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chemo for the rest of life

JackieA
Posts: 150
Joined: Mar 2011

Is there anyone here who has to have chemo for the rest of your life? Any stories? My husband has stage 4 breast with mets to all bones. We have been on chemo since 2009 with no breaks. Every 21 days. I have watch the disease change him physically. He was 41 when he had a reocurrence, now he looks like an eighty year old man and is on a walker.I just want to know if this is normal? will he ever come off?

roseann4
Posts: 994
Joined: Sep 2009

With stage 4 they treat it as a chronic disease and try whatever they can to stop the progression. There are many sisters who can give you better information. I just wanted to let you know that I read your message and admire what you are doing for your husband.

Roseann

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

I am so sorry Jackie.. Just want you to know that I am praying for your husband and for you.

Sue :(

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

Dear Jackie, I was diagnoised with Stage 3 breast cancer in Seotember 2007.I had a left breast mascetomy,radiation for 2 months and chemo of Taxotier & Cytoxin for 6 months. Then I was put on Tamoxifen for the next 5 years. In January 2011, I was diagnoised with bone metastisis. I had 3 weeks of radiation & my oncoligest changed my harmone treatment to Famera. I have also had a monthly infusion of Zomteta since January. Because of the bone mets, I was forced to retire from work and I also use a walker to get around with,too.

I am not on chemo right now,but my oncoligest says that that is still an option. I'm not sure why your husband is on chemo for life, but I'll ask my oncoligest on Nov. 3rd when I see her.I'm very sorry that your husband is going through this because it is not fun for any of us, especilly for the caregivers. I know it is not easy for you to watch him go through this because you care for him so much, it hurts you also because you fell so helpless to do anything to ease his pain. Just being there IS enough! I hope this helps and if he needs to talk,I'll be here.

Sincerely,Robert

camul's picture
camul
Posts: 2097
Joined: Dec 2010

I thought I was on chemo for life, but after 9 months of chemo 3x a month, my onco decided it was time to take a break. I was very hesitant and questioned this as I figured it was the only thing keeping me here. But now I have been off for 6 weeks and I am liking the break. On my last appointment, chemo wasn't mentioned which makes me wonder... I will have scans in December and will make a determination at that time.

Honestly, now that I am not on chemo I am realizing how much of that 9 months were lost. I am thinking quality over quantity. If I just didn't get so dang sick and worn down from the chemo. I just wish there was not so much bone pain. It is now keeping me up at night! It is in almost every bone, but the spine, tailbone and ribs are the most painful.

I am still getting Xgeva shot once a month for the bones and I am on Evista to block the Estrogen. I take Tylenol 3 for pain (sometimes I will take an oxy when it gets unbearable), and can't sleep without Atavan. So life is still not perfect. I am not in a walker, but use my electric chair when I have to walk any distance, and if I do go down I cant get back up as the cancer has wiped out any strength in my legs and back.

So, chemo for life is to keep the cancer stable! Yes the chemo ages our bodies, but I will keep up the hope that the chemo will keep me stable enough to be here when they do find something that will make it chronic rather than terminal.

I will keep you both in my prayers.

survivorbc09
Posts: 4378
Joined: Jun 2009

Jackie, just to let you know that you and your husband are in my prayers. Please keep posting to update us as to how you both are doing.

Hugs,

Jan

JackieA
Posts: 150
Joined: Mar 2011

I don't know where I read this, but I know it was here. You asked me something about hormone. No he is not able to do the hormonal drugs such as tamoxiphen...or chemo pill. He has been told that he doesn't respond. I don't know how much longer he will be able to do halaven. For a while, almost six months, he was doing great. Suddenly he is losing the usage of his hands, and he is becoming weaker in his legs- already on the walker. Needs it to keep from falling. This week is the roughest one in a while.. We asked for a break, and the dr said no, its keeping him alive. I guess I am so concerned about how long will his body be able to take it, when it is already fragile. Very. He gets neupogen and neulasta with every treatment. He is an anemic. Like I said...he gets xgeva for bone, used to get zometa. Also gets Avastin. Can't think of what else.

Thank you so kindly for your encouragement and allowing us to share. The good thing about this is that I don't feel alone when there are people we can talk to. Thank you.

