Deciding not to do chemo

This topic contains 11 replies, has 6 voices, and was last updated by  ranger 4 years, 11 months ago.

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December 10, 2012 at 9:02 am  #1251213    

ranger

I am at the decision stage of having to do chemo. I have a good quality of life right now on Tarceva and it looks like my cancer is progressing. I have Stage IV adenocarcinoma and have been on Tarceva for a little over a year. I have the EGFR 19 mutation. I know the outcome in the end will be the same, so I wonder by doing chemo and not having a good quality of life is a good decision. Is there anyone in this group that decided not to do chemo and how are you feeling?


Diagnosed with Stage IV lung cancer on August 27, 2011. Have EGFR 19 mutation. Started Tarceva October 1, 2011. First CT Scan showed dramatic reduction in size and numbers of nodules. Second Scan showed “stable”. Aug. 2012 scan still was “stable”. Decided to get a second opinion and that lung oncologist told me that I was not stable after looking at my CT scans. Wow what a shock that was when one oncologist, who is not a lung oncologist says you are stable when you are not! That is why on Nov. 6 I had a needle biopsy to retest my tissue for current mutations, etc.

December 10, 2012 at 9:58 am  #1251218    
catdander forum moderator
catdander forum moderator

Hi ranger, I hope others will respond here to your inquiry. It’s such a brave question to put out there. I wonder if you’ve put your question out to other boards. I’m not a frequenter of other boards but I know many here also use Lungevity and we have a partnership with them in doing video specialists discussions. I say this because of our doctors are treaters they treat cancer and mostly answer questions about being treated.

That said we do have quite a bit written on hospice care. A service with which I hope my husband will have a very long relationship. Have you read any of our pieces on it. (you may need to log off to access and our search feature depending on your browser, but it’s worth it),

http://cancergrace.org/search-results?q=hospice%20care

Also have you read anything about managing life along with chemo treatment? I understand it may be absolutely right for you to not take chemo, but I think it’s important that you know many people do well for periods of time on chemo. Some have very little side effects.
Maybe the most important piece of info I want to give you about chemo is, you can start it, even with a single agent and stop it whenever you like and recover quickly from the side effects. I won’t say anymore about chemo since you didn’t ask.

Keep us posted and please continue to ask questions,
Janine
forum moderator

December 10, 2012 at 10:23 am  #1251221    

certain spring

Hallo Ranger. I’m sorry to hear about this. Do you feel able to say what kind of progression you are faced with? I take it the mutation testing did not yield anything useful?
I suppose one thing to say is that “no chemo” doesn’t need to mean “no treatment”. There is a middle way. There are drugs you can take as pills, even post-Tarceva, and there’s radiation.
However I respect and understand your reasoning. (“The outcome in the end will be the same”). I hated chemotherapy, and felt better off it than on, even when the cancer was growing. For me, it would depend on whether I wanted to try and buy some extra time, and what my state of health was. (I don’t have children to consider – that would certainly make a difference.)
I did have a period off any treatment, and felt OK actually, but it didn’t last very long. My husband and I tried to get some sense from the palliative care nurses of what might happen, and how things might unfold, but they were very resistant – perhaps it really is true that every patient is different. I take that to be part of your question – “how fast will I go downhill?”
Anyway, thanks for asking this question and opening up this conversation. It is something I think about a lot so I am grateful. I hope you get useful input here. Very best.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

December 10, 2012 at 6:16 pm  #1251229    

cards7up

Not everyone has extreme side effects and with all the new meds to help counter-act and attack before they get extreme, chemo is doable. Don’t know your age or the extent of your “progression”, this might be helpful to share. Let us know the mutation results and amount of progression and where.
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

December 10, 2012 at 6:42 pm  #1251231    

judys

I’m not who you asked to hear from but I wanted to respond anyway…. Read my signature and you’ll see I have had lots of chemo. Yes, I feel better when I’m not on it, but has it ever been so awful I’ve stopped before the number of treatments recommended? No.

