Fourth Line Chemo for SCLC Extensive - 1245292

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littlelady4220
Fourth Line Chemo for SCLC Extensive - 1245292

My husband might have to have fourth line chemo. First line was Carbo/Etoposide, six rounds (very effective), second line was Topotecan, five rounds (totally ineffective), third line CAV (has had three rounds)(we will know tomorrow with results of scan). He is having more bad days than good days, but still working.He was diagnosed 1/11.

My question is, what are the chances that fourth line chemo might be effective if the CAV is not? Not trying to borrow trouble, but I keep reading that if second line was not effective chances are third line won't be either. I just want to be prepared. His oncologist (who I loved in the begining, now having doubts) keeps referring to his new tumors as "bumps in the road".

Thank you for any guidance you can give me.

JimC
Reply To: Fourth Line Chemo for SCLC Extensive

Hi littlelady4220,

I hope you get good results from the scan and don't need to be concerned about fourth line treatment. In general it's accurate to say that if second line treatment isn't effective, then third line is less likely to provide a benefit. But these are percentages, and each individual patient is different. If percentages were absolute, each patient's survival would be identical, but of course they are not and patient outcomes differ dramatically. So we begin each new line of therapy with the thought that it will be effective.

My thoughts will be with both of you tomorrow.

JimC
Forum Moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

Hello Lady, I'm so sorry your husband is in this situation. Nobody around here needs to borrow trouble it seems too freely available sometimes. I'm sorry to say but what you've read about the effectiveness of further lines of treatment seems to be the norm. Below is a blog/post by one of our faculty on the subject. I'd have to agree that I'd not like to have this situation described as bumps in the road but it sounds like he is upbeat for a reason; ask why.

Though this is from a discussion about nsclc similar has been said about cases of sclc.
http://cancergrace.org/lung/2009/11/24/who-benefits-from-third-line-trea...

"...In other words, if the cancer grew through the best and second-best choices of therapy, trying even more was unlikely to help....
..."Does this mean that no one who progresses through 1st and 2nd line chemo should get more treatment? No, every case needs to be considered individually....
..."Even for those patients who have really resistant disease, I wouldn’t refuse treatment if they recognized the risks and still wanted to try. My job is not to talk people out of treatment, only to let them know what I think about risk versus benefit. Some patients really define themselves as fighters and are willing to try something even if the chance of benefit is tiny, and that’s OK. But at least they should go into it with their eyes open, and recognize that it is OK to stop treatment too when the odds favor making them worse rather than better."

This is a member who is on her 5th line of treatment for sclc and traveling. She is phenomenal and very possibly a real warrior princess. To know more about her travels and travails search her username; warriorprincess also note her history on the bottom of her posts.
http://cancergrace.org/topic/good-scan-results-1-2-way-5th-line

I know this doesn't give you a pat answer but I'm sure you know they don't exist in lung cancer.
Good luck with the scans,
Janine

warriorprincess
Reply To: Fourth Line Chemo for SCLC Extensive

why thanks, Janine...

I have to say that I seem to be able to tolerate treatment more than most..... I'm relatively young (45), never smoked (so my lungs are a bit healthier to start with), and fairly determined (ie pig headed!)

But my oncologist was definitely not encouraging about 3rd, 4th or 5th line. But I'm not really prepared to give up treatment while I feel so well, both on chemo and when I've finished it.

My oncologist was fairly clear that there are no options after this one, and if I get sick or deteriorate while on it, then it stops.

I didnt have a great response to 3rd or 4th line, but 5th line seems to be working quite well........ I am feeling it more this time though. much more tired and I've had to have a blood transfusion. But my bloodwork has improved on line 5, so thats good.

But I think the decision whether to persist is purely based on how well your husband feels. If he is well, and able to tolerate chemo, then I would push for it. If not, then better to focus on quality of life.

how long was the gap between the end of chemo and recurrence? I think this is also a key indicator of how well chemo worked.

