fatigue or depression

daisy366
daisy366 Member Posts: 1,458 Member
Hi ladies,

I have been on doxil since late Sept. and have been dealing with extreme fatigue since then. My doctor thought I should take an antidepressant which I have been on for 3.5 weeks and actually more fatigued/depressed. I am now referred for counseling which I am not opposed to. I think I am worse mentally - I have even thought of stopping chemo altogether since this is no way to live.

I have decided to wean off the antidepressant and started today. One of side effects of lexapro for 13% is extreme fatigue - maybe I fit that category.

I know Beila is dealing with fatigue also but spoke with another who is doing very well on doxil.

I thought I would share this, if anyone has feedback.

Mary Ann
«1

Comments

  • nancibee
    nancibee Member Posts: 59 Member
    Fatigue
    I used to take Provigil. It is prescribed to people who suffer fatigue from MS or narcolepsy. It made an amazing difference at first but I think I may have built up a tolerance to it.

    I find the best thing for my fatigue is to keep active. When I am sitting at my desk, I get intense fatigue usually right around 1 PM. But if I use the treadmill regularly or walk, I don't have fatigue as much.

    I went off the anti-depressants for other reasons - severe constipation and high blood pressure.
  • beila
    beila Member Posts: 97 Member
    fatigue/depression
    hi Mary Ann
    I bet you have both
    Do you feel somewhat better in the 3rd week post chemo?
    This and last cycle I have spent most of 2 weeks in bed.
    But the 3rd week, better.....a few days ago I actually went out to eat with a friend in a restaurant....I never had such an enjoyable restaurant experience in my life.
    That week of feeling better wards off the depression, as it gives evidence that the extreme fatigue is Doxil related and TEMPORARY

    If it is kicking our ****, hopefully it is kicking cancer's ****!!!

    One of the things that helps me most re not getting depressed is my main role model...a friend of mine who was on Doxil 5 yrs ago for recurrence of breast cancer...she said she spent most of 5 months in bed
    But it totally worked, and for the past 5 yrs she is cancer free and back to her normal high energy life

    So...."keep your eyes on the prize"

    I am not pushing antidepressants, but there are certainly some that are stimulating and not sedating

    One day at a time, and it will be worth it if we are like my friend, right?

    Am off to my MD now
    She actually lowered the dose of Doxil this past month because the last one was so bad I actually went to the ER (and this time as a patient, not a doc!...definitely prefer the latter!)

    All the Best,
    Beila
  • daisy366
    daisy366 Member Posts: 1,458 Member
    beila said:

    fatigue/depression
    hi Mary Ann
    I bet you have both
    Do you feel somewhat better in the 3rd week post chemo?
    This and last cycle I have spent most of 2 weeks in bed.
    But the 3rd week, better.....a few days ago I actually went out to eat with a friend in a restaurant....I never had such an enjoyable restaurant experience in my life.
    That week of feeling better wards off the depression, as it gives evidence that the extreme fatigue is Doxil related and TEMPORARY

    If it is kicking our ****, hopefully it is kicking cancer's ****!!!

    One of the things that helps me most re not getting depressed is my main role model...a friend of mine who was on Doxil 5 yrs ago for recurrence of breast cancer...she said she spent most of 5 months in bed
    But it totally worked, and for the past 5 yrs she is cancer free and back to her normal high energy life

    So...."keep your eyes on the prize"

    I am not pushing antidepressants, but there are certainly some that are stimulating and not sedating

    One day at a time, and it will be worth it if we are like my friend, right?

    Am off to my MD now
    She actually lowered the dose of Doxil this past month because the last one was so bad I actually went to the ER (and this time as a patient, not a doc!...definitely prefer the latter!)

    All the Best,
    Beila

    Thanks, Beila
    Your friend's story is uplifting. 5 months OMG. No, I feel the same each week actually a bit worse since starting lexapro.

    I am still walking daily - between 1 and 2 miles. But I get very winded. I just asked my nurse if it could be heart damage!! I really am not a catastrophzer but someone asked me that and it got me thinking.

    Well I will just keep marching on. And will see the psych doctor tomorrow.