New Flower
Posts: 4065
Joined: Aug 2009

I wish your doctor could give your husband a break, so both can enjoy being around or take a little vacation and see interesting places.
I would seek a second opinion and also look at palliative care to help with side effects and quality of life issues.
Sending positive thoughts and prayers.

debi.18's picture
debi.18
Posts: 849
Joined: Jun 2011

Jackie, but just wanted to let you know you and your husband are in my thoughts and prayers.

I so hope and pray for a cure soon so no one has to endure this!

Hugs,
Debi

Lynn Smith
Posts: 1265
Joined: Mar 2011

Sorry to hear about your husband being on chemo for the rest of his life. Maybe eventually he will be in remission and they can stop but now they must see no future unless things get better.If they were to stop and it came back soon after they made a mistake. They don't want to take chances.

I read of a situation not far from me.A lady was dx with breast cancer and then 5 months later her husband was dx with bc.She is still living and he passed away in July after 1 1/2 years. Cancer in men is harder to detect. Usually when a man is dx it is in the late stages.The warning for this man was his steering wheel hurt to put on.Then he went to the doctor.

I didn't need chemo.Non invasive localized bc but those who get it are living longer.My friend is a 16 year survivor and doing great.She had chemo for over a year. She was Stage 3. Had a lumpectomy which concerned me but she is fine.

People are living longer. Wishing the best for you and your husband.

Lynn Smith

JackieA
Posts: 150
Joined: Mar 2011

Thank you so much for your concern and input. I am thankful that my disease has slowed tremendously. HOwever he has lost over a hundred pounds and is on a walker. He can not walk up stairs and without his walker. Currently he is taking Xgeva for bones, Halaven, Avastin, and neulasta and neupogen. All of these are powerful drugs. I wonder if these drugs are making him look like this old person(excuse me for elderly). He is hoarse all the time. At one time he was having so much trouble breathing. He is on dilaudid and the fentyl patch 75 mg. Does anyone know about that? His neurothapy is so severe. He also takes gaberpentin. He had mets at the bottom of his skull pressing on a trigeminal nerve. He has had radiation in both hips, on his skull- and his entire spine was engulfed with mets. He had it in his sternum and his ribs---Has had a masectomy...

When I read over all of this, I am still grateful, because at one time he could not get out of pain. He went to the hospital in May to bring his pain under control, and when they did, he is much tolerable. We went through bouts of him falling in the middle of anyplace. He finally surrendered and took the walker. He does not drive but he wants to so bad.

THANK YOU FOR your encouraging words!

catowner's picture
catowner
Posts: 50
Joined: Sep 2011

I am so sorry to hear about your husband and yourself. I hope and pray the cure will come soon. I will keep you two in my prayers. There are many people out there who are praying for all of us. Hugs, Debbie

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

The least we can do Jackie is to send encouraging words to you and your husband. My heart just breaks at reading what you've both gone thru.

Please keep coming back and posting.

Sue :(

merianne
Posts: 4
Joined: Oct 2011

Jackie, I can understand how worried you must be for your husband. I know the feeling of not feeling like you can help. My mother had breast cancer in her forties. I had my first bout in 92, then another in 2002 and now in 2011. Mine have been exactly nine years apart. I have bone metastisis too, in my pelvic bone and others are right when they say they simply try to stave it off. In my case I am lucky in that Femara is working for me as well as Zometa. I eventually will probably be on a walker as well and that is the best idea to not fall. If he does, then he will end up with broken bones and that would not be a good thing. If you are having problems with self help issues for him, tell your doctor. Most insurance plans will pay for a nurse to come in or even a helper to give you a break. Your sanity will help him deal with what he is going through. Men are very sensitive about that. My dad was very upset with forgetting things when he had alzeimers and my mom took care of him but when she got pancreatic cancer, we moved both of them into care. My mom into hospice because it was necessary and my dad to a wonderful home that had lots of caring people and hospice as well. At some time, you and your husband will have to make the decision of quality of life issues over treatment. I didn't want to talk about that but my brother being the doctor that he is, told me that. There is always hope and healing but within that is also being realistic. Do the things now so that if things get worse, they are already done. Get a power of attorney, a living will, a will or a trust set up and other arrangements. Most of all, keep some time to yourself. I know that it seems like you are not there for him at those times but it is important for you to take care of you. I feel during my treatment that I have gotten more frail and I watch what I do. You might want to talk to the doctor if he is going upstairs to see if modifications need to be made. Most of all, I pray that you don't take offense at me speaking so bluntly but I'm stage four as well and they tell me they will stave it off as long as they can. I hope that he is taking the pain medication that they give him. Men are stubborn that way, but as my brother, who like I said is a doctor tells me that it takes less medicine if you keep it constant than if you have to take a huge dose because it's gotten to painful. Ask your doctor about help at home. I'm sure he will be glad to help. Love, Merianne

