Cancer Support Group

Hi everyone,

 

Does anyone else out there have cancer, or has had cancer and is in remission, and is also dealing with benzodiazapine withdrawal? I finished my chemo for ovarian cancer last November and am in remission, but the people at the cancer center put me on Ativan for the anxiety without explaining the ramifications. So now I am tapering and feeling like crap most of the time. I am beyond angry about having to go through withdrawal now after enduring surgery and six months of chemo, and feeling very bummed out about the whole situation.

 

I doubt there are are many cancer buddies out there, but if there are a few, I'd love to hear from you and maybe we can help support each other. 

Me!  I just got diagnosed with breast cancer 2 weeks ago during the middle of my Valium taper.  I was put on Xanax back in October during an unrelated health scare and got hooked really quickly, had bad interdose withdrawals and switched to Valium to help taper off.  I started at 15 mg at the beginning of the year and am down to 10.5 mg.  I cut to 10.5 mg 3 days before getting my diagnosis.  I have felt pretty much like crap this whole taper and am very sensitive.  So now I'm facing cancer in the middle of benzo withdrawal.  Lovely.  I have surgery scheduled for 6/1, bilateral mastectomy and reconstructions and based on pathology the oncologist will decide on chemo and or radiation.  I have no idea how all this will affect my taper, but hate the thought of losing all the ground I've gained.  For now I'm holding until after surgery.  I have met Tryingtobepositive on this boards who is a survivor of lymphoma and became dependent on Ativan during chemo and is now in remission and trying to taper off.

Hello Hope, happy to meet you! We sure got hit with a double whammy, didn't we? We expect life to be fair, but there are no promises. But this just seems exceptionally unfair.

 

I think it's a good idea for you to hold your taper while undergoing treatment, though I can understand your frustration at having this delay when you were making good progress. But chemo is challenging, adding tapering to that would be pretty crappy. I would take this time before your surgeries to stabilize and feel as good as you can going in. Perhaps your doctor will decide you don't need chemo. Fingers crossed for that outcome. 

Me. 

Dx with breast cancer in my 30s. Given Ativan during chemo for Nausea. Stopped Ativan cold turkey after 9 months of use bc my nausea was better and I was in remission. Became horribly sick, hospitalized with severe tachycardia. I figured out it was Ativan withdrawal. Tried to cross to Valium for slow taper but Valium was a disaster. So now I'm on two benzos. This has been far worse than the 12 months of cancer treatment. Terrified the stress this is causing my body will cause my cancer to reoccur.

Hi Colette, I sure understand your fear and frustration. I also was put on Ativan while going through chemo, and was not told anything about how addictive it is and how hard to get off. So now I am tapering - a hell of a way to spend one's precious remission time. I have such fear that my cancer will return before I have completed my taper, and will never have good days again in my life. 

 

And I agree, there are times when benzo withdrawal feels worse than chemo. It's really a terrible process. My faith in doctors is gone.

Me. 

Dx with breast cancer in my 30s. Given Ativan during chemo for Nausea. Stopped Ativan cold turkey after 9 months of use bc my nausea was better and I was in remission. Became horribly sick, hospitalized with severe tachycardia. I figured out it was Ativan withdrawal. Tried to cross to Valium for slow taper but Valium was a disaster. So now I'm on two benzos. This has been far worse than the 12 months of cancer treatment. Terrified the stress this is causing my body will cause my cancer to reoccur.

 

Hi Colette. I'm having surgery this morning for breast cancer and am at  the start of my "cancer journey". I'm in the middle of a taper off Valium which I'm currently holding the dose for surgery. The taper has been pretty awful but I was making progress until my diagnosis. I'm honestly more worried how the surgery and chemo will affect my taper than the cancer itself, so I totally get how much this stinks. And I worry about the stress too. I am 39. You are not the first person I've heard say that the benzo withdrawal is rougher then cancer. Not sure how it will be with both. I'm at least planning to hold this dose and not increase it, and maybe sneak in a few cuts when I can. I started out on Xanax during another health scare but got bad interdose withdrawals and crossed to Valium to taper.

