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Doctor giving up. . .help


hollyridge

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My husband has been fighting this disease now for 20 months. He remains fairly strong although he now has new mets to the brain. The radiation doc says it will respond well to radiation. Our onc told me a month ago (without even seeing him) that he would not make it to Christmas and I should call in Hospice. Well he made it through Christmas and he is making it through treatment and he is not experiencing any pain and he wants to forge on. We go to the movies and out for dinner and play cards with friends and entertain and shop and he plays guitar at church on Sundaysand plays with the grandkids. He is still a very viable man. We see the onc again on Friday but I am really discouraged by his attitude. As long as Bill was in remission and doing really well the onc loved seeing us. Now that the disease is progressing and we really need some intense help he is not interested. He just shakes his head. My husband is still fighting like crazy and we need someone to fight with us. The radiation doc is wonderful. He just keeps plugging along. We want to get into a clinical trial after his radiation but the onc says we are just "chasing our tails". Where do I go from here?

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I agree it's time for a change. Go to someone new and explain you're looking for someone that will fight along with you. My husband's prognosis in the beginning was quite poor. Our first oncologist would barely look at him, he directed all questions, etc. to me. I am sure if you did a study you'd find he had no trouble looking at people he thought he could cure. We were out of there and onto someone new pretty quick. There were four oncologists and we tried 2 before we settled on #3. Good luck and keep up the good fight.

Rochelle

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I am really nervous about switching. Everyone tells me he's the best. How do I go about switching? Almost all of the onc in this area are in practice together in this huge clinic. Our onc is supposed to be "the savior of all". He told us right from the start that my husband caused his cancer by smoking even though my husband had quit years earlier and I swear I know of some non-smokers with this disease. He says "not a chance." I should have followed my gut. I did not like him from the start but Bill did and so we went with him.

Bill has been on three different chemo regimens: Cisplatin/Camptosar, then Carboplatin/VP-16, and then Adriamyacin. The first two regimens gave us complete responses very quickly and then the minute he would declare a remission and stop the chemo it would grow back in a couple of weeks. He really only had one surface tumor for the first 8 months and then it spread to one lymph node in the right armpit and to small amounts on each Adrenal gland. Everything cleared up again within a couple of months of resuming chemo and then we stopped and it came back again. We begged for follow-up radiation but the onc said it was not necessary. Finally 14 months later he decided to get rid of the tumor once and for all and used radiation. The origianl tumor has never returned but now we have mets to the Adrenals, spine, one lymph node, and the "small lesions" in the brain. Against the onc's orders I convinced the radiation doc to radiate the spine and it worked, I then forced them to oder new tests and when the new mets came up we never went back to our onc we just went straight to the rad doc and he started treatment the same day. We need to find a chemo that will clear up the Adrenals. There is a drug designed for Bill's situation which is in phase two but is having some promise. I offered to pay for it out of pocket but the onc said it was worthless to try it. Maybe I shoud seek a second opinion with the onc who is conducting the trial. I am really weary of trying to keep up with this. We need help.

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Seeking a second opinion is a great idea. Without your medical team on your side, who do you have?

As far as the onc being the best around...perhaps he is, and perhaps he just has a terrible bedside manner. The "head-shaking" and negativity reflect his past experience and as doctors, they try to remain distant so as not to become persoannally involved. I hate that.

Talk to him if you want to keep him. Tell him that you think he is a good doctor and you are glad to have him medically, but that you guys need someone who will actively fight as long as you guys are willing to fight and encourage and offer hope...because without hope, what good is getting up and going to the doctor. Tell him that until he sees YOU guys giv up...that HE shouldn't be giving up. And close it by saying that if this is something he cannot do, if he cannot get on board your team as a positive ally, that maybe you should go somewhere else.

Most doctors just need to hear this from you.

In my dad's case, he was dx. last September and his first clinical research nurse told him he wouldn't "see" Christmas. PHOOEY. Daddy saw christmas, and eight more "viable" months after that. (Don't listen to anyone's timetables)

My dad's sclc was much more extensive than your husbands. He also didn't tell us about alot of symptoms he was having and bone mets went untreated for a long time and he developed mets throughout his skeletal system.

You guys have a chance- speak up and demand the care your husband deserves.

However way you deal with this doctor- keep him or let him go- a second opinion is always, always, a good idea.

My 2 cents!

Take care and please keep us posted.

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I agree with Katie-Tell your Dr that you want to fight this and let him know you want him to be the one to help. If he still acts like you are 'chasing your tail' then go to a large cancer clinic. If he is well enough to travel some, go. This is coming from a nurse-I have worked with LOTS of Dr and each one is different. Plus you may find he is eligable for some of the trials. Where there is life there is hope. Love Cindy

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My cents worth (not sure how many cents until I get to the bottom, could be two, could be fifty...)

There ARE people with lung cancer that never smoked. I'm one of them. I was 34 on diagnosis after a bout with pneumonia and a "fuzzy" x-ray. No symptoms, not warning, just a fluke with a virus and an x-ray...

If your oncologist works in an office full of 'em, see one of the partners. If there is too much of a conflict of interest, go to the next nearest group and get another opinion and INTERVIEW the doctors to pick the next one - for I believe you need another doctor, not one in the game for the "easy" cases. You both need to be confident in your choice of whose hands you leave hubby's life in - because that's exactly what you're doing.

(Looks like about ten cents worth...)