Good luck with it all.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

Everything being said here is true, including warriorprincess's oncologist appropriately warning that the probability of benefit from a late line of therapy in SCLC is quite low...but her case illustrates that there is also a lot of variability in how individuals do and that there are exceptions to just about every rule.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

Well, just got back from the oncologist's office. The tumors are larger - the one in the liver slightly larger, one on the adrenal gland doubled in size. Don't know about any of the other tumors since it was a CAT, not a PET Scan. So it appears that this third line was as ineffective as the second line. Now my husband will start fourth line next week, Carboplatin/Taxol. Don't know anything about this combo but will look it up later.

I don't know what to think or feel. Should I be upset because the tumors are bigger, or optimistic because there is another chemo drug to use? This doctor has given my husband the impression he is going to live forever and although I know he is giving him hope, guess I'm just a realist and am the type of person to just face facts and deal with them.

Has anyone been on Carbo/Taxol? What can you tell me about it?

Again, I thank everyone for taking the time to respond to my posts. You answers are greatly appreciated.

certain spring
Reply To: Fourth Line Chemo for SCLC Extensive

Actually warriorprincess is on that combination now - it's the current regime she refers to in her post, so she can give you a first-hand account.
We had a GRACE member recently whose mother did well on carbo/taxol:
http://cancergrace.org/lung/topic/3rd-line-sclc-update-taxol-good-news/
He mentions neuropathy (nerve pain) in her feet as a side effect. And carboplatin can be pretty tiring.
Amazing that your husband is still working. Kudos to him. And it's normal to feel bewildered - cancer is totally bewildering. You just have to keep getting up in the morning. Best wishes to you both.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

littlelady4220,

Just to be fair, since you're asking a direct question about how to frame your expectations, I think it's appropriate to acknowledge that the odds of a response and clinical benefit from fourth line therapy are not high. the fact that warriorprincess has demonstrated a response and continues to do so well illustrates that these are not absolute rules, and there should still be room for hope, but I fear that it is misleading to paint an overly optimistic picture when that it a fair hope but not a realistic expectation.

I hope you add another report that gives us more reason to redefine what is possible.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

Thank you all for your responses. And thank you Dr. West for your candor. My husband's oncologist told him yesterday that if this fourth line doesn't work, not to worry because there are two or three more chemo drugs out there to try and that 4, 5 and 6 lines of chemo for this type of cancer is not unusual. I just stared at him, wondering if he was just trying to give my husband hope or if he was just out and out lying. I'm also a bit concerned because this doctor has done 5 PET scans in 1 1/2 years and wants to continue to do them. I had asked this board about these PET scans some months ago and everyone said that CAT scans were sufficient.

My husband appears to be having more bad days than good ones, even though he is still working four full days a week. But he is very tired, has diarhhea alot - which the oncologist says is not chemo or cancer related - and in general just doesn't look or feel good. I got him to finally consider taking a leave of absence or apply for disability.

Again, thanks to everyone for answering me. I will continue to post as we progress with this.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

Oncologists are often very optimistic -- it helps keep us going when it would otherwise be very easy to get down -- and some people border on extremely so. I certainly know some oncologists who are so optimistic that I think it's hard on their patients to not have a realistic assessment of their situation. On the other hand, some patients and family members absolutely thrive on having someone who is unfailingly positive.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

warriorprincess
Reply To: Fourth Line Chemo for SCLC Extensive

boy, that does sound unrealistic, even by my standards!! :)
My oncologist has told me there are no other options after this one...... so clearly they are chalk and cheese. Do you think we could have someone in between!!? I guess that would be Dr West. :)

My oncologist has specifically said there are no other options after this one. I've done carbo/etop 2x, so thats only 4 different chemos that they were willing to try. When I first started treatment, she said there were 3 chemo options. So, I got one more than she said originally. I dont know if she has any others 'up her sleeve". but my experience in the 2 years I've been battling this curse is that no-one else with ext-sclc on any of the forums I've been on has made it to 5 rounds, apart from me. I feel like I'm on quite an experimental road.