    Thanks also to Nancibee.

    Love, Mary Ann
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    daisy366 said:

    Thanks, Beila
    Your friend's story is uplifting. 5 months OMG. No, I feel the same each week actually a bit worse since starting lexapro.

    I am still walking daily - between 1 and 2 miles. But I get very winded. I just asked my nurse if it could be heart damage!! I really am not a catastrophzer but someone asked me that and it got me thinking.

    Well I will just keep marching on. And will see the psych doctor tomorrow.

    Thanks also to Nancibee.

    Love, Mary Ann

    Anti-depressants
    Mary Ann,
    Different anti-depressants work for different people. Sometimes you have to experiment with two or three before finding one that works for you. I've recently learned that depression is actually a result of too little Dopamine, and unfortunately Seratonin and Dopamine work in opposition of eachother. Most anti-depressants are SSRI's, which work to elevate Seratonin. This not only reduces the Dopamine, which is what you want more of, but it also interfers with blood sugar levels and the methylation of estrogen. You might want to ask your doctor if he can recommend a drug that will work to elevate Dopamine levels. There is a herbal supplement, which does the same thing, and has worked wonders for me, but I don't know if it would be contraindicated with your chemotherapy.
  • nempark
    nempark Member Posts: 681
    H Daisy
    As you are aware I lost my daughter on November 26. She was dx with acute lymphoblastic Leukemia exactly one year ago. This disease is totally different to what we had. Anyway, Daisy from the time she started her chemo she was never the same, she never went back to work and was never able to do anything for more than about 15 minutes. My poor daughter never really had a good day in one year. Fortunately, I cannot say that she suffered. She was constantly tired sometimes even too tired to eat, but still she did not get depressed. If she did she did not tell me. She went for check up on October 26 and was running a fever 99.6 and the Doc who was on call told her to stay in for some fluids, she never came home. This was just after her 7th chemo she had one last chemo to go. Doc said he would stop it and she insisted that they do something else. He did try LiposomalVincristine for patients who relapsed. I honestly think that was no good, she had just two sessions and then she went down hill. But I should be fair.. They did tell me that she was already far gone. How and why did this happen after all the treatments she has is just not right. Daisy, I am so sorry you are thinking of stopping the chemo only you can make that decision, but I have seen how harsh this is. Maybe, if you get some counselling it may help you to feel better. I am still haveing issues with my abdomen after surgery 3 years ago. I did have a ct scan and showed nothing. Recently when my daughter was in hospital I had a pap and because I didn't whant to be sick when she was sick I did not ever call for the results. I hope you can work something out soon and get rid of the ugly feelings. Please be well
  • pipscout
    pipscout Member Posts: 24
    doxil fatigue
    Hello,

    I'm so sorry to hear about your fatigue and discouragement with doxil and depression. I am surprised that you said you still can walk a mile or two a day! I have trouble with prolonged walking.

    I have been able to work and do most things, but have to nap about two hours every day (been on doxil since August). I also get winded when walking more than a quarter mile or so. Yesterday I went to a museum exhibit and noticed that I had to sit down every other room or so.
    Doxil seems overall more fatiguing than the Taxol I was on two years ago. Friends have commented that it's taking me longer to reply to emails and things. I think there are more things that fall by the wayside.

    You might also check into your Vitamin D level. I know it can become very depleted this time of year and with treatment.

    I did get news that my cancer is responding to the Doxil. No new spread and tumors shrinking. So, I am hoping it is worth it! The plan right now is to stay on it monthly while I'm getting results.

    Take care, my best to you! Teresa
  • jazzy1
    jazzy1 Member Posts: 1,379
    pipscout said:

    doxil fatigue
    Hello,

    I'm so sorry to hear about your fatigue and discouragement with doxil and depression. I am surprised that you said you still can walk a mile or two a day! I have trouble with prolonged walking.

    I have been able to work and do most things, but have to nap about two hours every day (been on doxil since August). I also get winded when walking more than a quarter mile or so. Yesterday I went to a museum exhibit and noticed that I had to sit down every other room or so.
    Doxil seems overall more fatiguing than the Taxol I was on two years ago. Friends have commented that it's taking me longer to reply to emails and things. I think there are more things that fall by the wayside.