JackieA
Posts: 150
Joined: Mar 2011

Hi, Thanks for your input. Actually, he can not walk upstairs. He has been upstairs once since May. My husband used to fall all the time. Thank God he did not break any bones- I know about 30 times in 6 months. He has fallen on our floor, dr. office, parking lot, stores, early mornings, middle of day. Standing up and his legs goes out. I think this is from the mets in his spine. One of his arms/hands looks like someone who is paralyzed-now he is losing the usage of the other one. I think his body has gotten use to the meds he is taking. Gabepentin, dilaudid, and fentanyl patches. He is very short of breath now. Anyway, I am going to call the dr before our next appointment. I told him last night that I was not going to allow him to just sit around and be miserable. He tires out just fixing a plate. Now, he had been that way before...before he started Halaven. For the past 6 months he has done well on halaven. But this last month, things are changing and it is one rollercoaster ride!

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Just to let you Jackie know that I am thinking and praying for you and your husband and for you also Robert.

There is always strength in prayers!

Hugs,

Megan

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Alexis F
Posts: 3604
Joined: May 2009

Also sending lots of prayers and big hugs to you and your husband.

Hugs, Lex

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butterflylvr
Posts: 943
Joined: Apr 2011

I too want to send along my love and support to both you and your husband. We have some loving pink brothers here that can relate to what your husband is going through. He is blessed to have such a loving wife by his side, I feel equally as blessed having my husband David. Stay strong for him... and we are here for you.

Hugs,
Lorrie

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

I've never had chemo Jackie. I just want to tell you that I am praying for your husband and ofcourse for you also.

Big hugs!

JackieA
Posts: 150
Joined: Mar 2011

Thank you for the love....

JackieA
Posts: 150
Joined: Mar 2011

Thank you for the love....

VickiSam's picture
VickiSam
Posts: 8320
Joined: Aug 2009

my heart aches for you two. Prayers of hope and strength.

Camul and ManwithaMission offer up the best advise I've ever read, or research. I hope this provides some type of comfort to you and your hubby.

Best of luck and positive thoughts.

Vicki Sam

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

This is so sad and I am so sorry Jackie. Prayers for you and your husband.

Hugs, Kylez

JackieA
Posts: 150
Joined: Mar 2011

I want to thank you for your encouraging words. We will continue to hope for the best and live! each day. I know that it is a fight, but each day is a blessing. Thank you.

Alexis F's picture
Alexis F
Posts: 3604
Joined: May 2009

Each day is a blessing Jackie and never give up, there is always hope!

Hugs and lots of prayers to you and your family,

Lex

susie09's picture
susie09
Posts: 2933
Joined: Jul 2009

How are you and your husband doing Jackie? I hope that you see all of the support and prayers that we are sending to the both of you!

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

There are warriors of all kinds here. I guess the best thing to do is to listen to your husband on his level of tolerance for this extended length of chemo treatment regimen. The doctor may eventually suggest a break at some point in time. as you heard another here speak of. The most important questions you and your husband should ask are these; How well is this treatment regimen tolerated? Is there a point where we can give more time between treatments? Is there a chance for a chemo treatment holiday? At present I can't think of any other questions but if I have overlooked an important one I am sure another will chime in. Just decide these matters carefully, taking your husbands thoughts and feelings as the top matter for consideration.

You and hubby will definately be on my prayer list.

survivorbc09
Posts: 4378
Joined: Jun 2009

Sending my best wishes and prayers for you Jackie and your husband.

