Adrian
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Posts posted by Adrian
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As long as he goes along for the treatment, let him be in all the denial he wants. Sounds like your treatment plan is well in order. Wonderful that surgery is a likely option after chemo.
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yes radio frequency ablation uses radio waves to heat up tumors and essentially burn them out from the inside. It's a local treatment---like radiation. If you have metastatic cancer, then RFA only makes sense if some particular tumor is causing pain or threatening to do damage (e.g. compromise the spine).
Avastin: As mentioned above, its not for people with squamous type. Its a recent non-chemo therapy which in the most simplistic terms, functions by blocking the formation of the blood vessels support tumor growth.
Others also mentioned Tarceva and have described it correctly. It has "third line approval' which means that its one of the few cancer therapies that the FDA has determined is a proven option to use after two prior lines of treatments have been tried and failed. For some people, Tarceva is the golden ticket and has given them profound tumor shrinkage and prolonged periods of progression free survival (e.g. periods of time where the cancer is not getting any worse). As noted by Randy, women, with adeno type cancer who are of Asian descent and have never smoked (i.e. less than 100 cigarettes in a lifetime) are the sub-group most likely to have the most dramatic results with Tarceva. But there are some non-smoking asian women who get no results from Tarceva and some people who don't fit under that classification who have benfitted quite a bit: including squamous type sufferers.
I'd alos like to point you over to www.onctalk.com where you can learn everything you could realistically want to know and interface with a set of doctorsd who can answer any questions you might have (spearheaded by the incredible Dr. West.)
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marinal and megace are the two usual meds used for appetite stimulation (as is decadron). You may want to revisit the possibility of decadron, only in a lower dosage, becuase it can give people a nice energy boost as well as increase appetite.
I would also re-emphasize the importance of keeping her hydrated as the chemo-0radiated patient is especially inc;lined towards dehydration, and its symptoms have very palpable and uncomfortable side effects that are sometimes mistakenly attributed to side-effects of the chemo and radiation themselves.
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Go SARCOIDS Go!
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awesome. keep up the good work!
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I posted while you were responding to Ned. I will respect your request to stop trying to convince you.
Adrian
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Ned maybe you're right, as you say: "something is telling him "no." And that something may not be simply fear. Perhaps he feels intuitively that FOR HIM, with his other respiratory problems, surgery is NOT the right choice. And, he may be right -- not statistically, not for most people, but for him."
Ned, what if you found out that for Mike, his fear was simply fear of surgery or anpother bad anesthesiologic experience, then what would you say?
And if it is concern that his respiratory problems would be compounded by surgery, aren't these concerns precisely the kind that you take up with an expert? My stomach tells me a lot of things, but it is not an MD, so it certainly does not get the final word in my medical decisions.
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by the way, the bronchitis may well be relieved or lessened by the surgery as the tumor may well be contributing to his cough.
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I totally accept that his reluctance has to do with his "extreme fear" due to the prior bad experience with surgery. This is a rational fear in the sense that there are risks of complications and frankly getting cut open is not too many people's idea of a good time. What I don;t accept is that this fear, however rational, should be the final consideration.
In fact, this is the precise type of fear that needs to be overcome by any and all means necessary. I will not mince words. If he does not have this surgery, in all likelihood he will die soon of lung cancer. Book a therapist, a hypnotist, anybody so that he can deal with his fear, but do not rest on it. I'm sure after his bad experience, he doesn't trust doctors, hospitals etc., but the reality is A. he had a bad experience with the anesthesiologist, but believe me, the (thoracic) surgeons and anesthesiolgists they use for lobectomy's are usually the best the hosptial has to offer and B. surgeons are usually very conservative when it comes to operating on lung cancers. If they thought it was too dangerous, they wouldn't be for it.
People have put their foot down before and said "absolutely NOT," but it turned out not to be the final word. With everything on the line, I do believe you should put everything you have into getting him to make the right decision.
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MM, No need to apologize to us.
Make sure he understands the reality of what the chemo response rates are in lung cancer (usually around 10%)---by that I mean, make sure he sits down with his oncologist who can dicuss it with him (and you together). Make sure he understands that surgery is a limited time offer. The unfortunate reality is that lung cancer spreads and oftentimes it does so quickly (to the bones, brain liver etc.). Once his lymph nodes light up, surgery will be off the table for good.
I understand the concept of loving and supporting unconditionally, but I also understand the concept of advocacy. They are NOT mutually exclusive.