    You might also check into your Vitamin D level. I know it can become very depleted this time of year and with treatment.

    I did get news that my cancer is responding to the Doxil. No new spread and tumors shrinking. So, I am hoping it is worth it! The plan right now is to stay on it monthly while I'm getting results.

    Take care, my best to you! Teresa

    Mary Ann
    I'm so sorry to read of your challenges with doxil. Unfortunately I can't give you much advice, but know I'm here in support.

    I know you're a fighter and hope you can keep the strength and faith to keep on with the treatments. Very tough when one is depressed and fatigued, as it really pulls us in the dumpster. Possibly some type of "happy" drug can keep you moving up.

    Wow...and still walking...what a gal!!! See I said you're a fighter, as we both know movement is so important.

    Be strong and I have to agree with Teresa, have you had your Vit D levels checked? That's such a very important supplement and has lots of help with the disease fight.

    We're all pulling for you....keep smiling!
    Jan
  • Shell bug
    Shell bug Member Posts: 76
    Hi!
    I just wanted you to

    Hi!

    I just wanted you to know that I am thinking and praying for you every day. I am so sorry you are going through this tough time.

    I, too, get down in the dumps and have to find some way to pull myself out. I am really tired some days and I have to force myself to get out of bed to go to work. I try to remind myself to be thankful that I can go to work and make the most of it.

    I know I've told you this before, but you truly have helped me through my journey with this thing. I wish I could do more to help you, but I just hope that you find peace and comfort. I, personally, hope you continue to fight this thing, and I am always thinking of you. You will know the right decision, just find a quiet place and listen.

    Thanks and I care so much for you...

    Rachelle
  • ConnieSW
    ConnieSW Member Posts: 1,677 Member
    Mary Ann, I have been thinking about you
    So much and wishing I could help. Just 2 things come to mind: 1. As a nurse, I know how long it can take to find the right antidepressant or mixture of meds. It can be so frustrating but when it finally happens, it makes such a difference. So work with your counselor until you find your "cocktail". 2. I live not too far from Saranac Lake, NY so when I was enduring my fatigue and dizziness, I often thought about the TB patients in the cure cottages of the past and how they had to remain on bed rest, totally inactive, sometimes for years. How horrible and how weak they would have become. Somehow they did it. You are a tough cookie and have a lot to live for. I am grateful you were there when I began this journey. Fight as long as you can. I hope there is a victory out there for you.

    Connie
  • Sisters three
    Sisters three Member Posts: 165 Member
    ConnieSW said:

    Mary Ann, I have been thinking about you
    So much and wishing I could help. Just 2 things come to mind: 1. As a nurse, I know how long it can take to find the right antidepressant or mixture of meds. It can be so frustrating but when it finally happens, it makes such a difference. So work with your counselor until you find your "cocktail". 2. I live not too far from Saranac Lake, NY so when I was enduring my fatigue and dizziness, I often thought about the TB patients in the cure cottages of the past and how they had to remain on bed rest, totally inactive, sometimes for years. How horrible and how weak they would have become. Somehow they did it. You are a tough cookie and have a lot to live for. I am grateful you were there when I began this journey. Fight as long as you can. I hope there is a victory out there for you.

    Connie

    I just re-read your post, wondering how you are
    I'm the one who doesn't know anything other than basic diagnosis from pap and uterine biopsy. So I've been just hanging out and learning what I can from you ladies. I have read several posts from all of you and it's funny how you kind of get a feel for each personality. I the silly new one is worried about you the strong, active upbeat one.

    HOW YA DOIN??????? Feeling any better since your last post? I sure hope so.

    (I finally got my CT scan today, had to drink interesting beverages and have a contrast dye in an IV, afterwards I needed to do a bunch of errands since husbands surgery is Monday, but I had to come home. MY GOSH what do they put in those drinks! The sounds coming out of me were much like
    A bunch of cow pokes on a cattle drive eating beans!!!!!!!!)

    Did I make you laugh???????