Hugs, Jan

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

Dear JackieA, I talked to my oncoligist today about your husband's chemo treatments and she confermed that he will be on some kind of chemo the rest of his life. She wanted to know if they had given your husband Tamoxefin or Aromatase Inhibitors? My onc said that the Xgeva that your husband is taking is for people that don't respond to harmone treatments. Is his cancer Harmone Negitive Reseptive?

I hope & pray that you and your husband get through this tough time with as few problems as you both can manage. If he feels like talking to someone that is going through the same thing as him, just have him(or you) private message me here.

When I was diagnoised Stage-3 back in 2007, I thought that I would stay that way forever. Today I found out that I am also Stage-4 because of the bone mets. Who knew that you could graduate to new levels. My onc has me on a Aromatase inhibitor(Famera) right now, plus the Zometa infusions once a month for bone strength. I did not ask her if I would be on these for the rest of my life? Although,I intend to do whatever it takes to keep LIVING! "The Rest Of My Life" could be a few weeks, a few months or whatever. The optimal word here is "LIFE"! I keep telling my wife that we all have to go sometime. When it's my turn,just have me Mummified & stand me in the corner. HA! I don't think she will do it,though. She said that she's not going to want to dust something else. HA! Ha! Ha!

(((Hugs))) Robert

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

Jackie, just wanted you to know you and your husband are in my prayers.

marge

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

I am sorry Robert to read of your news. I am sending prayers and lots of support to you!

Hugs, Kylez

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

Dear Kylez, I sincerely appreciate your prayers & support for me and others on this board. I just never realized before that your degree status would increase along with your decreasing condition! Who'da thought.(Slapping my forehead.) I guess that my Chemo brain and old age have finally set in,huh. LOL!!

Hugs back at ya, Robert

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

You will always have the prayers and support of all of us Robert! You can count on that!

Hugs, Kylez

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

You are one of us Robert, so, don't forget that! We support and encourage you also every step of the way!

Sue :)

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Praying for you Robert!

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

I cannot imagine having chemo for the rest of my life. I am so very sorry Jackie to read this about your husband. My thoughts and prayers to you two.

♥ Kristin ♥

JackieA
Posts: 150
Joined: Mar 2011

I want to thank you for asking the dr about his situation. Well, he can not do hormone meds. He is stage iv. The cancer mestasized to every bone in his body, and his entire spine was engulfed with mets. Recently it went to his knee. He has had radiation to skull (tumor at base), to hips 2 times. First round in 2005 he had masectomy. If you can answer this, I would appreciate it...He has several cases of pleural effusion. In May we were told that he had slow growing cancer in lung (the dr. thought). Tumor in nodule pressing against his trachea- cause of shortness of breath. It has come back--the shortness of breath. I am frustrated because when my husband sees his dr he pretends that all is well. He never tells him about how he feels. He takes his meds just before he sees the dr and they perk him up...laughs and talks with the dr...then they check his blood to see if his counts are okay...I believe that the neulasta and the neupogen is masking it, but I don't know...and that's it. he has not had scans since May. We were told that it was stable..but mixed signals because he went in the hospital in May and was told prior info I just shared. To me, just to me, it seems like he is declining, but my husband did request not to hear any bad news. The dr, did share with me in May that we were buying time. Does this make sense. Sorry to put this on you. If you don't feel comfortable, I truly understand.

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

First off, would you tell me your husbands first name? Could you also tell us where you are living? We have Pink Ladies all over the country, even in Canada. Maybe some here might live close to you.

To try to answer you question, yes, it sounds like you are getting mixed signals. Maybe your husbands medications are masking his counts. But then again, maybe they are not. Due to his condition, I don't think he could be hiding anything from his doctors. If your husband won't talk about his feeling, maybe you should talk to he doctor.Some of the ladies on this board have mentioned Palliative Care. I don't really know what this is, but maybe it's like hospice. Have you checked into that, they can be very helpful to you with him at home.

Would you want to know about your husbands prognosis, or can his doctors even tell you anything, since your husband requested not to hear any bad news. That's probably why they talk and joke with him at his visits. His doctor told you that your husband was stable, yet you don't understand why he hasn't had any scams since May. His doctor told you then that they were just buying time. Maybe that is all they can do.