Again I write with this fervor because of my own recent experience which culminated in the death 3 months ago of my 67 year old father. It makes me view your situation as if your husband is in a burning house. There are risks in using the fire escape, but you use it if you have it. Especially when you know that the fire extinguisher (i.e. chemo/rad) is not that powerful.
Best,
Adrian
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At the risk of sounding less than sensitive:
I suppose I understand the fear that one might have of surgery given a prior bad experience---But really, your husband has a rare opportunity to go for cure, which the vast majority of people diagnosed with lung cancer don't get (my dad didn't).
Go to the best surgeon you can find, get the best anesthesiologist out there---but don't let him throw away the best opportunity out there to get cancer out of his life, which is surgery.
Chemo/radiaition is no walk in the park and it is certainly no guarantee that it will fully rid him of the cancer.
As you stated, it ultimately is his decision to make, but your pivotal role here is to guide him towards the direction that makes sense. As you clearly understand, the stakes are extremely high, and in that sense it is the most important decision he has (probably) ever made. But given the probabilities, if not dying of cancer is his goal, there is a statistically right choice and wwrong choice. Get him the surgery, worst case scenario, you pushed him to the decision that was absolutely the recommended course of action.
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I wouldn't let it get to you. It was such a simple minded and forced "reflection" that you're better off letting it bounce right off of you.
If I were her mom, I'd be pissed. I raised a kid who believes she'll be over my loss in short order because "it's part of god's plan." I guess then we should also really be celebrating when a loved one gets cancer because it was all part of god's plan to begin with. . . so it has to be good.
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44 days is fast. I'm 28, tomorrow will be 10 weeks since my wonderful father died (67). We knew for six months.
I don't know how we go on, but we do. Sometimes (daily, actaully) the thought of what has happened to dad, his sudden sickness, his freefall decline, his death, his absence---it occurs to me and it takes my breath away. Shocks me as if it had just happened. Sometimes I see it coming and I turn away from it---a form of denial. And I know when I do that I'm pushing something down that someday I will have to address. Othertimes, I sob, other times cry just a bit. My mom and my sister and I talk about him everyday. I have dreams about him, as I did last night. I become used to the fact that this is part of the new, new normal.
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Welcome,
sorry you have to be here.
Certainly agree with the "bring a pen" advice.
If the lesion on the spine is cancerous, that would be stage IV. Sounds like your dad has not had a PET/CT or Bone scan yet. The bone scan (and a PET) will give the Doc a better idea if that lesion on the spine is in fact a met. If it is, unfortunately that would put the (assumed) lung cancer at stage 4. The spine met could be radiated if it causes discomfort, but the stage IV situation would not change.
It is also possible that the lesion is scarring or something else entriely, in which case based on the lack of cancer in the pleural fluid and the appraent lack of cancer spread, your dad could be staged lower.
Though we are hoping for a lower staging---hopefully one that permits surgery---if it turns out stage IV, all is not lost. There are many people who have been ticking on for quite a while despite stage IV.
Keep us posted
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Congrats on the emcouraging scans.
there is tons of accumulated knowledge about Tarceva on this board and www.onctalk.com
two things should be on your radar screen regarding its side effects: manageable diarrhea and a face and neck rash that can go from very mild to very bad.
Any competent onc. will be aware of this and will have the relevant creams and antibiotic ointments (the names of which esacpe me at the moment) ready for you once you start. Make sure you also have non-drying soaps and lotions.
Best,
Adrian
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Same caveat as above. Not a doctor, OncTalk is the way to go. This is what I take from the impression section:
"...further evaluation with a dedicated enhanced CT of the thorax may be helpful as well as close follow-up."
The CT scan will give them a better idea of what the mass looks like.
"A non-hypermetabolic metastatic focus is felt much less likely in this location."
These are nice words. It tells you that the reviewing radiologist does not think that the density represents a cancer spread from the oral cancer to the thorax (which would be a bad thing).
This would mean in the event that it was a lung cancer (which seems doubtful but not impossible), it would based on the otherwise clear PET, one limited to a single mass and may be otherwise removable and therefore curable (a great thing).
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Friends--
I apologize that it has taken so long for us to post again. We had almost 300 people at his funeral last Monday and then the week was filled with people coming by. Although I am Jewish, I have never been particularly moved by Jewish rituals. Through this experience though, I have come to see their value. In particular, the tradition of sitting "Shiva" for 7 days--where every night people come for a short evening service and to eat together--has been a wonderful thing for us. Now that people have stopped coming by--it feels like the hard part is starting and we are facing each day anew without my dad.
Adrian and I have wanted to share a little bit of detail about my dad's passing. It was like nothing we ever imagined---and others may find it helpful.
