choked off. On the CXR the ~ lower 1/2 of her right lung is snow white. This initially fooled the docs into thinking that it was all due to pleural effusion. Not so. She sees her med onc tomorrow morning. He will be presented with this dilemma. Pretty clear that her current chemo regimen isn't working and now this development. Anybody with the same or similar lung / trapped fluid development ? If so, what course of action, if any, was used to correct this problem ? My wife's quality of life is zero. She is being kept alive, but if this inability to deep breath is uncorrectable and worsens, it will be the last straw as far as she is concerned. She has developed a full-blown fear ( anticipatory anxiety ) of going into respiratory arrest AGAIN. It's been a long battle, since May 2004, and she's just about out of gas. An open ended ( prn ) narcotic order for high dose schedule 2 narcotics for pain & comfort has now been ordered which is a clear signal to her that palliative care has officially arrived.
B
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I vaguely recall this subject coming up in the past, but I don't remember what the majority response was. For those of you receiving chemotherapy , past and /or or present, did you experience any SOB following your treatment, either later that same day or the following day ? This would be SOB that, in your opinion, appeared to be directly related to the chemo tx.
Thanks.
B
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Aspirin reduces adverse effects of gefitinib.
Anti-Cancer Drugs. 17(4):423-427, April 2006.
Kanazawa, Shigenori a; Yamaguchi, Kazuyuki a; Kinoshita, Yoshimi b; Muramatsu, Mikiko a; Komiyama, Yutaka c; Nomura, Shosaku a
Abstract:
We measured serum levels of soluble (s) P-selectin and thromboxane B2 (TxB2) in patients with lung cancer treated with gefitinib, and investigated the effect of low-dose aspirin on some adverse effects of gefitinib. The serum levels of sP-selectin and TxB2 increased significantly in all patients who received gefitinib for 2 weeks. Forty patients were recruited, and 28 received gefitinib without low-dose aspirin (Group 1) and 12 were co-administered low-dose aspirin (Group 2). In Group 2, the frequency of adverse events, skin rash and diarrhea was evidently reduced by the low-dose aspirin therapy, despite having shown no remarkable change in gefitinib responsiveness between both groups. In one of the 12 patients in Group 2, aspirin therapy was suspended due to the occurrence of nasal bleeding. Four days after treatment suspension, she developed a skin lesion in her finger. However, the skin lesion improved after re-administration of aspirin without any other medications. After treatment, TxB2 significantly decreased, but not sP-selectin. These results suggest that one of the mechanisms causing gefitinib-related adverse effects depends on platelet activation. Administration of gefitinib with low-dose aspirin to lung cancer patients may prevent the development of gefitinib-related complications.
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B
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G :
Generally speaking, I don't disagree with much of your theoretical opinion about cancer tx. My point is that whether we're talking new or old, targeted-tx or traditional chemotherapy, the list of oral agents available for tx of lung cancer is next to nil. The list that you included in your last post clearly illustrates that. IMO, multi-tasking with targeted tx agents in various combinations with traditional chemotherapeutic agents will be the preferred approach in the tx of late stage lung cancer for the forseeable future.
B
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Giving low doses of several drugs every day by mouth...
The treatment includes small daily doses of standard chemotherapy drugs ...
G :
I don't understand how these standard chemotherapeutic agents would be formulated for oral use in lung cancer chemotherapy. Most of these agents are not available orally and are ineffective orally. Breast cancer has a better selection of oral meds. I am aware of attempts to formulate navelbine into a targeted-therapy drug but I have seen no follow-up on it's success or failure. And, I'm not sure what type of dosage form is being tested but I don't recall it being oral. IMO, the current popular tx modality for NSCLC is targeted-tx drugs such as Tarceva combined with lower dosage standard chemotherapeutic agents. Chemotherapeutic agents are then dropped and added into the mix over time depending on results.
B
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Tarceva is one of those things that benefits a very few patients a whole lot, is neutral in most, and is bad (e.g. strokes) in a few. An analysis prepared by the FDA staff questioned the benefits of Tarceva because it found that the pill caused a significant increase in toxicity, including a sixfold rise in strokes.
G :
Interesting. Could you please post the link ? The hemodynamic risk that you mention sounds very similar to that associated with Avastin. I was unaware that there is such a high risk of stroke associated with Tarceva.
Thanks.
B
father upset and guilt ridden over handling of ms drip
in GENERAL
Posted
make absolutely certain -
who is authorized to control ms drip rate and any decision to administer an iv ms push. you might be surprised unless you nail it down ahead of time
additional drugs may be neeeded to provide the not so guaranteed care and comfort promisedf with ms drip
if you want a 11th hour scan or test to completely satisfy your mind that all treatment efforts have been exhuasted get it done no matter what the doctors think
as with many things in life there is stuff that is over promoted as being smooth and easy and peaceful or what have you only to discover that it aint necesarily so. be ready to be one of the exceptions to the rule and act on it
peace be with my mom and others faced with this decision
rob