    Lisa
  • daisy366
    daisy366 Member Posts: 1,458 Member

    I just re-read your post, wondering how you are
    I'm the one who doesn't know anything other than basic diagnosis from pap and uterine biopsy. So I've been just hanging out and learning what I can from you ladies. I have read several posts from all of you and it's funny how you kind of get a feel for each personality. I the silly new one is worried about you the strong, active upbeat one.

    HOW YA DOIN??????? Feeling any better since your last post? I sure hope so.

    (I finally got my CT scan today, had to drink interesting beverages and have a contrast dye in an IV, afterwards I needed to do a bunch of errands since husbands surgery is Monday, but I had to come home. MY GOSH what do they put in those drinks! The sounds coming out of me were much like
    A bunch of cow pokes on a cattle drive eating beans!!!!!!!!)

    Did I make you laugh???????

    Lisa

    Yes, Lisa, you did!!
    I sure remember the gas attacks!!! I love your sense of humor and this will help you alot on this journey. I Hope you are recovered and that you get some answers soon - positive ones too.

    Well, I will give you and others my status. Monday I was so exhausted I decided not to sing in my symphony chorus (we have 3 concerts this weekend!!). Even the thought of the rehearsal and performance demands exhausted me, so I decided to bow out this week which was hard for me since this is one of my favorite things to do. I did enjoy the Friday night performance in Naples FL - totally awesome. Our group sang with a 20+ orchestra in an acoustically perfect church.

    I saw a palliative care team Tuesday. My nurse referred me there due to my thoughts of discontinuing treatment and talking about not wanting to live with such fatigue. I must have scared her. She said not to worry that this is called "palliative care" (we all know what that means!!). Anyway, the team was composed of a doctor, pharmacist, social worker, nurse navigator (advocate/troubleshooter), nutritionist, and psychiatrist. (What a billing bonanza for them!!). They said their goal was to help patients manage symptoms and keep people like me in treatment. They confirmed that doxil is a hard regime and that many drop out as a result. I will continue to see them for awhile.

    They gave me suggestions such as hydrating more (I have not been drinking enough and they said that dehydration will increase fatigue), eat protein every 3-4 hours, take zofran when stomach queasy and take senna with zofran. Re: depression (symptoms include fatigue) they discontinued the lexapro and recommended remeron which should help with sleep.

    Remeron helped on first night but then sleep problems continued so I added ativan last night and I did finally get a decent sleep. I hope this continues.

    I'm due for next doxil this week but want to see what CA125 is before getting it. If my marker goes up I plan to consult with doctor before continuing doxil.

    So that's the long and short of it. My husband is going to take FMLA on and off to help and encourage me - he's very sweet and coincidentally a hospice social worker!! I'm in good hands. Today I will coach him through my holiday bread baking routine. He doesn't want to miss out on that!

    I hope you and all hear get encouraging news this week!!! Love you all. Thanks for being there for me.

    Hugs, Mary Ann
  • beila
    beila Member Posts: 97 Member
    daisy366 said:

    Yes, Lisa, you did!!
    I sure remember the gas attacks!!! I love your sense of humor and this will help you alot on this journey. I Hope you are recovered and that you get some answers soon - positive ones too.

    Well, I will give you and others my status. Monday I was so exhausted I decided not to sing in my symphony chorus (we have 3 concerts this weekend!!). Even the thought of the rehearsal and performance demands exhausted me, so I decided to bow out this week which was hard for me since this is one of my favorite things to do. I did enjoy the Friday night performance in Naples FL - totally awesome. Our group sang with a 20+ orchestra in an acoustically perfect church.

    I saw a palliative care team Tuesday. My nurse referred me there due to my thoughts of discontinuing treatment and talking about not wanting to live with such fatigue. I must have scared her. She said not to worry that this is called "palliative care" (we all know what that means!!). Anyway, the team was composed of a doctor, pharmacist, social worker, nurse navigator (advocate/troubleshooter), nutritionist, and psychiatrist. (What a billing bonanza for them!!). They said their goal was to help patients manage symptoms and keep people like me in treatment. They confirmed that doxil is a hard regime and that many drop out as a result. I will continue to see them for awhile.