Hope, good luck today with your surgery! I hope that your case is not advanced and you won't need aggressive treatment. Good idea to hold on your taper for now. Your body is undergoing enough stress. Watch out for the hospital and the docs - they will try to get more benzos into you. Question everything they want to give you if you want to minimize your benzo exposure. Looking forward to hearing from you when you're back home and recovering. Best wishes.

Hi,

I came over as promised!

Umm, let's see I guess I'll just give a quick summary of my situation

 

I was diagnosed with NH Lymphoma in October 2015 with complications such as Super Vana Cava Syndrome.  I endured 6 rounds of RCHOP with each round lasting almost 5 full days of continuous chemo through IV.  They took me off of my .25 dose of Klonopin starting my first day in the hospital and put me on Ativan (usually 1.5 mg per day sometimes 2 mg) a ton of prednisone, etc.  I felt ok the first week but after my first round of chemo I was not only very sick from the chemo but started going through what I now believe was withdrawals as the Klonopin was much stronger than the Ativan.  As a matter of fact when I tried to go back on my Klonopin at .25 mg in February after all my chemo was completed, I was SO drugged out from it I had to wait a full 24 hours before going back onto Lorazepam (generic Ativan).  I then tried to switch to Valium/Diazepam and that made me too groggy with just 1 mg although I needed more for my anxiety.  That's when I decided that I didn't want to mess with anymore meds and would try to fully get off of the Lorazepam.  If I still needed meds after that I would deal with that later but was and still am determined to get off this crap.

 

Since February 16th, I have tapered down from 1.5 mg to .375 mg!  I'm hoping to cut down further on Monday June 13th but will see how this week goes first.

 

So that's my story!  I hope all of you are hanging in there

Hi Trying, thanks for stopping by. You really sound like you're doing very well on your taper. I know what you mean about not being sure if it's chemo or benzo ickiness. I first tried to stop taking the ativan in December when I was one month off chemo, and thought that the symptoms were chemo-related. It took me a couple of months to figure out what was going on. The doctors were clueless, of course.

 

In February I started my taper... so I get to continue feeling like crap through the summer, when I was so looking forward to enjoying it. It's difficult to not feel pathetically sorry for myself sometimes.

 

We just have to keep on plugging away.

I just wanted to update here that I had my surgery Wednesday and am recovering at home. They did a bilateral mastectomy with the start of reconstruction (tissue expanders). They

gave me some extra benzo in the OR but it hasn't seemed to affect my taper. I am holding steady on this dose until I further recover. They took out 2 lymph nodes on the left (cancer side) and both tested negative for cancer. The tumor was 3.8 cm and he got good clean margins. I am a stage 2a which is better than we thought. There was evidence of precancer in the other breast so good I went ahead and had that one done too. I was given Lortab, soma, ibuprofen, and Keflex (I have 2 drains) at discharge. I am already off the Lortab as of yesterday as I cannot stand the GI side effects. My pain is tolerable. I am using the Soma and ibuprofen about twice a day. I am hoping to get at least one drain out when I see the plastic surgeon on Friday, both if I'm lucky. The surgeon says I don't need radiation which is awesome news. I will need chemo and have an appt 6/15 with the oncologist to discuss exactly what I will need. I'll have to have a day procedure for port placement. Not sure when I'll be able to get back to tapering again, but for now I am at least at a steady dose!

 

I just wanted to update here that I had my surgery Wednesday and am recovering at home. They did a bilateral mastectomy with the start of reconstruction (tissue expanders). They

gave me some extra benzo in the OR but it hasn't seemed to affect my taper. I am holding steady on this dose until I further recover. They took out 2 lymph nodes on the left (cancer side) and both tested negative for cancer. The tumor was 3.8 cm and he got good clean margins. I am a stage 2a which is better than we thought. There was evidence of precancer in the other breast so good I went ahead and had that one done too. I was given Lortab, soma, ibuprofen, and Keflex (I have 2 drains) at discharge. I am already off the Lortab as of yesterday as I cannot stand the GI side effects. My pain is tolerable. I am using the Soma and ibuprofen about twice a day. I am hoping to get at least one drain out when I see the plastic surgeon on Friday, both if I'm lucky. The surgeon says I don't need radiation which is awesome news. I will need chemo and have an appt 6/15 with the oncologist to discuss exactly what I will need. I'll have to have a day procedure for port placement. Not sure when I'll be able to get back to tapering again, but for now I am at least at a steady dose!