Take care,

Becky

aka Snowflake

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I can only echo what the others have said GET A NEW DOCTOR! Evidently he is not the best if he won't do what his patient wants. I am on my third doctor and this one is the best. The last one I had wanted to "wait", I asked wait for what, the cancer to grow back? The one I went to did not wait and started me on a new regime right away. Go for it

Bess B

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For what it's worth: Yea, it's sometimes hard to stand up to folks we've been taught are the "experts". And that's because they ARE experts. But being an "expert" doesn't make them infailable (sp?). It sounds like you've been doing this long enough now that you know what's out there and what you want. That being the case, tell your doctor. Tell him lound enough and long enough so that you're sure he hears you. If he still doesn't want to help treat your husband the way you feel he sould .... RUN do NOT walk to another doctor!

I had one doctor get on me a bit about causing my cancer by smoking. I actualy said this to him: "Yep, sure did. And now that we agree on THAT, what are we going to do about the cancer?"

Good luck on all this.

Dean

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Guest Jonathan

Hi, I have read all of your posts so far, and I do not think that you should stay with this oncologist. He is too negative and does not think out of the box. You said many things that struck me to come to this opinion. The first was his attitude, the second was that every time your husband had a remission, he just stopped chemo and denied even the idea of radiation after you said "you begged". Many oncologists give 3-4 extra cycles of chemotherapy when a patient with small cell goes into a remission because they know the risk of recurrence and the probability of microscopic spread especially in a patient with extensive disease. His attitude stinks no matter what his expertise and degrees. The other thing is that you said your husband is still feeling ok and strong. He is only 49, and for that reason alone he should be willing to at least try more therapy, but he is not willing. It sounds like, to me, that the both of you have made it quite clear that you want to proceed with more treatment, and he seems to be denying you that. This tells me that he no longer sees your case as recovering and it is time to move on. if you don't you may be very sorry. Why? Because even if he does decide to treat him further he may not do so in the aggressive manner your husband wants to proceed with, and therefore you are still being treated as if death is probable. He may give you a low dosage of chemotherapy for instance. You need to find an oncologist that understands that even though the odds may be stacked against you guys, you are willing and want to fight aggressively, and that is the patient's choice.

Now the next thing, and maybe the most important thing... chemotherapy. According to your post, you said he was on cisplatin/camptosar (CPT-11), then on carboplatin and vp-16 (etoposide). Then you siad he was given adriamycin. Right? Based on this I have some good news for you. There are other drugs that are used on sclc with success. They are as follows....

taxol (paclitaxol)

cytoxin with vincristine (sometimes they used adriamycin with this regimen)

gemzar

Also, lets not forget that it sounds like your husband may not be totally resistant to the cisplain/camptosar and carboplatin and vp-16 regimens. Why? becasue even though the disease progressed it was only after the chemotherapy was stopped. So he may still respond well to one of the two regimens. Explain this to the new oncologist, becasue he may want to proceed again with one of these two regimens...they work the best with sclc. In any event you may want to go for one of these drugs right now because they are proven and we know that they have shown effectiveness against sclc. He needs intervention NOW and probably cannot afford to wait for a trial. Also, he cannot afford to try a trial that may not be effective, especially when there are other proven drugs out there that most likely can help him.

My advice is to proceed quickly! Sounds to me like he needs to be back in the chemo chair pronto before things start failing him.

Just my opinion....I wish you the best. Please let me know what is happening, and how things are...if you have any questions you can contact me at.... te11t@aol.com or on here.

Sincerely,

Jonathan

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If you are not comfortable with what your doctor is telling you I certainly would find another doctor. Sometimes it is hard for doctors to realize that they cannot cure a person's disease. Dennis had an absolutely wonderful oncologist (rated in the country's best) and he was wonderful to us. He would always come in, take his time and talk very man-to-man with Dennis. This was while the news was good and tests were positive. Then, when things became bad, he hardly talked to us and kept his head down facing the floor. we could always tell immediately just what knid of news was coming...even before he spoke. But, you know what??? We did have the BEST doctor around and he did everything he could have possibly done for Dennis! I have no regrets!!! Sometimes, doctors have to tell us things we are not prepared to hear and it is very tough to live with. I admire the fight and drive you have! Keep that up.

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Holly and Bill,

Keep your chins up and keep fighting this da#* disease. You are young and otherwise healthy, you know your tumor was responsive to the chemo you already had, you didn't have the radiation follow up, nor did you have the exhaustive conservative chemo some doctors prefer.

Find a doctor who will fight with you, not write you off.

If he's too tired, he should retire.

Best of luck in your battle with this cursed beast.

XOXOX

MaryAnn

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Guest christiephilyaw

I agree with everyone else, get a new Dr. I worked in an Oncology office before and people would come to us all of the time seeking a second opinion. There is nothing wrong with that at all! You have to remember that we are only given one life and sometimes our lives don't mean too much to the "so called experts". Just because they are Dr.'s doesn't give them the right to call it "quits" and be so negative. With the horrible Dx of cancer, you need for your Dr to be on your side, not against you! As a matter of fact, one pt's wife called and wanted to see if our Dr.'s would see a pt if he had already been put on hospice. I told her, sure, bring him in.........it was her husband around the age of 60. Well, it turns out that his original Dr. pretty much wrote him off and sent him home to hospice. Our Dr. examined him and began the whole routine of scans, labs and a new treatment regimen. This pt is doing great, now! And you couldn't even tell that he was even sick when he first walked through the doors. Sounds a lot like what you are describing in your husband. He and his wife would have to drive for about an hour and a half to get to our office but, the wife said it was well worth it! So, I say.......go for it! God will see you through, I will be praying for you and your husband. I hope this helped! God Bless!

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