Fourth Line Chemo for SCLC Extensive - 1245292

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

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-tre…

"...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

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.

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

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.

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

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

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.

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

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

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

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.

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

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

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

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.

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

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.

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

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

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

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

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.

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

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

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.

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

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

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.

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

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

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

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

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

Laya