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fatigue or depression

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

nancibee's picture
nancibee
Posts: 48
Joined: Sep 2012

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
Posts: 97
Joined: Sep 2012

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 ass, hopefully it is kicking cancer's ass!!!

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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's picture
Tethys41
Posts: 1053
Joined: Sep 2010

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
Posts: 581
Joined: Apr 2010

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
Posts: 22
Joined: Jul 2010

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's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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's picture
Shell bug
Posts: 68
Joined: Nov 2011

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's picture
ConnieSW
Posts: 539
Joined: Jun 2012

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's picture
Sisters three
Posts: 149
Joined: Nov 2012

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

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
Posts: 97
Joined: Sep 2012

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's picture
Ro10
Posts: 1361
Joined: Jan 2009

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's picture
Double Whammy
Posts: 2267
Joined: Jun 2010

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

laura25's picture
laura25
Posts: 157
Joined: Mar 2011

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!

Cindy Bear
Posts: 560
Joined: Jul 2009

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
Posts: 93
Joined: Dec 2012

...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"

beila
Posts: 97
Joined: Sep 2012

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's picture
Ro10
Posts: 1361
Joined: Jan 2009

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
Posts: 97
Joined: Sep 2012

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

Ro10's picture
Ro10
Posts: 1361
Joined: Jan 2009

Hope you enjoyed your soup. Nothing like homemade soup, and knowing that someone cares about you.

I too found out that the stemetil was the same as compazine. I was disappointed to not have another drug to try for the nausea. I have taken Zantac at times. I already take Prilosec daily.

I hope you get good results from your CAT scan. Like you said there are other drugs to try if the Doxil, Avastin are not working. My doctor mentioned several drugs to try if the taxol/cisplatin stops working for me. Hopefully you will find a combination that works for you. In addition to the ones you mentioned my doctor also mentioned cytoxan as a choice.

From the beginning of my diagnosis in Jan 09 my doctor told me my stage 3-C UPSC could be treated like a chronic disease. So I have always looked at it that way. That is why I expect to get a recurrence and I expect to go back on chemo. I am just thankful that I can still take the gold standard drugs and they are still working for me.

Hope you are not as fatigued with this round of chemo. In peace and caring.

beila
Posts: 97
Joined: Sep 2012

LOVE THAT "CHRONIC DISEASE" TALK!!

Feel so much better...gotta get that ingrained in my brain
Wish I had your doctor
My 1st one was entirely negative & cold
The one I have now is nice, but knows I dont want to hear anything negative, but never says anything posititive either

I am in bed fatigued, but if this is the price to pay for a chemo being effective, NO PROBLEM!!
I know it is temporary

I just set up a short term goal
Just bought a slinky Victorias Secret sweater-dress.....and my goal is to wear it a week from this Saturday to my athletic club...should be feeling better by then.
I will go with my friend Robert....another MD cancer-beater (I hate the word "survivor"....he has done much more than survive! ) and his girlfriend .....we will have a swim (my very best therapy, but impossible during this severe fatigue) and then a delicious holiday dinner with me decked out in my new dress!

Beila

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

I found out that black cherries, eating about 12 a day kept me from taking ibuprophen every single day. I discovered this by accident and then found out there is scientific fact behind it. When they aren't in season I buy frozen from SAMs club or concentrated cherrie juice from the health food store. Once again food can be medicine. It doesn't cure arthritis but it helps with the pain!!!!!!!

Cancer is a chronic disease as well as arthritis is sooo maybe as a group we can start some of our own research. I don't have chemo issues or anything like that so I can't test cherries on that pain but maybe some of our googling can be for our symptoms and look and dig for info that maybe you haven't come across. I have heard of papaya for indigestion but I use to have a huge problem with indigestion until I cut out a lot of carbs. there another natural suggestion. Now indigestion caused by chemo maybe we need to start digging for that and a natural energy booster. I know cancer eats sugar everyone says but if a remedy is a fruit that makes pain go away is it bad? or is it good?