On Sunday night, my dad said that he felt like he didn't have much time left. I asked him if he had a sense of how much time he had--and he said he didn't know...and that he wasn't sure how he would know when it was time to go. I asked if he felt like he needed a "guide" through this experience---and he said that he did. I had no idea where I would find this type of "guide".
On Monday evening, after my dad was too weak to get out of bed for the second or third day in a row, our oncologist paid a house call to check on him. The onc thought we needed to have him admitted to the hospital for IV hydration and a transfusion. He was admitted Monday night and after he arrived it soon became clear that he wasn't leaving. His breathing had gotten quite bad in a short period of time.
On Tuesday, a social worker from the UCLA Cancer Center that I had worked with during this period came by to see us. I asked him if he knew of a guide that would help give my dad a "framework" for thinking about his death, and what to anticipate...he said that he thought he knew of someone that could help and he called this nurse ("Katherine") who is the co-chair of the hospital's ethics center and specializes in end of life issues.
On Friday evening, Katherine unexpectedly showed up at my dad's room. My dad had really begun to decline--his breathing was very labored, per our trusted onc's advice (+ a confirmatory x ray) we had decided to halt treatment, and we were very scared.
Katherine began by taking steps to make dad more comfortable---taking the blanket off his chest and stripping his gown to his waist. She checked his pain meds and after telling us that he was really on too light a pain control regimen (even though beyond bad chest aches when he coughed, he had little bone mets pain, thankfully). It appeared that she did not think that she had come to preside over my dad's passing.
She asked us about my dad. My mom, brother, and I told her that he was a professor of Sociology, that he was interested in altered states of consciousness, that he was not religious but he was spiritual, and that he had meditated in the '70s and still had true body awareness.
Katherine began by sitting by my dad and talking to him in a very soothing voice. The first thing she said was "Mel, look how hard you're working right now, you don't need to be working this hard. Just as the waves know when to come--your breath knows when to come." She continued with this relaxation exercise for a few minutes. His labored breath began to gradually slow. Katherine looked up and asked us whether we also thought that my dad's breathing had become somewhat less labored---as if it had "shifted gears."
Then, she began going down a path that I knew my dad wouldn't appreciate--explaining how he was going to see his loved ones on the other side. We stopped her and explained that what my dad WOULD appreciate was knowing that he was going to be part of the red rocks in Sedona, and the waves in Gabriola, and that he would always be part of us, and that he would be part of UCLA. Again my dad took a deep breath--and almost like downshifting a car--his breathing became less labored again.
Then, Katherine continued that train of thought--explaining to my dad that these were all natural processes--just like the sun rising and the moon knowing when to come. My dad took another deep breath, and his breathing downshifted again.
Then, my brother took over. In a similar tone, he began repating to my dad that it was time for him to go, we loved him, we would be okay and he would be okay, but that he had to go. It was almost like a chant or a meditation. My dad's breathing stopped being labored and he just began taking sporadic deep breaths. We started thanking him, all of us, mom included.
We suddenly realized that he was on the verge of death. My mom, moved over to the head of the bed and gave him the deepest kiss. It was his last breath. And then, my dad died.
Afterwards, we washed the body together and we each laid in bed with him by ourselves and told him how much we loved him.
Finally, we had a chaplain come and she improvised a secular prayer for my dad...which was so moving that she was crying when it ended.
And then we left.
There were over 300 people at the funeral last Monday. And while, today is the first day that we are really, really feeling the loss---his amazing death and his incredible funeral has helped carry us through this difficult week.
Just thought you all might appreciate our story.
All our best to all of you,
Leslie and Adrian
P.S. One of his graduate students constructed a webpage in his honor: www.melpollner.com
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All in all, not too bad Ernie. A little radiation and with a touch of luck you'll be back on your way to NED-ville in no time.
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Hello to you both. As you know, we are here for you and we will be glad to offer you the collective, accumulated knowledge that we have gained through this experience.
Also want to direct you to www.onctalk.com, an invaluable resource for everyone in our position.
Rainbow, were there other metastasis or was it just the primary lung tumor + the lymph node in the armpit? While certainly carbo/taxol/avastin is 100% the current norm for first line chemo in nsclc, I'd be interested in asking Dr. West from onctalk if you could be a candidate for surgery after chemo/radiation.
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Our father
in GRIEF
My sister and I will fill in later the truly incredible details of my father's final moments. What I will tell you now is this, we were all together and it was the most spiritual, satisfying and meaningful passing imaginable. It was simply beautful.
Thank you all.