    They gave me suggestions such as hydrating more (I have not been drinking enough and they said that dehydration will increase fatigue), eat protein every 3-4 hours, take zofran when stomach queasy and take senna with zofran. Re: depression (symptoms include fatigue) they discontinued the lexapro and recommended remeron which should help with sleep.

    Remeron helped on first night but then sleep problems continued so I added ativan last night and I did finally get a decent sleep. I hope this continues.

    I'm due for next doxil this week but want to see what CA125 is before getting it. If my marker goes up I plan to consult with doctor before continuing doxil.

    So that's the long and short of it. My husband is going to take FMLA on and off to help and encourage me - he's very sweet and coincidentally a hospice social worker!! I'm in good hands. Today I will coach him through my holiday bread baking routine. He doesn't want to miss out on that!

    I hope you and all hear get encouraging news this week!!! Love you all. Thanks for being there for me.

    Hugs, Mary Ann

    ?????giving up ?????......"tough love"
    Mary Ann

    I am an emergency MD who used to live in New York, so please forgive me if I tend to be blunt and to the point.

    I dont understand how you could consider stopping treatment (unless it really is not working ) just because of side effects, WHICH ARE TEMPORARY!!!! Everyone knows that some chemos have very unpleasant side effects, and everyone knows people who have come through them and are doing well now.
    When I read that you can only walk a mile, etc.....I am IN BED for half of the 3 week cycle.....of course it helps that I have several role models who have come through to the other side, some of whom are cancer-free
    IS IT NOT WORTH IT?????

    Come on Mary Ann....take Ativan, antidepressant, tylenol, whatever helps you....take up knitting, etc during your fatigue, breakfast in bed parties,etc

    I heard that it takes about 4 treatments for Doxil to show some positive CA 125 results

    DONT GIVE UP PREMATURELY!!!!!

    think about my friend who I mentioned to you....after months of bad Doxil fatigue...much worse than yours., for the past 5 years she is back to her super high energy self, enjoying life, helping others......role models help me alot....there are so many...

    KEEP YOUR EYES ON THE PRIZE!!!!

    BEILA

    ps in addition to hydration (I have a really hard time complying too), are you taking Vitamin D?
  • Ro10
    Ro10 Member Posts: 1,561 Member
    daisy366 said:

    Yes, Lisa, you did!!
    I sure remember the gas attacks!!! I love your sense of humor and this will help you alot on this journey. I Hope you are recovered and that you get some answers soon - positive ones too.

    Well, I will give you and others my status. Monday I was so exhausted I decided not to sing in my symphony chorus (we have 3 concerts this weekend!!). Even the thought of the rehearsal and performance demands exhausted me, so I decided to bow out this week which was hard for me since this is one of my favorite things to do. I did enjoy the Friday night performance in Naples FL - totally awesome. Our group sang with a 20+ orchestra in an acoustically perfect church.

    I saw a palliative care team Tuesday. My nurse referred me there due to my thoughts of discontinuing treatment and talking about not wanting to live with such fatigue. I must have scared her. She said not to worry that this is called "palliative care" (we all know what that means!!). Anyway, the team was composed of a doctor, pharmacist, social worker, nurse navigator (advocate/troubleshooter), nutritionist, and psychiatrist. (What a billing bonanza for them!!). They said their goal was to help patients manage symptoms and keep people like me in treatment. They confirmed that doxil is a hard regime and that many drop out as a result. I will continue to see them for awhile.

    They gave me suggestions such as hydrating more (I have not been drinking enough and they said that dehydration will increase fatigue), eat protein every 3-4 hours, take zofran when stomach queasy and take senna with zofran. Re: depression (symptoms include fatigue) they discontinued the lexapro and recommended remeron which should help with sleep.

    Remeron helped on first night but then sleep problems continued so I added ativan last night and I did finally get a decent sleep. I hope this continues.

    I'm due for next doxil this week but want to see what CA125 is before getting it. If my marker goes up I plan to consult with doctor before continuing doxil.

