Chemo May Not be Working. What can Be Done?

TomM1956728
TomM1956728 Member Posts: 64
in Esophageal Cancer #1
Hello,

My mother is 86 years old and has esophageal cancer. I have asked questions about her health on this website before on several occasions, and I have received valuable feedback and helpful advice from people here. I wanted to ask if you folks could kindly help me once again.

My mother’s cancer has spread outside of her esophagus to her chest area and near her lungs.

She started chemotherapy in March and has been receiving the Folfox 6 treatment. Due to the side effects of her chemo treatments, she was doing chemo once every 3 weeks instead of once every 2 weeks.

Unfortunately, she also took a 2 month break from chemo, so she did not complete her six chemo treatments until August.

At the end of the six chemo cycles, her symptoms had disappeared, and she was not having any pain or any problems swallowing.

A PET Scan was done in August and showed that her cancer had not spread and had shrunk slightly in the chest wall area.

After August, she took a 1 month break from chemo.

Since September, she has undergone 4 chemo cycles. Again, she is having chemo done once every 3 weeks instead of once every 2 weeks. Also, since the chemo’s side effects were bothering her, we asked that the dosage of the Folfox drugs be reduced.

About a month ago, she once again started to have symptoms.

Initially, she started to have pain when swallowing and after swallowing at the juncture of her esophagus and stomach. Then she started to experience pain in the back between her shoulders. Now, she is also having pain in her chest area under her breasts.

She used to experience all these problems in the past but they had all disappeared for about 3 months. Now, they have all come back with greater intensity than before. (The pain is quite unbearable).

I’m very worried since I think this means that the cancer is getting worse.

In view of the above, what do you think can be done?

1. I’m thinking she should continue with chemo.

However, even though the dosage of the chemo has been reduced, the side effects my mother experiences are even more difficult than before. Also, even though the dosage has been reduced, it now takes more than 3 weeks for her white cells to return to normal. So the doctor had to withhold one of the drugs for the last three chemo sessions.

2. Should her drugs be changed? It seems to me that may be her Folfox treatment isn’t as effective as before.

3. Should she get radiation?

I’m really worried and don’t know what can be done.

I know this is a very complex situation and it’s hard to come up with any solutions. But if anyone can think of any ideas or suggestions, or provide any advice, I would deeply appreciate that.

I’d like to thank everyone for their kind attention, time and assistance.

Thank you!

Tom

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • sangora
    sangora Member Posts: 213
    #3
    unknown said:

    This comment has been removed by the Moderator

    Its Important To Know
    Tom, it's important to know what your mom wants at this point. She is the one losing ground and the one in pain. If the oncologist is on top of his/her game, that is what they are going to want to know. I am the patient, stage IV and I can tell you she knows where she wants to go. When the treatments no longer seem to be working, I am not going to keep struggling and will call in Hospice. There is no reason for her to be in pain and that needs to be the push now. Get her pain free and that is a very real solution. This is a difficult time for you and your family and there is no way to take your pain away. But on the other hand, you want no regrets and therefore you need to get her input and keep her comfortable. Sam
  • sangora
    sangora Member Posts: 213
    #4
    unknown said:

    This comment has been removed by the Moderator

    Its Important To Know
    Tom, it's important to know what your mom wants at this point. She is the one losing ground and the one in pain. If the oncologist is on top of his/her game, that is what they are going to want to know. I am the patient, stage IV and I can tell you she knows where she wants to go. When the treatments no longer seem to be working, I am not going to keep struggling and will call in Hospice. There is no reason for her to be in pain and that needs to be the push now. Get her pain free and that is a very real solution. This is a difficult time for you and your family and there is no way to take your pain away. But on the other hand, you want no regrets and therefore you need to get her input and keep her comfortable. Sam
  • Cindy Bear
    Cindy Bear Member Posts: 569
    #5
    Hello
    I lost my BIL to Esoph. cancer in 2010 (he was only 58). I am so sorry you have to be here for your mom. I have to say I agree with William. At 86, with mets, I would suspect her prognosis is quite poor. I would definitely have a heart to heart with her onc. What would he do if this were his mother. Also, what does your mother want to do? I am a firm believer that we never know what choice we would make until we're faced with that situation, but honestly, at 86, I do not believe I would opt for chemo or radiation. We lost a lovely lady from the boards to uterine cancer Nov. 15th. She had treated her cancer very aggressively, was only 58 and full of life. But at the end, when she knew she was terminal, she opted to "preserve the beauty of the time left" (her words) and walked away from active treatment. Hospice was a godsend to her and her family, and she stressed that it's important to call them and establish a relationship in advance. They are all about comfort,and pain mgt. It doesn't mean you're quitting or giving up . It's about preserving the beauty of the time left.
    My heart goes out to you and your mom, whatever choices you make.
    Cindy
  • fredswilma
    fredswilma Member Posts: 185
    #6
    Tom
    I am so sorry that the Chemo your Mum is on appears to be no longer as effective as it once was, my husband Mark (48)is stg iv with mets to the lungs and we have had to make the decision to stop all Chemo as with your Mum, they were no longer effective, it was both the hardest decision and the easiest, the hardest being that there is no longer anything we can fight this horrible disease with, the easiest there is no point putting toxins into Marks body that were only causing him more pain and discomfort, in fact way worse than the Cancer itself.
    As with other suggestions here ask your Mum what she wants to do, make sure she understands as much as she is able, so she can make an informed decision, talk with your Mums onc as to what they would do if mum was their relative.
    The last point is pain is not acceptable, make sure you have access to someone who can keep on top of this whether that is hospice or a palliative care team, and I hate to be negative but tell your Mum, everything that you have ever wanted, really enjoy the time that you have together, it will be very precious, nobody knows the time we have left here but as many stg iv patients and their caregivers will tell you this disease is rampant, symptons can change within moments, so the precious days that are tolerable need to be lived to the full, with a good sprinkling of humour, nothing makes you feel better than a good giggle every so often.
    Wishing you and your Mum the strength and peace that you will need for the time ahead of you both.
    Ann
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • chemosmoker
    chemosmoker Member Posts: 501
    #8
    What YOU would do..
    1.I’m thinking she should continue with chemo.
    HER decision or YOURS?

    2. See #1. Shouldn't matter unless there is SIGNIFICANT change or none at all.

    3. Radiation not usual for EC only.

    Tom,

    I think SHE needs to be asked what she wants to do and how SHE FEELS....

    H O S I P C E is the right answer in MY opinion, can't call them fast enough for HER comfort and enjoyment, of the many months of life she may still have to spend, making memories with you and the family! Pain relief and the right way to spend her time remaining. Again, my opinion.

    With nothing but love and support,

    God Bless.

    Eric
  • suezque1214
    suezque1214 Member Posts: 15
    #9
    What can be done?
    Dear Tom,
    My husband is an EC patient who is on the way to being a survivor. He is 55 years old and has done chemo, radiation, and has had the surgery. He is cancer free at this time.
    I have worked in nursing and rehaabilitation centers for the past 26 years. I have seen similar situations many times.
    My husbands chmo and radiation were horrendous experiences. He lost 50 pounds in a very short time. It made him so ill that if he were to have a recurrence, I don't believe he would seek active treatment.I don't know that he or I would be willing to go thru that again for a few months of life. Quality of life was Zero.
    Talk to your mom, and her oncologist(though ultimately it is Mom's decision). Make her options as clear to her as possible. In the end, Hospice is most likely your best bet. they are the pain control experts. They can also help you through this time with counseling and just providing a shoulder to cry on. I've never met a hospice nurse or aide (and I've worked with many) that wasn't a freind.
    Susan
  • rose20
    rose20 Member Posts: 258
    #10
    Slow down...
    Tom, sounds like you really love and adore your mother and of course you want her with you as long as possible but it's time to think of her quality of life. Please don't try to put her through any more of these horrible treatments at her age. God has been good to her to give her this many years as so many do not have this. Please just love her and seek out hospice care for her.
    Hospice was so good to my dad, they are truly caring and really seek to give the best comfort for the patient.
    My 88 year old Uncle just passed away when they found a small spot on his liver and suggested to him chemo and radiation. I thought then how can the medical field even suggest these treatments to people at this age. To me it is unbelievable. No one wanted him to go through with the treatments but no one wanted to tell him and just let him make his own decision. He did the radiation treatments and right after he got pneumonia after the treatments weakened his lung and he died.
    Before treatments he was so active, tending to his garden, driving to my house which was over an hours drive and bringing us vegetables from the garden, shucking corn faster than anyone I ever seen, going up and down my two flights of stairs.
    So please take the advice that many here have given and start focusing more on quality of life at this point.
    Praying you all make the right decision.
  • chemosmoker
    chemosmoker Member Posts: 501
    #11
    rose20 said:

    Slow down...
    Tom, sounds like you really love and adore your mother and of course you want her with you as long as possible but it's time to think of her quality of life. Please don't try to put her through any more of these horrible treatments at her age. God has been good to her to give her this many years as so many do not have this. Please just love her and seek out hospice care for her.
    Hospice was so good to my dad, they are truly caring and really seek to give the best comfort for the patient.
    My 88 year old Uncle just passed away when they found a small spot on his liver and suggested to him chemo and radiation. I thought then how can the medical field even suggest these treatments to people at this age. To me it is unbelievable. No one wanted him to go through with the treatments but no one wanted to tell him and just let him make his own decision. He did the radiation treatments and right after he got pneumonia after the treatments weakened his lung and he died.
    Before treatments he was so active, tending to his garden, driving to my house which was over an hours drive and bringing us vegetables from the garden, shucking corn faster than anyone I ever seen, going up and down my two flights of stairs.
    So please take the advice that many here have given and start focusing more on quality of life at this point.
    Praying you all make the right decision.

    Amen
    Amen, Rose. Thank you for saying it.


    Eric
  • megmacmd
    megmacmd Member Posts: 85
    #12
    To chemo or not to chemo that is the question
    This is my own personal opinion.For my self a stage4 after 11 rounds of flofox at age 56 and very healthy the first 9 were not horrible usual mouthsores no appetite nausea fatigue but then the peripheral neuropathy set in in feet and finger tips and no taste and always tired they dropped the cisplatinum and spread out thee treatments but quality continued to decline I have never been sick and am in excellent health and I decided enough was enough pet scan showed no progression yeah but this is not a cure at this stage my goal was to continue quality of life I have been off 2months now not as fatigued mouth sores resovling stil no appetite(and I live to eat a did all my family) lost 50 lbs some of that needed but I decided no more chemo this is not curable this is palliative for quality of life and that is slipping away I personaly would rather feel half way decent for 3-6months then suffer for months on end. MY mom had breast cancer at 83 did some chemo then we quit and she played bridge and croquet until the last 2 months in hospice. Same with my dad he was 82 with bladder cancer qnd we quit when quality was going down thetubes. My sister who was 56 with breast cancer did everything but ended up spending her last year bedridden would not have been my choice.Iopt for quality above all when it is at the not cureable point time to pull back and punt (as my late husband would have said)but everyone must make their own decsion.As a doctor myself I know the score and guided my parents through teir choices.This is jut my own take on life and cancer.Im all about quality v quantity Happy returns of the day Meg Mac
  • unclaw2002
    unclaw2002 Member Posts: 599
    #13
    Treatment should be what mom wants . . .
    Tom,

    Unfortunately for chemo to be effective it must be given on schedule and in the right doses. When you have to take breaks and reduce the chemo it may reduce the effectiveness of the treatments and still have the side effects. I remember one oncologist telling us that if the cancer continued to grow and spread or returned within 6 months of the chemo treatment then the chemo really wasn't working. I remember the questions of whether 3 or 2 or 1 agents were appropriate and the discussion that 3 agents were to harsh for my 78 year or dad, but to do only 1 agent wasn't worth it.

    But as others have said what does your mother want? Does she want to spend her last days having chemo poison pumped into her veins when it doesn't seem to be working and is only making her very sick? Would she rather trade 6 months of quality of life with those she loves to perhaps an extra month or two, or perhaps less being sick? These are only questions she can ask and answer. The hard part for the patient I think sometimes is that they think they have to keep fighting to not disappoint us, because we don't want them to leave us, or some of them really do want to go down fighting. But I would say it is important that it is what they want, not what they think we want. We have to give our loved ones, the patient, the permission to make the choice and then support them no matter what that choice is.