 

Hope you sound amazing!  See you're holding steady at your dose and are working this one step at a time.  So happy things are looking very positive and that the pain is tolerable.  Good luck on Friday

Hi Trying, thanks for stopping by. You really sound like you're doing very well on your taper. I know what you mean about not being sure if it's chemo or benzo ickiness. I first tried to stop taking the ativan in December when I was one month off chemo, and thought that the symptoms were chemo-related. It took me a couple of months to figure out what was going on. The doctors were clueless, of course.

 

In February I started my taper... so I get to continue feeling like crap through the summer, when I was so looking forward to enjoying it. It's difficult to not feel pathetically sorry for myself sometimes.

 

We just have to keep on plugging away.

 

Hey, we started our taper in the same month, how about that?  I know the not knowing what is causing what can get very annoying.  I figure I will know soon enough with some of the symptoms and probably will never know for others.  In the end I just want to feel great.  So that's my goal...my mission; I want to feel amazing for a change!

 

Of course it's hard to not feel sorry for yourself sometimes you just beat cancer!  Now you got even more fighting to do that you shouldn't have to do.  But here's the thing.  From what I've read and heard from others it can take quite some time to heal from chemo.  So it's better to be benzo healing as well than to wait until the chemo effects wear off and then start. 

 

I also just got really pissed off one day and said to myself that no matter how crappy I feel I'm going to have the best summer I can.  I spent almost every holiday in bed either in the hospital or at home.  I literally thought I was going to die!  So I decided that even though It may be really tough at times that I was going to live and do some fun things.  You know what I've already traveled with my family, gone to the zoo, and planned two upcoming parties and it isn't even technically summer yet.

 

So solitude if you feel bad allow yourself that!  Just give yourself a break too and find somethings you enjoy in the process!

 

Hope, so glad to hear your cancer is at an early stage and your lymph nodes are clear. That's very encouraging news. I have a port - it's weird to have a little invader implanted in your chest. I've had mine since last June. It still weirds me out, but I'm pretty used to it at this point. You should give yours a name. Mine is called "Nub", for obvious reasons.

 

Trying, you are so right about working to get on with life and try to have a little fun. Just hard when I feel so crappy. I'm in a wave right now, and today was particularly bad. All I did was lie around feeling ill. Stomach horrible, spacy helium head - ugh! At least I had Netflix and friendly cats to keep me company.

 

Hoping I get some sort of sleep tonight and can get back to work. I took today off, but am trying not to do that too often.

 

Here's to a good day for all of us tomorrow! 

Hope, so glad to hear your cancer is at an early stage and your lymph nodes are clear. That's very encouraging news. I have a port - it's weird to have a little invader implanted in your chest. I've had mine since last June. It still weirds me out, but I'm pretty used to it at this point. You should give yours a name. Mine is called "Nub", for obvious reasons.

 

Trying, you are so right about working to get on with life and try to have a little fun. Just hard when I feel so crappy. I'm in a wave right now, and today was particularly bad. All I did was lie around feeling ill. Stomach horrible, spacy helium head - ugh! At least I had Netflix and friendly cats to keep me company.

 

Hoping I get some sort of sleep tonight and can get back to work. I took today off, but am trying not to do that too often.

 

Here's to a good day for all of us tomorrow! 

 

Y'all have me wondering if I should just keep tapering during chemo since I'm going to feel crappy anyway. I'm going to wait to talk to my oncologist and pdoc, and obviously recover from surgery, but I hate being at this standstill in my taper.  I'm sure once I get started with the process the right path will come to light. Right now it is a black box for me since I'm not even sure what my chemo regimen will be. Just hate wasting all this time!

Hard to answer that. It would be a double whammy of feeling like crap, but crap is crap. Maybe you can get through it. When you start chemo they will probably try to give you Ativan, as it helps with nausea. So be sure to ask what everything is - pill or injection. Zofran is a good alternative med for nausea.

 

 

Hello everyone

I am a 4 yea breast cancer survivor. I had stage 1 breast cancer on the right breast. I didnt need chemo

or radiation so I got lucky on that part. i had a bilateral masectomy where they put tissue expanders in

for six months to make room for Implants.