    So that's the long and short of it. My husband is going to take FMLA on and off to help and encourage me - he's very sweet and coincidentally a hospice social worker!! I'm in good hands. Today I will coach him through my holiday bread baking routine. He doesn't want to miss out on that!

    I hope you and all hear get encouraging news this week!!! Love you all. Thanks for being there for me.

    Hugs, Mary Ann

    Mary Ann
    I am so sorry you are having such a rough time with your Doxl treatments. I am sorry the fatigue is getting the best of you.
    You are able to walk still, so that has to be encouraging.

    I am sorry you missed one of your concerts. I know how much you enjoy the singing. I am sure the concerts are beautiful.
    It always gave you something to look forward, to. A great diversion from thinking about cancer.

    Remember that Linda talked about the CA 125 rising when first starting Doxil. That does not mean it is not working. If there is
    progression of the disease or increase in symptoms, it means it is not working. So I hope you do not base your decision to stop the
    Doxil because there is not a fall in the CA 125. Don't you have a PET Scan scheduled in January?

    I am glad you saw a palliative team to help you with your symptoms. That is what the palliative team is for..... to make you more
    comfortable. I hope you follow their suggestions to use the ativan. Getting a good nights sleep makes the next day so much better.
    I hope the hydration and extra protein gives you more energy, too. I hope that when the fatigue gets better the depression gets
    beter, too.

    Good luck with "coaching" Rudy on bread baking. Has he helped you other years that he won't need a lot of "coaching? Glad he i
    able to take some FMLA. He will be a great support for you with his expertise as a hospice socai worker.

    You are an important member of this board. We are here to listen to you and support you. Good luck in making your decision this
    week. In peace and caring.
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Ro10 said:

    Mary Ann
    I am so sorry you are having such a rough time with your Doxl treatments. I am sorry the fatigue is getting the best of you.
    You are able to walk still, so that has to be encouraging.

    I am sorry you missed one of your concerts. I know how much you enjoy the singing. I am sure the concerts are beautiful.
    It always gave you something to look forward, to. A great diversion from thinking about cancer.

    Remember that Linda talked about the CA 125 rising when first starting Doxil. That does not mean it is not working. If there is
    progression of the disease or increase in symptoms, it means it is not working. So I hope you do not base your decision to stop the
    Doxil because there is not a fall in the CA 125. Don't you have a PET Scan scheduled in January?

    I am glad you saw a palliative team to help you with your symptoms. That is what the palliative team is for..... to make you more
    comfortable. I hope you follow their suggestions to use the ativan. Getting a good nights sleep makes the next day so much better.
    I hope the hydration and extra protein gives you more energy, too. I hope that when the fatigue gets better the depression gets
    beter, too.

    Good luck with "coaching" Rudy on bread baking. Has he helped you other years that he won't need a lot of "coaching? Glad he i
    able to take some FMLA. He will be a great support for you with his expertise as a hospice socai worker.

    You are an important member of this board. We are here to listen to you and support you. Good luck in making your decision this
    week. In peace and caring.

    Oh, my!
    I'm so sorry to hear you're having such a tough time, Mary Ann. You're seeking the medical help you need as well as posting for our support, and you're exploring options. You've received lots of good vibes from us and I'm adding mine. I hope you can find a solution that works for you and helps you find joy.

    Best wishes, hugs, and prayers,

    Suzanne
  • Cindy Bear
    Cindy Bear Member Posts: 569
    Hello Mary Ann
    I don't post much anymore, still check in occasionally to see how my gals are all doing.. I am sorry to hear of your fatigue.. I have heard it can be the absolute worst... you are an amazing lady, strong, courageous, honest... a straight shooter.. Hoping you get some relief soon and that the little changes the palliative team is suggesting do wonders. You still amaze me with the energy you do have.. good luck with that bread baking..keep us posted.
    Big Hugs,
    Cindy
  • NorahS
    NorahS Member Posts: 92

    Hello Mary Ann
    I don't post much anymore, still check in occasionally to see how my gals are all doing.. I am sorry to hear of your fatigue.. I have heard it can be the absolute worst... you are an amazing lady, strong, courageous, honest... a straight shooter.. Hoping you get some relief soon and that the little changes the palliative team is suggesting do wonders. You still amaze me with the energy you do have.. good luck with that bread baking..keep us posted.
    Big Hugs,
    Cindy

    Hello Mary Ann...
    ...I have read many of your very good posts over the last while and have enjoyed getting to know you a little bit through them.