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Hello everyone,
dad is still with us, but we've been told, and it is apparent, that we are in a "days" time frame. His breathing is declining by the day. He is slightly agitated, but not in considerable pain. We only hope that this happens as peacefully as possible. Thank you all for your continued support. Didn't think we'd be here so soon, but here we are.
Adrian
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SRS is easy and effective. It should do the trick on the brain lesion.
Though the chempo regimen is totally acceptable, I'm sort of interested to know why doctor is choosing carboplatin/taxotere doublet. Most frequently taxol not taxotere is the standard first line chemo. taxotere is more commonly used in the second line. I'm wondering if your onc thinks carbo/taxotere is more aggressive than carbo/taxol. And if he's trying to be more aggressive, why not cisplatin instead of carboplatin?
Also, you might ask him about adding Avastin which is a third medicine added in to your chemo regimen designed to choke off blood vessels that feed tumors. Typically assuming no progression, after the six rounds of chemo and avastin, avastin is continued alone until there is tumor progression. One of our members, Ned, after chemo+avastin was using Avastin only for many months (I think 11 months of avastin only) before swtiching meds. Avastin only, is cancer medicine's "easy street" in terms of side effects as well.
Some doctors are reluctant to prescribe avastin when there have been brain mets because of an increased risk of bleeding, but because of your solitary small nodule in the brain, many doctors would feel comfortable adding avastin in. The recent surgery might also be another reason that the doctor wouldnt prescribe avastin, but I would still ask.
Also, because you only have one nodule, you should be aware of the concept and overall positive implications of a precocious brain met.
http://onctalk.com/2007/04/08/solitary-brain-mets/
best,
Adrian
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yes, i know the feeling. six months ago, we were all at a cool restaurant for my mom's 64th birthday, and without a care in the world dad quietly sang to mom his own version of "when im 64." I sat there in awe of what a sweet and special thing to witness. One month later, out of the blue he's diagnosed stage IV. today he is in the hospital, treatments to be halted, hospice to begin.
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Friends--
I wanted to let you know where we are in our journey at the moment. On Monday, our oncologist stopped by our house (what an amazing guy!) because my dad was simply to weak to go to his appt. He said that my dad was significantly dehydrated and needed to be admitted to the hospital. After arranging for a private room for my dad and ambulance transport, we headed over.
Yesterday, after running tests, our doctor said that he believes that the Tarceva is not working. Since October 4th, my dad's CEA levels have gone from 400 to 800. While we know that CEA measures are pretty crude--that combined with all of his symptoms leads him to think that it is probably time to stop treatment.
My dad has said several times over the past few days that he feels so weak and doesn't think he can continue like this. The IV hydration isn't helping much. We are fortunate in that he is not in significant pain (although he says he feels an ache in his chest).
Our oncologist feels that my dad's cancer is incredibly aggressive. Given his amazing health prior to this illness, it is hard to believe that we could be going down this path after only six months. But my dad has fought hard--and I know that he loves us so much, that if it were at all possible to stay here, he would.
Yesterday, we sat together for five hours just holding hands. It is hard for him to talk. And while I am just so incredibly sad, it gave me tremendous peace just to be with him.
I am so sad, so terribly sad, and so shocked that we may lose him so quickly. My dad is one of the gentlest, kindest, and funniest souls to walk the earth. As everyone who meets him says, he is truly one of the most special humans you will ever encounter. While I feel that life is so unfair at the moment, I am reminded of how lucky I am to have my dad as my dad.
This community's strength and kindness has really been one of the few lifesavers we've had through this journey.
Many thanks,
Leslie (posting as Adrian because of a computer glitch)
Bevacizumab clinical trial
in NSCLC GROUP
Posted
My dad who at diagnosis had stage IV NSCLC w/ brain mets was in a phase II clinical trial for chemo+avastin, looking at the efficacy of chemo+avastin in NSCLC patients with treated brain mets. As Ned pointed out above, avastin has not yet been approved for NSCLC patients with brain mets. Because of the increased risk of bleeding and clotting issues with avastin, the thought is that brain bleeding as a result of untreated brain mets could result in aneurisms and the like. Even though its a clinical trial, in the last five years Avastin is one of the most imprtant cancer drugs to come to market and has a proven medical benefit in advanced NSCLC generally.
Unfortunately for my dad (and us), the cancer progressed pretty quickly despite this (and all other) treatment, but he didn't have any brain bleeding related issues that came out of his avastin use (besides one scary nose bleed event).
For first line treatmenet, avastin/chemo is the current state of the art. And because your mom has treated brain mets, chemo/avastin is beyond the current state of the art. It's the best you can do. Good luck, keep us posted.