I’m bald for the third time; I don’t like it but it’s doable; I haven’t had bad neuropathy or low blood counts. I’m almost 6 years out and have never been hospitalized or even gone to urgent care. Obviously not everyone has this result. But the chemo hasn’t left me in bad shape. I’ve really rebounded after my taxotere treatments ended in October – am walking, climbing stairs with no problem etc.

Chemo might work for you. My cancer has seen shrinkage ONLY while on chemo. Tarceva did keep things stable for a long time though. (I’ve never had mutation testing; it wasn’t done regularly in early 2007 and wouldn’t have changed my treatment plan. We will probably do it now when something is growing again because it certainly might change my next treatments.)

I guess I want to encourage you to think about at least trying chemo. Like Janine said you can always stop. Over these years I have lost too many LC friends, but I have to say they all had tried chemo and I don’t think regretted their decisions.

I live in a state that has a Death with Dignity law and my oncologist has never said I qualify yet for the prescription (less than six months to live) though I ask every now and then. (I’d feel better having the prescription meds in hand.) I say this just to show you I’m not willing to live with a crappy QoL. I never expected to celebrate my 70th birthday (next week!), but I’ll undergo all the treatments I can so I’m still here for my parents, husband, friends and family without being a burden on them. I have to say I lead a pretty normal life…. I

hope you don’t mind me chiming in. I guess with my birthday coming up, I’ve done lots of reflecting on these last 6 years.


Never-smoker; Diagnosed 2/2007 at age 64 with NSCLC adenocarcinoma, Stage 3b. Carboplatin/taxol/avastin: 3/07 – 6/07; radiation 8/07 -9/07; Avastin 10/07 – 12/07; Nodules in prev.clear rt lung; repeated carbo/taxol/avastin 1/08 – 3/08; Tarceva 4/08 – 9/11; radiation to soft tissue mass between two ribs 10/11; Alimta 10/11 – 2/12; treatment break; return to Alimta 5/12 – 6/12. Taxotere 7/12 – 10/12; treatment break 11/12 – 1/13; scan showed progression 1/13; restarted taxotere with zometa 2/13

December 10, 2012 at 7:08 pm  #1251233    

ranger

Thank you all for your replys! I had a CT scan today and according to my first onc I am stable! Great news but since I had another onc say I wasn’t stable on my last CT I am actually going out for a third opinion on my CT scans. I really hope that I am stable but after posting this and seeing what people had to say I would really have to think about considering chemo. I tend to go back and forth on this issue and I see from peoples responses that it is not a clear cut answer.


Diagnosed with Stage IV lung cancer on August 27, 2011. Have EGFR 19 mutation. Started Tarceva October 1, 2011. First CT Scan showed dramatic reduction in size and numbers of nodules. Second Scan showed “stable”. Aug. 2012 scan still was “stable”. Decided to get a second opinion and that lung oncologist told me that I was not stable after looking at my CT scans. Wow what a shock that was when one oncologist, who is not a lung oncologist says you are stable when you are not! That is why on Nov. 6 I had a needle biopsy to retest my tissue for current mutations, etc.

December 10, 2012 at 8:22 pm  #1251237    
Dr West
Dr West

I would make a few points here.

1) People with an EGFR mutation tend to have cancers that are often more responsive to standard chemo as well.

2) There is a wide range in how individual patients tolerate chemotherapy. There is also an enormous range of regimens for cancer, so I am very wary of people categorically dismissing chemotherapy for being too toxic. I have had patients ask me if it’s OK to go to the gym to work out on the same day they get chemo.

3) Chemo is not a cell phone contract. You can stop after one cycle, even one day’s treatment, if you find it unacceptable, and it’s routine to make adjustments in dose, schedule, and perhaps fine tune the treatments involved. You can dip your toe in the water without committing to years of chemotherapy.