    I am sorry to hear that you are experiencing such fatigue with your Doxil, and hope that you get some relief soon.

    It's encouraging to hear that you and your husband are working together to get the holiday bread baking done and that he is so sweet and helpful to you at this time. It's also encouraging to hear that you've met with the palliative care team and plan on meeting with them again. Hope that they are able to help.

    Also, your post made me think about the word "palliative" - as I thought I knew the meaning of the word - but it turns out I don't. I looked it up and the word "palliative" means: "relieving pain or alleviating a problem without dealing with the underlying cause" and another source says it means: "Relieving or soothing the symptoms of a disease or disorder without effecting a cure"
  • laura25
    laura25 Member Posts: 180 Member
    daisy366 said:

    Yes, Lisa, you did!!
    I sure remember the gas attacks!!! I love your sense of humor and this will help you alot on this journey. I Hope you are recovered and that you get some answers soon - positive ones too.

    Well, I will give you and others my status. Monday I was so exhausted I decided not to sing in my symphony chorus (we have 3 concerts this weekend!!). Even the thought of the rehearsal and performance demands exhausted me, so I decided to bow out this week which was hard for me since this is one of my favorite things to do. I did enjoy the Friday night performance in Naples FL - totally awesome. Our group sang with a 20+ orchestra in an acoustically perfect church.

    I saw a palliative care team Tuesday. My nurse referred me there due to my thoughts of discontinuing treatment and talking about not wanting to live with such fatigue. I must have scared her. She said not to worry that this is called "palliative care" (we all know what that means!!). Anyway, the team was composed of a doctor, pharmacist, social worker, nurse navigator (advocate/troubleshooter), nutritionist, and psychiatrist. (What a billing bonanza for them!!). They said their goal was to help patients manage symptoms and keep people like me in treatment. They confirmed that doxil is a hard regime and that many drop out as a result. I will continue to see them for awhile.

    They gave me suggestions such as hydrating more (I have not been drinking enough and they said that dehydration will increase fatigue), eat protein every 3-4 hours, take zofran when stomach queasy and take senna with zofran. Re: depression (symptoms include fatigue) they discontinued the lexapro and recommended remeron which should help with sleep.

    Remeron helped on first night but then sleep problems continued so I added ativan last night and I did finally get a decent sleep. I hope this continues.

    I'm due for next doxil this week but want to see what CA125 is before getting it. If my marker goes up I plan to consult with doctor before continuing doxil.

    So that's the long and short of it. My husband is going to take FMLA on and off to help and encourage me - he's very sweet and coincidentally a hospice social worker!! I'm in good hands. Today I will coach him through my holiday bread baking routine. He doesn't want to miss out on that!

    I hope you and all hear get encouraging news this week!!! Love you all. Thanks for being there for me.

    Hugs, Mary Ann

    (hugs)
    Hi Mary Ann.. I read your post and my heart goes out to you. You helped me so much, please hang in there. I know it must be hard to face each day feeling the way you do, BUT you are getting through it! My mantra when I was going through chemo was Winston Churchills quote.. "When you are going through hell, keep going!" Keep going Mary Ann!
  • beila
    beila Member Posts: 97 Member
    NorahS said:

    Hello Mary Ann...
    ...I have read many of your very good posts over the last while and have enjoyed getting to know you a little bit through them.

    I am sorry to hear that you are experiencing such fatigue with your Doxil, and hope that you get some relief soon.

    It's encouraging to hear that you and your husband are working together to get the holiday bread baking done and that he is so sweet and helpful to you at this time. It's also encouraging to hear that you've met with the palliative care team and plan on meeting with them again. Hope that they are able to help.