Can we start doing detective work? I wonder if cherries would help chemo bone pain? My arthritis was soooo bad I had to take at least. 4 ibuprofens
Every day, now none due to cherries. Things that make you go mmmmmmmmm.

Anyone having an end of the world party Friday? I may try to have one at the hospital in my husbands room!!!!
Hopefully you all know about the Mayan Calendar thing.....don't want people to think I'm nuts! Well not you people anyway!

plantlady2012
Posts: 49
Joined: Dec 2012

Here is a link to a very brief abstract about cherries and cancer:

http://www.ncbi.nlm.nih.gov/pubmed/21229414

I also remember cherries being mentioned in the book Anti-Cancer. There are actually several articles about cherries pertaining to cancer in the pubmed database.

plantlady2012
Posts: 49
Joined: Dec 2012

An End of the World party! That sounds like fun! Wish I had thought of it!

debrajo's picture
debrajo
Posts: 732
Joined: Sep 2011

Don't know if this would apply to you or help, but at M D Anderson they gave me both Zofran and comprozine to take TOGETHER. I only took this combo the first two chemo treatments, and then never took either again. They even gave the two together in the treatment center right before a chemo. Best, debrajo

beila
Posts: 97
Joined: Sep 2012

Ro10

Are you taking compazine 10mg every 6 hours if needed?
That is what they have prescribed for me, and I find it works.
I also find chewing gum takes the last little edge off....also ginger

Want to find those black cherries...I love cherries....Wonder where they might import them from to bring them to Toronto in winter!

Beila

plantlady2012
Posts: 49
Joined: Dec 2012

We all know the fear you speak of. I, too, find it comforting that there are so many options out there! I am also looking into alternative and complimentary therapies.

I have even had some false alarms on a scan, like one that showed the lymph nodes had shrunk quite a bit, BUT there was a hot spot on a hip bone! We had to do a bone scan, and it turned out to be nothing.

Keep telling yourself, you have lots of good treatment options! Because, you do!

plantlady2012
Posts: 49
Joined: Dec 2012

For the record, Beila, I appreciated your frank encouragement very much! I am not currently having any difficulties, but I worry about it. You advice and the example of recovery you gave have been helpful to bolster me, emotionally!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi everyone,

Good discussion. Yes, we do have a chronic disease. My doc told me that from beginning so I had no expectations of a cure - though sure think that would be an awesome thing!!! Those episodes of normalcy between treatments are so wonderful - the prize like Beila says.

Well, I got my lab results and am planning to get 4th Doxil tomorrow. Even though ca125 actually up 10% my doc says it's stable and a go for chemo. I anxiously look forward to getting my labs and scan in Jan to see what's going on. These times can be nail biters.

Beila, my doc keeps saying we have many treatment options we have not used. So think positively about your situation. Is there any chance of you getting an assay? Wonder how much this would be and if worth it for you to avoid unnecessary treatments. Just something to think about. Yes, I do take Vit D3 (liquid). I also get sun here in FL (lucky me) and I continue to walk daily thanks to my walking buddy - I have accountability to her daily. CoQ10 does not seem to affect my stomach.

I think the new antidepressant is helping my mood and energy level - remeron. And the ativan is helping sleep. So all working together is good.

Food is definitely medicine. There are innumerable links here if you search. Lots of good suggestions. I'm glad the cherries are helping you. Tart cherry juice is supposed to be a superfood against cancer. Watch if you buy juices since there can be lots of sugar added. I wonder if that just takes the benefit away since cancer loves sugar so much.

Need to share something I learned from pharmacist. When buying supplements buy brand that has USP stamped on label. This certifies that it has ingredients it says since the supplement industry is unregulated. I looked at mine and only 2 of my jars had this on the label.

I've been also drinking organic vegan protein shakes. Think it's helping energy levels.

Well I have to start my chilling routine for hands and feet today and will continue with doxil until it stops working. I sure look forward to a drop in CA125 and hope that's a realistic expectation.

Have the best day today, friends. Hugs to all, Mary Ann

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