How does your husband feel with the oncologist? If he is also unhappy, then maybe worth getting a second opinion.But maybe he finds it helpful to be optimistic.... in which case I guess you just need to be prepared for a potential crash in the future.

I've never had a PET scan, only CT scans, (and bone scans, MRI and xrays for the bone mets). I'm not really sure what the benefit of a PET scan would be, but I dont feel like I've missed anything from a functional point of view.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

There are plenty of oncologists who order lots of PET scans, so it's not as if the idea is WAY out there. It's just that in most cases of lung cancer, and the vast majority of SCLC especially, we get a clear sense of whether the treatment is working or not from a CT. Moreover, I think the extra information that a PET offers is often information that leads to questionable or frankly bad decisions because it makes us think that very minimal changes are clinically significant.

Thanks for the vote of confidence in balancing optimism and realism. But different people want different things, and I don't think anyone is the perfect fit doctor for every patient. I've had a few who are looking for more of a cheerleader who is willing to just tell them what they want to hear.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

warriorprincess
Reply To: Fourth Line Chemo for SCLC Extensive

i think its a huge challenge, cause even what we want changes over time :)

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

Well, just got back from the oncologist's office. Fourth line of chemo didn't work - he is starting fifth line of chemo (Cisplatin/Irinotecan)- please forgive the spelling - two weeks from today. Doctor says that maybe it might control the tumors. Since I last wrote, about 6-7 weeks ago, the tumor on his liver grew about 1 inch, a tumor on one of his adrenal glands grew by 30%. Doctor still doesn't seem concerned and I don't understand why. I'm concerned, my husband is concerned.

Does anyone have any experience with these two chemo drugs? My husband is already deaf in one ear, has 15% in the other. Wears a hearing aid. I'm afraid he will go completely deaf with these treatments.

Warrior Princess, you have been on my mind alot. How are you doing?

christineleeds
Reply To: Fourth Line Chemo for SCLC Extensive

Dear Litlelady
Cisplastin is quite likely to cause deafness my Philip was quite deaf afterwards and he was normal before.He had no other symptoms from chemo.The fourth line suggested can be quite a challenging combo.It is hard to get your timeline as there is no profile but your husband seems to have had a lot of chemo in a short time.It may be a good time for a second opinion if you are doubtful.
God bless
Christine

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

Hello Lady, Oh dear I'm so sorry about the progression he is experiencing. I will ask for input from one of our doctors.

I too have been thinking about our Warrior Princess lately.

JimC
Reply To: Fourth Line Chemo for SCLC Extensive

littlelady4220,

Your concern about the possibility of your husband going deaf is well founded. As Dr. Weiss has said:

"In general, I do not give cisplatin to patients with severe hearing loss, because there is a very real risk of deafness. For both head/neck and lung cancer patients who either complain of severe hearing loss or who have an audiogram showing significant hearing loss, I typically advise the use of carboplatin instead. I did have one patient who said that he cared very little about going deaf compared to any small potential benefit of cisplatin over carbo. Respecting this, I agreed to give him cisplatin and he did not go deaf." - http://cancergrace.org/forums/index.php?topic=9188.msg71894#msg71894

He also wrote this about preventive steps for managing cisplatin side effects:

"Here are the preventatives that I believe in with cisplatin:

Renal prophylaxis- IV fluid before and after chemotherapy. Mannitol with chemotherapy. IV fluids days 2 and 5 for patients with pre-existing kidney problems, trouble keeping up with fluids during chemo or creatinine bump during chemo.

Electrolytes- Magnesium. Regular monitoring of other electrolytes, especially potassium. Prophylactic potassium reasonable as long as potassium is not elevated to start.

Nausea prophylaxis- Steroids and 5HT-3 antagnosist (ideally aloxi, if not zofran) with chemo. Emend if possible. Steroid taper following chemotherapy for patients who still have trouble with nausea in the few days after chemo or severe fatigue believed to be due to abrupt withdrawel of higher doses of steroids.

