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60 Mg cabo is brutal and we are running out of options

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

Hi.

I haven't been very active on here.  I lurk from time to time.  My husband was taking 40MG cabo.  They determined it wasn't enough.  60MG is brutal on his health and well-being.  He now rotates them 40mg one day 60 mg the next.  He just took a week off both after a trip to the emergency room.  We had scans recently and all tumors are stable so it is still working.  We have done Votrient and Inlyta.  He has was diagnosed with "Stage 4 advanced and aggressive" in 2014.  So he has been fighting for 4 years.  For the most part he has done real well those 4 years.  The Oncologist told us The only 2 options left after Cabo is Immunitherapy and Clinical Trails.  Immunitherapy will attack his rheumatoid arthritis and only has a 20% success rate.  Most trials he is ineligible for because of his rheumatoid arthritis and high blood pressure.  I think because of all the meds he is on, he either doesn't understand or he is checked out and in denial.  He looks at me when the doctor talks to see my reaction.  I'm scared and putting on a brave face most of the time.  I broke down a little after the last Onc appointment.  I've talked to the Onc about his quality of life on the cabo and he pretty much says it is the best option right now unless it stops working.  Its strange - the treatment is both killing him and keeping him alive.  He is loosing a LOT of weight.  Onc says that comes with the territory.  I'm just worried and scared and I know yall understand and I am not alone.  I often wonder if I should take off more time from work to spend with him.  thanks for listening to my rambling. 

todd121's picture
todd121
Posts: 1422
Joined: Dec 2012

I wouldn't want to begin to give you advice. All I wanted to say is that my heart goes out to you and your husband and I'm sending out wishes of comfort, peace and hopefully some stabilization in his health.

I'm sorry you're both going through this. It just sucks. There's just no other way to say it.

Wish I could offer something more helpful.

Hugs,

Todd

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

Thank you Todd.  That means a lot.  I know when I come here I am not alone.  Hugs right back at ya!!!

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i have been where you were and yes it’s very tough

tough for you,

tough for him

tough on both of you

i worked through my husbands illness as that is what he wanted (stubborn was his middle name)

it helped as we could pretend everything was normal

my friends told me to take time off and in hindsight I wish I had

you don’t have to do permanent but can you take some sick or unpaid time ... a month say.. on a occasional basis

sorry I cant talk about the treatments but I am so happy he is doing well and pray it continues

at the minute you don’t need to think about anything else.. just focus on keeping him going

hugs

Annie

 

 

 

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

Annie,

Thank you for your post.   I guess with all the positivity of this Forum Board, and how well my husband seems most days, I kind of lull myself into denial.  Then the Onc visit slaps me into reality.  I feel scared.  I don't know how long we have.  It helps to talk to others who are going through this and have been through it.  I really appreciate your response.  I'm sorry for the struggle you have! Hugs to you!

Allochka's picture
Allochka
Posts: 847
Joined: Nov 2014

I am so sorry to hear about it... My husband is not Stage 4, so I can't even imagine how hard it is for you and Annie. But I worry about my husband anyway.

I just want to say how brave and strong you all are!

Perhaps "denial" (as you call it, however I'm not sure you are in denial, I think you just are full of hope)  is not the worst thing as long as you continue to be vigilant and do all the necessary treatments. Noone has a set expiry date, and your husband is stable, not declining!

 

Hugs,

Alla

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

Alla,

Thank you for your response.  You are right.  Today my husband is stable.  All we all really have is today.  It is a challenge to live in the present; not looking back or foward, just being thankful for today.  :)

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

I took Cabo 60 mg for a month, now about to finish a month on 40 mgs. It's a lot more manageable on 40, but towards the end of 60's I was finding my way to easing the stomach issues somewhat. It is quite brutal. I don't know yet if it's working for me or not. Just scheduled next scan for the 18th.

I would agree with those who said to take some time off as you can to spend with him. We never know. Mine is stage 3c and quite aggressive also. pRCC. type II.

I often ponder the same thing as you - the same drug that can keep the cancer at bay tends to be so hard on us at the same time. I'm a lot newer in the journey so still have a lot to learn and more trials to face. 