    I am sure you don't want to give up and you don't want to lose your mom. Please remember though it isn't what you want but what she wants and needs. These are hard lessons for us but sometimes loving someone requires us to let them go so they can decide what path to walk. And you have a wonderful opportunity to create special memories with her and spend time with her.

    Good luck,
    Cindy
  • birdiequeen
    birdiequeen Member Posts: 319
    #14
    unclaw2002 said:

    Treatment should be what mom wants . . .
    Tom,

    Unfortunately for chemo to be effective it must be given on schedule and in the right doses. When you have to take breaks and reduce the chemo it may reduce the effectiveness of the treatments and still have the side effects. I remember one oncologist telling us that if the cancer continued to grow and spread or returned within 6 months of the chemo treatment then the chemo really wasn't working. I remember the questions of whether 3 or 2 or 1 agents were appropriate and the discussion that 3 agents were to harsh for my 78 year or dad, but to do only 1 agent wasn't worth it.

    But as others have said what does your mother want? Does she want to spend her last days having chemo poison pumped into her veins when it doesn't seem to be working and is only making her very sick? Would she rather trade 6 months of quality of life with those she loves to perhaps an extra month or two, or perhaps less being sick? These are only questions she can ask and answer. The hard part for the patient I think sometimes is that they think they have to keep fighting to not disappoint us, because we don't want them to leave us, or some of them really do want to go down fighting. But I would say it is important that it is what they want, not what they think we want. We have to give our loved ones, the patient, the permission to make the choice and then support them no matter what that choice is.

    I am sure you don't want to give up and you don't want to lose your mom. Please remember though it isn't what you want but what she wants and needs. These are hard lessons for us but sometimes loving someone requires us to let them go so they can decide what path to walk. And you have a wonderful opportunity to create special memories with her and spend time with her.

    Good luck,
    Cindy

    I know no one likes
    I know no one likes stats....but I did read that stage four's that took treatment average survival was X.1 months and those that took no treatment was X.6 months. In other words...according this study, Chemo and Radiation bought the patient 2 weeks. I think given how time consuming treatment is, even if it did not make you sick at all, I'd rather not spend my time at the hospital/treatment center. I'm not the patient though and my decision might be different if I were faced with the question.
  • TomM1956728
    TomM1956728 Member Posts: 64
    #15
    birdiequeen said:

    I know no one likes
    I know no one likes stats....but I did read that stage four's that took treatment average survival was X.1 months and those that took no treatment was X.6 months. In other words...according this study, Chemo and Radiation bought the patient 2 weeks. I think given how time consuming treatment is, even if it did not make you sick at all, I'd rather not spend my time at the hospital/treatment center. I'm not the patient though and my decision might be different if I were faced with the question.

    Thank you all for your kind help!
    Hello Everyone,

    I wanted to thank you all for your kind help regarding my mother’s situation.

    I’m sorry I could not respond earlier. The time I have to spend with my mother, working two jobs and my own poor health leave me little time and energy.

    I did read all your posts and I found the advice you gave to be very helpful. The logic and reasoning you used to answer my questions, and the way you expressed your ideas was really clear.

    Although what you mentioned may have seemed self-evident to you, I’ve been so stressed out that I can’t think, and my mind can’t function due to the worry. Thank you for giving me some simple but highly valuable ideas that would never have occurred to me.

    WilliamWMarshall

    I don’t think I explained my mother’s situation clearly. The cancer is not in her lungs yet. But it has spread close to her lungs.

    I do appreciate your thoughtful advice. You mentioned that I may want to ask the oncologist “What would you do if this were YOUR mother?” Sounds like an excellent approach and I will ask her oncologist that!

    Your suggestion that “less treatment, not more” may be the best option, sounds reasonable. Calling hospice early on rather than near the end also sounds like a great idea. I think Eric (Chemosmoker) had also mentioned this to me.

    Sangora

    You’re quite right. It’s important to know what my mother wants. Since you mentioned that, I’ve had some thoughtful conversations with her.

    Cindy Bear

    I’m sorry to hear that you lost your husband. You mentioned that when cancer is terminal, “it’s about preserving the beauty of the time left.” Well said! My mother and I will try to keep that in mind.