It is always difficult to watch someone you love and care for deteriorate right in front of you. I am sure you are very frustrated because you can't ease his pain. I wish I had the words to help you and your husband through this difficult time. My heart is breaking for you as I write this, but I am very glad you have reached out to me and all the ladies on this board. I am hear to help you carry your burdens, I have very broad shoulders.

Please continue to come back on this sight and inform us as to you and your husbands condition. All our prayers are with you and him, Robert

JackieA
Posts: 150
Joined: Mar 2011

You are right about the mixed signals. We were told he couldn't come off the halaven because it is keeping him alive. Okay. We were told his blood work looks great 2 treatments ago, so my husband asked what does this bloodwork tell us. We were told it is just a guide (lack of word) that tells them how his blood is responding to treatment. It does not tell us anything about the cancer--does that make sense? So we wondered okay, what does? We were told that test was unreliable, and they dont really look at that. So the next question my husband had was, how do you tell how the cancer is doing...the response was, by the way you feel until we do a scan, which is coming in a few weeks. Well, my issue is that lately he has been horrible. He has not been totally honest with the dr. So tonight and for the past 2 weeks he has had chest pain and it hurts to cough. He has gotten weaker and weaker. He takes the happy pills before going to the dr. and put on a good front. Doesn't tell about the pain or anything. weight averages around 158 or so. He has had a lot of fluid lately. I read somewhere Halaven does that. I told the dr back in May, I just want to know the truth about my husband's condition. It has been a rollercoaster because I feel in the dark. I see other cancer patients looking well gaining weight, but my husband has declined significantly since last year. I love him sooo much, but I am a realist...hopeful, but all things considered...realist. By the way, we are from Cordova, TN. Husband is Kip. Thank you so much for your thoughts, for sharing. I appreciate all of the acknowledgment...thanks a million.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Prayers for you and Kip!

Hugs, Leeza

ManWithaMission's picture
ManWithaMission
Posts: 497
Joined: Sep 2008

I have been thinking about you and your husband,Kip. I am still working on a reply for you, please be patient with me. Thanks. Robert

jnl's picture
jnl
Posts: 3873
Joined: May 2009

How are you doing Robert?

Leeza

DianeBC's picture
DianeBC
Posts: 3888
Joined: Jun 2009

Just to let you know Jackie that you and your husband are in my thoughts and in my prayers.

Hugs, Diane

disneyfan2008
Posts: 5435
Joined: Oct 2010

I don't have any advice..just sending warm thoughts to both of you..

Denise

ginnyl's picture
ginnyl
Posts: 38
Joined: Jan 2004

i have IBC cancer with mets to the bobes. I have been stage four since the begining.
. I have had mutiple chemes .radiation.amd surgery and even a recurrunce in the mist of that/ The road been hard ans long but due to faith and support i made it. I am going on over 11 years and been on chemo alll that time .What i take now is herceptin and its not that bad at all. If i do have a problem its he day i take it and its like getting over a horrible drunkso i wont ever be an alchoholic. i go every three weeks for herceptin and twice a year for zometa and the zzomta causes bone pain for a day or two. i am 63 years old and i shake quiet a bit and i have a problem with the falling and they dx. that chemotoxcity to that inner ear. was told to take it easy getting up. and to use a canr at night but so for i havent. im sending prayers and hugs and hopr it goes for u as well as it does me.your friemd ginnyl

Ritzy's picture
Ritzy
Posts: 4384
Joined: Aug 2009

Ginnyl, I am sending hugs, hope, support and prayers to you too!

Sue :)

skipper54's picture
skipper54
Posts: 936
Joined: Feb 2011

And will keep you in prayers. Peace

JackieA
Posts: 150
Joined: Mar 2011

Thank you for your responses...Everyone. I am humbled and grateful.

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Please keep posting so we know how you and Kip are doing.

Prayers and best wishes,

Angie

JackieA
Posts: 150
Joined: Mar 2011

Thank you for your responses...Everyone. I am humbled and grateful.

JackieA
Posts: 150
Joined: Mar 2011

Thank you for your responses...Everyone. I am humbled and grateful.

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