Hang in there and don't be a stranger. Come and talk anytime at all!

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

JoeyZ

Please let me know how specificially you to eased your stomach issued somewhat.  Your suggestions could help him tolerate it.  Thank you for replying to my thread.  Hugs to you!!!  Let us know how your scan goes on the 18th!

AnnisaP

As far as the time off, it is a balance.  I take some unpaid time.  Most of my vacation is to take him to appointments.  I'm not complaining.  I love hanging out with him.  I would rather take a vacation with him at MD Anderson than him being gone and me on vacation without him.  The main thing is I am trying to save some time for if he declines.  I want to be able to afford to stay home with him and be the one to care for him.  The tragedy is some people don't decline, they just go.  But maybe that is not the tragedy!  Sorry if this is too real of a conversation for you :(  I have a week off in July where we are going glamping :)  I also rather take time off when the kids are in school and we can have a staycation :) :) :)  Thank you for replying to my post.  Prayers to you!!!

 

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

 OOPS. Now I see you were replying to Annisa, and you are not her....Oh, well...Here's the info!

 

The stomach issues got a lot better once I started taking Zofran 8 mg every 12 hours, Zantac 150 mg every 12 hours and Pepto Bismol, as needed. Also Immodium, if needed. The decision to go from 60 mg to 40 mg was already made and the meds ordered when I started getting some better relief. Now I'm almost to month 2 on the 40's. I kind of wish I'd stayed on the 60's. But after a lot of pondering, I realize QOL is much better on 40's and will find out Monday how it has all worked out.

As you can see, I didn't do anything too out of the ordinary or drastic. I found the more things I did preemptively, the better it worked. I only take Immodium IF needed. Also the Pepto. I religiously do the other two every day. I realize we're all different, but this is what my particular bag of tricks is for the time being, subject to change on a moment's notice!

I hope any of this helps in some small way. I see where someone on here (I forget who) - their doctor upped their Zantac use to 300 mg twice a day. BTW, I did all my changes with my Oncologist's help and blessing.

I also had to give up drinking fruit juice, which I loved. It has way too much sugars in it, anyway.

All the best to you both and all the forum peers!

 

*** EDITED to add: I take the Zofran in evenings at least 1/2 hour before taking the Cabo. That made a ton of difference.***

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Hi and thank you for reaching out. We all are here for you. I might not have much advice, but remember.....live for today. Enjoy every minute you have with your husband. If that means missing work or doing something else, cherish each day with him and live in the moment. All the best xoxo

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

THanks JoeyZ!!!  I think my husband has those 2 meds but I will check with him.  He definately doesn't have Pepto Bismol.  I will buy that!  Imodium is a daily staple and part of his food triangle :)

I was actually replying to both of you but I must have hit reply on your message.  I don't always understand how these boards work :)

 

JoeyZ's picture
JoeyZ
Posts: 191
Joined: Mar 2018

You are welcome and I hope it helps. Some days I felt it helped a lot, and others a little less. But overall I felt it was better. I really wanted to stay on the 60 mgs. Depending on my scan coming on Monday, we'll see if I go back to it. Good luck to you and hubby. Hang in there. Keep in touch and let us know how it goes.

damatken
Posts: 16
Joined: Dec 2014

My sweet husband has battled for 4 years as well.  He is doing immunetherapy and radiation.  At this point, he has RCC in his lung, his T6, T12 and sacrum.  We are working hard with the therapy in hopes it will keep the tumors stable if not shrink them.   It is a daily battle.  He is in the hospital at this point and I am maintaining the home, our children and running back and forth to the hospital.  I am tired and overwhelmed.  Cabo is in the oncologists back pocket if we need to begin this treatment.  I guess I need to just be thankful for the time we have been given.  

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

Damatken

Please take good care of yourself. I have started meditating to help teach me to live in the present. Just 5 to 10 minutes in my closet before I leave the house. I will pray for yall. I'm sending positive thoughts your way. Keep posting here to let us know how yall are.

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