    Fredswilma (Ann)

    So very sorry to hear about your husband’s (Mark’s) stage 4 situation with mets to the lungs. You mentioned that “there is no point putting toxins into Mark’s body that were only causing him more pain and discomfort, in fact, way worse than the cancer itself.” I guess it doesn’t make sense to continue with chemo since you said that the treatment was not effective anymore.

    You also mention that “pain is not acceptable.” That is an important thing I have learned from you folks on this website. I always thought great pain was inevitable. But it appears that the pain can actually be managed and controlled.

    You mention that “This disease is rampant, symptoms can change within moments…” That’s good to know. Sometimes when my mother is feeling okay, I feel like she will overcome this disease. And sometimes when she is feeling bad, I panic and think that it’s all over. It’s a real rollercoaster. From what you and others have said, things can change either way very quickly. Thank you for your comments.

    Baily 1459 (Sherri)

    You mentioned that “Once the treatments are no longer effective, chemo becomes useless as well as toxic.” That’s a good point. There’s no question that, although the chemo is preventing the disease from spreading, it is also causing great damage to my mother’s health. So I guess it doesn’t make any sense to continue poisoning her body when it’s doing no good.

    Eric (Chemosmoker)

    You’ve given me valuable feedback in the past and you’ve once again given me helpful advice. Your right, it should be my mother’s decision, not mine. I think I go overboard in trying to control and run her life. I remember you had pointed out that Hospice is available and can provide valuable help and support. Thanks again for your time and thoughts.

    Susan (Suezque1214)

    Seems like your husband went through unbearable suffering from the chemo and radiation. Thank God that he has recovered!

    You mentioned that you’ve worked in nursing and rehabilitation for 26 years and therefore your comment that you’ve “never met a hospice nurse or aide…that wasn’t a friend” is reassuring. Thank you!

    Rose20

    I’m very sorry to hear about your 88 year old uncle who got pneumonia and passed away after radiation weakened his lung. So sad. Like others, you mention that hospice care may be the best option for her. It’s great to know that hospice was good for your dad.

    Megmac (Megmacmd)

    I’m really sorry that despite the fact that your chemo treatments were spread out and they dropped the cisplatinum, your quality of life continued to decline.

    Your decision to stop treatment was a courageous one. I know that my mother will some day soon have to make the same decision but I really dread it and hope that day will never come (though it obviously will).

    It’s great that even though you’ve stopped treatment for 2 months, you are feeling better. Seems like at a certain point the chemo does more damage than the cancer.

    Apparently, your mom and dad opted to quit treatment instead of continuing to suffer from the side effects. And it seems you do not regret their decision. Like you say, “It’s all about quality v. quantity…above all when it’s at the not curable” stage. I do appreciate your thoughts and hope you are doing well.

    Cindy (Unclaw2002)

    You mention that taking longer breaks and reducing the number of drugs won’t be effective, and will still have serious side effects.

    You also mention that sometimes patients “think they have to keep fighting to not disappoint us.” You say that “Sometimes loving someone requires us to let them go so they can decide what path to walk.” I’ll make sure to find out what my mother wants and not make her feel obligated to continue to fight this dreadful disease if she doesn’t want to.

    Birdiequeen

    The statistic you cited is quite revealing. If treatment for stage 4 patients adds only a short period of time to their lives, then I wonder if it’s really worth going through so much suffering, especially since the additional time is spent in such a weakened state. It’s good to know the stats.

    Thank you all for sharing your thoughts and ideas. The fact that you took time out of your busy schedules to help me is greatly appreciated! Thank you once again!

    A quick update on my mother’s condition. The pet scan she did over a month ago showed that, despite the fact that she is doing chemo once every 3 weeks and at lower doses, the cancer has not spread any further. Thank God! I was extremely happy to hear this especially since she was feeling so much pain and discomfort.

    However, an endoscopy she did last week showed that the tumor in the esophagus is slightly greater in size and more ulcerated with slight bleeding. After approximately 10 months of chemo, I was hoping for a better result, so that was extremely disappointing!

    Once again thank you all so much for listening and helping!

    Tom

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