 

Thank you for everyone's support. Kim

 

Trying, you are so right about working to get on with life and try to have a little fun. Just hard when I feel so crappy. I'm in a wave right now, and today was particularly bad. All I did was lie around feeling ill. Stomach horrible, spacy helium head - ugh! At least I had Netflix and friendly cats to keep me company.

 

Hoping I get some sort of sleep tonight and can get back to work. I took today off, but am trying not to do that too often.

 

Here's to a good day for all of us tomorrow! 

 

Hi Solitudeseeker,

 

Yeah it sure is really hard to have a good time when you're feeling crappy.  I think that I just get so sick of being and feeling sick that if I don't push myself I just might sink into the abyss, if you know what I mean.  I am so in touch with the spacey helium head!  What a wonderful description! 

 

I hope you get some sleep.  I haven't had a full nights sleep since September but I've come close:). Hang in there You will feel better soon!

Thyroid cancer here. It's been 8 years, it was easier than benzo wd...

 

 

Y'all have me wondering if I should just keep tapering during chemo since I'm going to feel crappy anyway. I'm going to wait to talk to my oncologist and pdoc, and obviously recover from surgery, but I hate being at this standstill in my taper.  I'm sure once I get started with the process the right path will come to light. Right now it is a black box for me since I'm not even sure what my chemo regimen will be. Just hate wasting all this time!

 

Hey Hope,

Listen, you do what you feel is best.  The choice is yours, if you want to continue to taper then continue.  I think you're right when you state that "the right path will come to light".  See how you feel and go from there.  I think finding out what your next course of treatment will entail should help guide you a little better.  I hope you're still doing well after surgery!

 

 

Hello everyone

I am a 4 yea breast cancer survivor. I had stage 1 breast cancer on the right breast. I didnt need chemo

or radiation so I got lucky on that part. i had a bilateral masectomy where they put tissue expanders in

for six months to make room for Implants.

 

Thank you for everyone's support. Kim

 

Hi Luckycharm,

 

Were you given Ativan during treatment or were you already taking it beforehand?

 

Congrats on 4 years!

Hi Lucky Charm and Happy Me, welcome to our little group. There sure are times I think benzo w/d is worse than chemo. Astonishing how crappy it can be. We are tough cookies.

Thyroid cancer here. It's been 8 years, it was easier than benzo wd...

 

Hi Happy me!  I just had an ultrasound on my thyroid this morning and found out this afternoon I have to have a biopsy.  I just finished chemo a little over 4 months ago so I'm hoping the biopsy won't show anything bad.  It's always something!

 

Anyway, nice to meet you.

 

How much clonazepam were you on before your cold turkey?

On no. Well I had the biopsy showed no cancer. I insisted the surgery. Glad I did. It spread to my nodes. It's miserable but doable. I'm sorry to hear this. Hope it's nothing. Keep a close eye make sure it don't grow.

On no. Well I had the biopsy showed no cancer. I insisted the surgery. Glad I did. It spread to my nodes. It's miserable but doable. I'm sorry to hear this. Hope it's nothing. Keep a close eye make sure it don't grow.

 

Wow, it's a good thing you insisted.  Although there are no guarantees, I'm having it done in a good hospital and my oncologist will be following all results, etc. so hopefully I'll be in good hands.  Also, I recently had a PET scan so Nothing should be too out of control yet if something is cancerous...this is my hope anyway.  I'll be having the biopsy in a couple weeks!

 

Did you have any symptoms?  My throat hurts but I'm not sure if it's allergies or the nodules!

The endocrinologist is watching my thyroid too. It's gone a bit hyper. It's been headed that way for a while I guess, but I'm wondering if chemo made it spaz out.

 

I had an iodine uptake test and an ultrasound a few months ago - nodules, but they don't think it's cancer. So for now we monitor my TSH (almost non-existent) and T3 and T4. They are high but not off the charts.

 

I sure hope my levels remain steady for now, as I really do not want to add thyroid issues and treatment on top of benzo withdrawal and cancer.

 

I've been healthy my whole life, until 1 year ago, when the shit hit the fan. Now my body is suddenly cracking to pieces. Geez....

 

Wishing all of us cancer/benzo warriors good health in the future! The sooner the better.