Hearing prophylaxis- The question, "How's your hearing?" Audiogram pre-chemo if answer is anything other than, "normal," or "great." - http://cancergrace.org/forums/index.php?topic=7718.msg56834#msg56834

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

I'm very sorry to hear about his recent progression. I can't explain why his oncologist isn't acknowledging that further progression is an unwelcome development, though I imagine it's because the progression sounds pretty mild overall. Some oncologists just always want to portray a front that there's always a next treatment out there that is a fine idea.

There is a real risk that cisplatin could cause more hearing loss or even deafness. I suppose the question is what real alternatives there are and if not doing more treatment is an acceptable option.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

Hi Christine, I hope you are ok.

Lady, Christine is right. It is difficult for our doctors to keep up with all of us and also difficult to bring in another doctor for input (one who specializes in sclc) when there is no signature.
If you would, click on your user name (littlelady4220) on the left of your posts. That will take you to your "forum profile".
go to edit "signature" and type a brief history of your husband's case (see others' sigs). Then click submit.

All the best to you 2,
Janine

Dr Gadgeel
Reply To: Fourth Line Chemo for SCLC Extensive

I am privileged to be one of the faculty on this excellent website. I am not sure I can add a whole lot to what Dr. West has already mentioned.

One can debate the issue of 5th line chemotherapy. But I dont think I would consider 2 drug combination at this point. It is only going to increase toxicity in this situation without adding much in terms of benefit.

Also if he is in a reasonably good shape and wanting to try more treatment one option is to consider is a phase I clinical trial. I would view that as a better option than trying more chemotherapy.

irrigationgirl
Reply To: Fourth Line Chemo for SCLC Extensive

I notice this post on my FB wall...and I haven't been here in over a year.
But I felt compelled to offer my story and support after seeing the posts and reading them.
Dr. West is right you must weigh the good and bad of additional treatment. It is a painful process.
I will admit that after reading and researching the response rate based on my G's situation, I did not want him to do more chemo. I didn't want him sick in his last days. But he was a fighter, and my G did a 2nd line of Chemo and after 3 weeks of treatment, 2 blood transfusions, multiple doctors visits and 2 ER visits, he requested a scan. He was not responding well to the treatment with Topetecan and he was very ill.
After an ER visit and CT, we were told he could continue but the likelihood of this treatment working for him was frankly, unlikely as the mets in his liver had progressed very rapidly during treatment.
Our oncologist while always positive was also very forthcoming and he knew I was following up with research, questions throughout the whole process.
I asked many questions here as well throughout the year G was battling LC.
It was very difficult to hear his doctor say "this is your decision."
G made a very brave decision to LIVE..to LIVE life to it's fullest in his last weeks.
Once his pain was managed with methadone, he had several very good days before he passed.
All I can offer is my story but it is mine and mine alone. EVERY situation is different. PLEASE do not be discouraged as throughout my time here on CancerGrace and other places, I have seen many different outcomes.
Additional treatment or not, you have to make the right choice for your situation. Neither is wrong but make sure you know the good and bad of those choices and you are working on gathering that information by just being here. I respect my G's decision to cease treatment to "live" because I know it took as much courage to make that decision as it did to fight LC for a year. Much love <3 IG

certain spring
Reply To: Fourth Line Chemo for SCLC Extensive

What a nice post - thank you Irrigation Girl. Little Lady, I am sorry you are having to deal with this.
I wanted to join Janine in saying a warm hallo to Christine in Leeds.
I too miss warriorprincess and wonder how she is doing.

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

An update and a question. Husband just finished first round of cisplatin/iritonecan (sp?). No real side effects. His hair is growing like crazy, very fast. And his white cell count, which on the four previous lines of chemo he had to have injections because the levels fell so low, are now climbing without the injections. Is this normal for this kind of chemo, has anyone had this non-reaction before? What does it mean if things are opposite of what to expect?

And Im concerned about Warrior Princess, haven't seen anything lately from her. Does anyone know if she is okay?

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

Thanks for the update. It sounds like your husband is handling the treatment really well. From everything I've ever heard about lung cancer treatment is that if one is doing better than expected then your ahead of the game. A full head of hair and good blood levels are in no way a signal that something is wrong. Congrats.