    Also, your post made me think about the word "palliative" - as I thought I knew the meaning of the word - but it turns out I don't. I looked it up and the word "palliative" means: "relieving pain or alleviating a problem without dealing with the underlying cause" and another source says it means: "Relieving or soothing the symptoms of a disease or disorder without effecting a cure"

    Mary Ann
    Hi Mary Ann

    We havent heard from you, but have heard from alot of your support group.
    Hope I didnt scare you off with my frank encouragement

    Hope you are tolerating the fatigue ( I am in bed for the next week), and are taking it one day at a time and are less discouraged

    All the best to you and your husband and enjoy the bread!

    Beila



    ps For nausea, Zofran is TERRIBLY constipating, and our oncology team prescribes STEMETIL, which is well tolerated, and I find nips the nausea or queasy stomach in the bud

    pps love Churchill's quote re:
    "when you are going through Hell, keep going"
  • Ro10
    Ro10 Member Posts: 1,561 Member
    beila said:

    Mary Ann
    Hi Mary Ann

    We havent heard from you, but have heard from alot of your support group.
    Hope I didnt scare you off with my frank encouragement

    Hope you are tolerating the fatigue ( I am in bed for the next week), and are taking it one day at a time and are less discouraged

    All the best to you and your husband and enjoy the bread!

    Beila



    ps For nausea, Zofran is TERRIBLY constipating, and our oncology team prescribes STEMETIL, which is well tolerated, and I find nips the nausea or queasy stomach in the bud

    pps love Churchill's quote re:
    "when you are going through Hell, keep going"

    Beila, thinking of you
    Sorry you are still having such a time with fatigue. Glad you are still able to post and share your knowledge and encouragement. Hope you too are taking it one day at a time and enjoy the good days you have at the end of your cycle.

    Are you still avoiding the "hand/foot" problems? Are you doing anything to prevent it? I've heard from so many that can be a painful problem.

    Nausea has been my main problem when on chemo. Zofran never really helped me. I have not heard of "stemetil" before. I will have to look it up and suggest it for when I go back on chemo again. I have tried Emend, Sancuso patches, compazine and Ativan. Compazine works the best. I am lucky I never have vomiting, just the nausea.

    Hang in there. You remain in my prayers. In peace and caring.
  • beila
    beila Member Posts: 97 Member
    Ro10 said:

    Beila, thinking of you
    Sorry you are still having such a time with fatigue. Glad you are still able to post and share your knowledge and encouragement. Hope you too are taking it one day at a time and enjoy the good days you have at the end of your cycle.

    Are you still avoiding the "hand/foot" problems? Are you doing anything to prevent it? I've heard from so many that can be a painful problem.

    Nausea has been my main problem when on chemo. Zofran never really helped me. I have not heard of "stemetil" before. I will have to look it up and suggest it for when I go back on chemo again. I have tried Emend, Sancuso patches, compazine and Ativan. Compazine works the best. I am lucky I never have vomiting, just the nausea.

    Hang in there. You remain in my prayers. In peace and caring.

    thank you Ro10
    So nice to receive words of support from you.

    I looked up Compazine....unfortunatlely this is the American word for Stemetil....so same thing.
    I find that sometimes it is more of a "heartburn" than actual nausea, so sometimes I take antacids....Zantac, instead of, or in addition to Stemetil


    I have a CT scan after my 4th Doxil/ Avastin (a week ago I had my 3rd)
    Am trying not to think about it and be terrified

    If this is not working, there are other chemos that one could try, right?
    Chemos that I have learned of on this site, like Gemzar, Topotecan Ixabepilone
    This site has helped me with hope and positivity, and role models more than anything else

    I am afraid to ask my Oncologist at this point, as I am afraid she will use the word "chemo-resistant"
    I need reassurrance that there would be other options if necessary...and I hope you all can give me some positive feedback to ward off the terror of hopelessness

    Canada is more conservative/less aggressive in general, and in this in particular.

    I love that the attitude on this site seems to be to manage this like a chronic disease, treating recurrences or non responses with other options. like HIV/AIDS.....wasnt like that in the 1980"s, when I was working with these patients in New York, but it is now!!!
    This is what keeps me going

    gotta go now.....my mother-in -law just brought me soup


    more Anon,
    Beila