It’s a complex issue, but I would say that for many patients, the anticipated benefits definitely exceed the risks. And when you can always make changes or stop if it’s not acceptable, I see there being far more to gain than to lose by at least trying chemo. In many, many cases, it’s easier than people expect. In those for whom it isn’t, I think there’s a value in having tried and knowing that it’s not right for them, rather than dismissing the concept alone.

-Dr. West
(a medical oncologist who gives chemo for a living, so I certainly have an acknowledged bias)

December 10, 2012 at 8:48 pm  #1251239    

ranger

Thank you Dr. West for your comments. You have made a lot of very good points and if I need to do chemo I may test the waters based on what you said.


Diagnosed with Stage IV lung cancer on August 27, 2011. Have EGFR 19 mutation. Started Tarceva October 1, 2011. First CT Scan showed dramatic reduction in size and numbers of nodules. Second Scan showed “stable”. Aug. 2012 scan still was “stable”. Decided to get a second opinion and that lung oncologist told me that I was not stable after looking at my CT scans. Wow what a shock that was when one oncologist, who is not a lung oncologist says you are stable when you are not! That is why on Nov. 6 I had a needle biopsy to retest my tissue for current mutations, etc.

December 11, 2012 at 10:02 am  #1251258    
catdander forum moderator
catdander forum moderator

Cell phone contract, haha

You know ranger, all you had to do was give me a sign and I’ll load you info

Another thought that about whether this merits a change, a quote from Dr. West, ” In terms of “what next?”, any of those three choices is very good, and I can’t imagine you’ll burn any bridges by being deliberate and slow in making decisions. There isn’t a best answer for slow progression, but I think most experts advocate sitting tight until progression becomes more clinically significant than a debatable enlargement of a nodule in the range of a few millimeters.” from, http://cancergrace.org/forums/index.php?topic=9633.0

and http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/

Janine

December 11, 2012 at 1:45 pm  #1251266    

ranger

Thank you catdander. I looked at those websites and have decided that I have “over reacted” to my CT scans and that if I am progressing it is a slow progression, so I need to calm down and take a deep breath and not do anything at this point.


Diagnosed with Stage IV lung cancer on August 27, 2011. Have EGFR 19 mutation. Started Tarceva October 1, 2011. First CT Scan showed dramatic reduction in size and numbers of nodules. Second Scan showed “stable”. Aug. 2012 scan still was “stable”. Decided to get a second opinion and that lung oncologist told me that I was not stable after looking at my CT scans. Wow what a shock that was when one oncologist, who is not a lung oncologist says you are stable when you are not! That is why on Nov. 6 I had a needle biopsy to retest my tissue for current mutations, etc.

December 11, 2012 at 4:08 pm  #1251267    
catdander forum moderator
catdander forum moderator

ranger, I respect the way you think. When my husband was first diagnosed I had no idea of what to expect or what should happen. Like so many of us who come to Grace I not only want to make sure he was getting the best treatment but by putting things into perspective I am able to breathe easier and settle down a bit. Lung cancer is a very difficult subject to learn when your in the middle of the most devastating circumstances of a lifetime. Grace is such a great place to learn. Welcome.

Breathe easier,
Janine

December 11, 2012 at 6:48 pm  #1251274    

ranger

catdander thanks for your post. Sometimes I think it is all in the mental outlook that we have on dealing with this horrible disease. I have been at this now for 15 months and I usually have come to terms with it and have accepted it, but occassionally it all gets away from me and bringing it back in helps!
Thank you!


Diagnosed with Stage IV lung cancer on August 27, 2011. Have EGFR 19 mutation. Started Tarceva October 1, 2011. First CT Scan showed dramatic reduction in size and numbers of nodules. Second Scan showed “stable”. Aug. 2012 scan still was “stable”. Decided to get a second opinion and that lung oncologist told me that I was not stable after looking at my CT scans. Wow what a shock that was when one oncologist, who is not a lung oncologist says you are stable when you are not! That is why on Nov. 6 I had a needle biopsy to retest my tissue for current mutations, etc.

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