I haven't heard from Warrior Princess in a while and have also worried about her.

Anyone know?

Janine

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

Different chemo agents have different side effect profiles, so an absence of hair loss isn't a negative sign. You wouldn't expect it with that regimen. Also, his higher WBC is probably good because of the combination of growth factor injections and this chemo regimen not necessarily being that bad on the blood counts (depends on the doses and schedule of what is given when).

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

Well, they couldn't do the second round of chemo this week because his platelet counts were too low. But what I'm worried about now (what else is new) is that he is in so much pain. It travels from his back to his left side, then his right side and then to his back again. He asked the doctor if this is a side effect of the chemo, or could it be the tumor on his adrenal gland - the doctor says he didn't know and gave him a prescription for 200 Lortab! I was stunned. My husband is going on the assumption that if he prescribed that many pain killers, that he should be expecting alot of pain. But what bothers me is that we don't know what is causing the pain. Doctor won't do a scan until after the second round, but at this point it is over a month away.

I know that no one on this board can tell me what is going on. Just wanted to vent. And to also thank everyone for responding to my posts.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

It's not rare to need to delay chemo because of low counts. I'm sorry about the pain. If he's needing to use more than about 6-8 tablets of the short-acting pain medication, it may be worth asking about getting a longer-acting medication, sustained release pain medication like MS Contin or Oxycontin, or else a fentanyl patch (Duragesic) to absorb a steady amount of pain medication through the skin.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

I don't know what to do anymore, and I don't know if anyone here can help me. Dr. West, you have been fantastic and I appreciate your comments. Can't wait to see what you might say about this.

My husband had one round of his fifth line of chemo on October 3, and hasn't been able to have any since because his platelets went to 47 and his hemoglobin is now at 8.3, going down every week even though the oncologist has upped the dosage of Procrit. Obviously it just isn't working. My husband had an ultrasound last week, and the tumor on his adrenal gland doubled in size again. Liver tumor is about the same as before. This Friday he will have a CAT Scan, which I think should have been done anyway instead of the ultrasound. Doctor says he will probably start a sixth line of chemo, I don't know which meds, but he can't do anything until his hemoglobin and platelets go back up. Can't say when that will happen.

In the meantime, he can barely walk 10 feet without stopping to catch his breath. He is in horrible pain on his left side and back, doctor says it is not the tumor but he doesn't know what it is, so instead of trying to find out, he gives my husband a prescription for morphine sulphate and oxycontin, to be taken at the same time. My husband tried it last weekend and said no more, he felt horrible and it didn't really take care of the pain anyway.

I truly feel that my husband is slowly slipping away, he gets weaker every day, and in the meantime the oncologist says don't worry, it's not so bad and you are not near the end of your life.

The only place I'm getting honesty is from this board. I appreciate it more than I can tell you. Please, please give me any feedback or opinions you may have.

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

I'm so sorry to hear things arent getting any better for your husband and that communication isn't good. It seems there should be a better symptom management plan in place.

I will contact a doctor to comment on your post.

I hope tomorrow is a better day.
Janine

dr. weiss
Reply To: Fourth Line Chemo for SCLC Extensive

Pain specialists can sometimes be very helpful. A good pain specialist reviews the available data and addresses what can be done to improve pain. Adjustments of both choice of pain meds and dosages can be very helpful for many patients, but the best pain specialists also consider a variety of other tools, depending on the causes and nature of the pain.

Some patients are able to get many lines of chemotherapy over a long time. But, soemtimes there is cumulative toxicity to chemotherapy. In particular, the bone marrow, where blood cells are made can get "beat up" over time. It can be very frustrating when something like this prevents additional chemotherapy in a motivated patient. It's awful to watch a person decline from advancing cancer because something, such as this, is interfering with the ability to use chemo when chemo has worked well before. Blood transfusions can be very helpful for anemia (the red count) but when platelets go very low, there isn't always a solution.

Second opinions can be very valuable. If there is something more or different that can/should be done, they can improve care. When the curren care truly is optimal, the second opinion can at least provide reassurance that you've done everything.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

I'm sorry to hear how hard it's been. It does sound like you may well be right that the value of additional treatment is somewhat between negligible and non-existent. Most patients will have exhausted the benefit of more treatment after five prior lines of therapy for lung cancer, and this is especially true if the immediate prior chemo caused significant side effects but the cancer grew right through it. Moreover, additional treatment tends to provide little or no benefit in patients who are very weak already -- in fact, harsh treatments may well shorten rather than prolong survival in patients too fragile for more.

A second opinion could potentially provide a fresh set of eyes to assess his situation. It sounds like the oncologist there may be so optimistic that his view isn't well grounded in reality, but I'm not actually seeing your husband directly, so I'm only able to go by what you're relaying.

I would caution that it could be a mistake to dismiss pain medication. Just because the dose wasn't right doesn't mean a better regimen can't be identified, and it could be a real help for him. As Dr. Weiss suggested, perhaps even seeing a pain specialist would be helpful to find the right balance of effective pain control while minimizing side effects.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

I'm sorry to hear how hard it's been. It does sound like you may well be right that the value of additional treatment is somewhat between negligible and non-existent. Most patients will have exhausted the benefit of more treatment after five prior lines of therapy for lung cancer, and this is especially true if the immediate prior chemo caused significant side effects but the cancer grew right through it. Moreover, additional treatment tends to provide little or no benefit in patients who are very weak already -- in fact, harsh treatments may well shorten rather than prolong survival in patients too fragile for more.

A second opinion could potentially provide a fresh set of eyes to assess his situation. It sounds like the oncologist there may be so optimistic that his view isn't well grounded in reality, but I'm not actually seeing your husband directly, so I'm only able to go by what you're relaying.

I would caution that it could be a mistake to dismiss pain medication. Just because the dose wasn't right doesn't mean a better regimen can't be identified, and it could be a real help for him. As Dr. Weiss suggested, perhaps even seeing a pain specialist would be helpful to find the right balance of effective pain control while minimizing side effects.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

An update - everyone here has been helpful, thought I would let you know what is going on. My husband's tumors grew again, one on each adrenal gland, one on his liver. Fifth line chemo did not work. He is starting sixth line chemo, Temodar Capsules, 140mg, tomorrow. He is also on morphine sulphate and oxycodone for pain. Also, he has developed four small brain mets. So he is going to see a radiation oncologist next week, and they will start whole brain radiation. Every day for two weeks, we are told. He is not allowed to drive. He does not believe he will have any side effects, yells if I tell him differently. Can someone please tell me what to expect from this kind of radiation.

And, again, his oncologist is telling him that this is another bump in the road. My husband believes that he is going to overcome all of this and live for several more years. He is on disability, but believes that he will be going back to work full time, driving his car as soon as the radiation is done.

Any suggestions on how to handle this? I know that the end is coming, my husband does not, so he refuses to put his affairs in order. I am a realist, so if I sound cold, please forgive me. I just need a little advice on what I should be doing. I spoke to his oncologist privately, by the way, and he tells me that it will be quite awhile before anything happens.Don't understand why he says that with everything that is happening.

Thank you all.

certain spring
Reply To: Fourth Line Chemo for SCLC Extensive

I don't think you sound cold. It's a very difficult situation for you. I wonder, does your husband perhaps know deep down what is going to happen? Would it be characteristic of him (you know him best) not to discuss something bad that is coming down the line? My mother never acknowledged that she was terminally ill, even when it was obvious to everyone around her.
You asked about WBR. The most obvious side-effects are a) losing one's hair; b) heavy-duty fatigue that kicks in some time after the treatment and goes on for several months, or so I found. We have lots of helpful briefings about it on GRACE.
I confess I find the oncologist's attitude peculiar and verging on the irresponsible. However some doctors only respond to a direct question, and perhaps your husband has not posed such a question. This leaves you in a difficult position - it must be lonely as well as frustrating.
As to getting his affairs in order, I suggest being very practical and saying that you both need to do it, so he doesn't feel that he's the one making his last will and testament alone. Very best.

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

Thank you, Certain Spring. As always, you make a great deal of sense. My husband did ask the doctor, about two weeks ago, right after we got the results showing brain mets, if it was time to put his affairs in order. The doctor said no, not at all. This led my husband to believe he has years ahead of him and that he will beat this monstrous disease. My husband is generally a realist also, he's a bright man has had a rough life and has always managed to push his way through and has been successful in that. But in this situation, he can't see the truth. I don't know how much time he may have left and the doctor won't even touch the subject. Anyway, Certain Spring, thank you again.

cards7up
Reply To: Fourth Line Chemo for SCLC Extensive

I've been reading your posts and also can't believe the irresponsibility of his onc. I do know that Temodar is for treating brain mets and has nothing to do with the lung cancer. How old is your husband? I see he's now on disability and maybe having time to rest will help some. Keeping you both in my thoughts and prayers. Take care, Judy

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

He turned 60 at the beginning of this year. This coming January, it will be two years since his diagnosis. It's strange - his oncologist has a fine reputation here and has tons of patients. Everyone loves him. I like him, he's a nice person, takes all the time to talk to you. I just don't feel that he is as forthcoming as he should be at this stage of my husband's illness. And I also feel he is doing my husband a disservice by not being more realistic.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

I think you are very appropriate and entirely correct that it's doing you and your husband a disservice to just whitewash over the reality of what is realistic to expect. I think if you can speak to the oncologist, it could be helpful to express your concern, and perhaps that will trigger a change and a more realistic discussion from him. He can't seriously question the accuracy of your expectations, as he's the one who's being inappropriately optimistic here.

The only other thing I'd say is that you can't use the fact that a doctor is popular with patients as a refutation that they are overly optimistic. We've consistently seen that the doctors who are unfailingly optimistic, even when it flies in the face of all evidence, are often the most popular. "Give the people what they want" is a concept that works, at least in the short run.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

certain spring
Reply To: Fourth Line Chemo for SCLC Extensive

I think it's awful that you should be put in a false position in relation to your own husband. I hope the doctor can be persuaded to be more direct, as Dr West suggests. In my own marriage, it has helped me enormously to know that my husband and I hear the same information and have similar expectations. I cannot imagine knowing things that he did not know, or vice versa. It seems most unfair on you, and stressful. Do you have any friends with a medical background who could help you with the task of readjusting your husband's expectations, so that the news - when it comes - will not be too much of a shock? Your husband obviously does have his suspicions, or he would not have asked the oncologist so directly about sorting out his affairs.

littlelady4220
Reply To: Fourth Line Chemo for SCLC Extensive

I would like to thank everyone on this board who so patiently answered my questions for the past couple of years.

My husband passed away December 28. He fought a valiant battle, but this hideous disease won in the end.

Thank you all.

catdander
Reply To: Fourth Line Chemo for SCLC Extensive

I'm so sorry, please accept my condolences. These words seem so inadequate for conveying the real meaning behind them, my memories of past losses, and my fears of those looming too near. I'm sorry for the devastation your world is in and I wish you wisdom to know there's a future where the your heart hurts less.
Janine

dr. weiss
Reply To: Fourth Line Chemo for SCLC Extensive

I'm so sorry for your loss. This is a terrible disease. My thoughts and prayers are with you.

Dr West
Reply To: Fourth Line Chemo for SCLC Extensive

I'm very sorry to hear that. Of course, it was never a fair fight. I'm sure you, he, and his doctors did all of the right things, but we are all humbled by the power of a nasty cancer.

With deep sympathy,
Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

cards7up
Reply To: Fourth Line Chemo for SCLC Extensive

I'm sorry to hear of your husband's passing. He had quite a journey and gave it his all. May you find comfort in your love and memories. Take care, Judy

laya d.
Reply To: Fourth Line Chemo for SCLC Extensive

I am so very sorry for your loss. . .and I wish peace for you and your husband's loved ones.

Laya