Cancer Support Group

[[Tr...]]

Hi Trying, the BBQ was all right, but I showed up late since I was working. I didn't mind having to work on the 4th though, since I'll get an extra chubby paycheck. I'm saving up for the dentist. I haven't been since before chemo, so over a year. I know things will be a mess.

 

Hope, how are you doing? I hope your symptoms are settling down.

Th

 

Good for you!  I know my teeth/gums are a mess.  I'm going to have to wait a bit before I go.  Nothing wrong with some extra cash...even if it will be going to the dentist!

 

Have a great night!

[[kc...]]

Hello fellow survivors...cancer and benzo. Hope my fellow travelers on these two strange journeys are...how to put this...well, surviviving and thriving. My three pieces of news are: 1) today I jumped off my Ativan! 2) I had my infusion port removed a week and a half ago 3) my knee replacement surgery which had been scheduled for 8/4 has been rescheduled for 12/8 because my surgeon broke his leg. I want to stay with him because he is one of two in my area that does a "quad saving minimally invasive" surgery, and December is a better time for me than late October which was the earliest he was available.

[[Tr...]]

1.) Congratulations!

2.) Must feel so great to have it out of there!

3.) Keep us posted!

 

I hope you have a little effects as possible after jumping unless they're positive effects!

Nice job

[[Ho...]]

Hello fellow survivors...cancer and benzo. Hope my fellow travelers on these two strange journeys are...how to put this...well, surviviving and thriving. My three pieces of news are: 1) today I jumped off my Ativan! 2) I had my infusion port removed a week and a half ago 3) my knee replacement surgery which had been scheduled for 8/4 has been rescheduled for 12/8 because my surgeon broke his leg. I want to stay with him because he is one of two in my area that does a "quad saving minimally invasive" surgery, and December is a better time for me than late October which was the earliest he was available.

 

Congrats kc! Keep us posted on how you are doing after the jump! Maybe it's better your surgery is later anyway to give you some time to recuperate from the taper.

[[so...]]

Hello fellow survivors...cancer and benzo. Hope my fellow travelers on these two strange journeys are...how to put this...well, surviviving and thriving. My three pieces of news are: 1) today I jumped off my Ativan! 2) I had my infusion port removed a week and a half ago 3) my knee replacement surgery which had been scheduled for 8/4 has been rescheduled for 12/8 because my surgeon broke his leg. I want to stay with him because he is one of two in my area that does a "quad saving minimally invasive" surgery, and December is a better time for me than late October which was the earliest he was available.

 

Well done on the jump! I hope it goes smoothly.

 

I had my intra-peritoneal port, which infused chemo right into the abdominal cavity, removed a while back, but my chest port remains. It's been over a year now, but I still get the heebie-jeebies when I look at it, and especially when I have to trot down to the Cancer Center to get it flushed every few weeks. I do not like being IMPLANTED. It's just creepy.

 

I hope everyone is feeling good today.

[[so...]]

Hi Trying, the BBQ was all right, but I showed up late since I was working. I didn't mind having to work on the 4th though, since I'll get an extra chubby paycheck. I'm saving up for the dentist. I haven't been since before chemo, so over a year. I know things will be a mess.

 

Hope, how are you doing? I hope your symptoms are settling down.

Th

 

I'm doing OK but I got another expander fill today so am waiting for the pain to hit. It feels so tight! It's amazing they can get things to stretch like this. I hate to say it but I don't think this is as bad as the last one but I'll probably know more tomorrow by how I'm feeling.  I'm at 300 cc now and goal is 500. It will take me 3-4 more fill appts scheduled every two weeks and then wait two months for implant exchange so looking at October or November. I'm itching to continue my taper again. I figure as long as I feel like crap might as well be tapering. Just giving myself a few days to get over the fill and get used to the tamoxifen, which doesn't seem to be making me feel much worse. Glad everyone had an OK 4th. I just met somebody on one of my breast cancer boards who is done with her year of treatment and is now dependent on Xanax and Percocet. Now they want to wean her off. They told her to cut her Xanax from 4 mg a day to 1.5 mg per day to "taper." Holy cow! Luckily she has some extra pills and is going slower but it amazes me how they give these things to cancer patients without a second thought of what happens after treatment is done!

 

I hope you are doing well, Hope. I agree, the docs put people on benzos and abandon them to fend for themselves after they get addicted, because they are clueless. Can your friend find another doctor who will help her with a slower taper? Dropping from 4 mg X to 1.5 mg sounds really scary. Yipes.

[[Ho...]]

Hi Trying, the BBQ was all right, but I showed up late since I was working. I didn't mind having to work on the 4th though, since I'll get an extra chubby paycheck. I'm saving up for the dentist. I haven't been since before chemo, so over a year. I know things will be a mess.

 

Hope, how are you doing? I hope your symptoms are settling down.

Th

 

I'm doing OK but I got another expander fill today so am waiting for the pain to hit. It feels so tight! It's amazing they can get things to stretch like this. I hate to say it but I don't think this is as bad as the last one but I'll probably know more tomorrow by how I'm feeling.  I'm at 300 cc now and goal is 500. It will take me 3-4 more fill appts scheduled every two weeks and then wait two months for implant exchange so looking at October or November. I'm itching to continue my taper again. I figure as long as I feel like crap might as well be tapering. Just giving myself a few days to get over the fill and get used to the tamoxifen, which doesn't seem to be making me feel much worse. Glad everyone had an OK 4th. I just met somebody on one of my breast cancer boards who is done with her year of treatment and is now dependent on Xanax and Percocet. Now they want to wean her off. They told her to cut her Xanax from 4 mg a day to 1.5 mg per day to "taper." Holy cow! Luckily she has some extra pills and is going slower but it amazes me how they give these things to cancer patients without a second thought of what happens after treatment is done!

 

I hope you are doing well, Hope. I agree, the docs put people on benzos and abandon them to fend for themselves after they get addicted, because they are clueless. Can your friend find another doctor who will help her with a slower taper? Dropping from 4 mg X to 1.5 mg sounds really scary. Yipes.

 

I hope she can.  She told me she had been on Xanax once before so knows not to go too fast.  She is obviously is not taking the doc's recommendations and is going slower.  I did give her the link to the BB site.  In other news, I just restarted my taper today.  I'm nervous, it's been almost 2 and a half months since I've made a cut.  But today is a landmark, 1/3 of my starting dose of Valium is now gone!  Whatever happens, I will not go back.

[[so...]]

Good luck, I hope your cut is a smooth one.

[[Ho...]]

Good luck, I hope your cut is a smooth one.

 

Thanks, I'm starting to feel it. Had a mini panic attack at a restaurant this evening. I'm out of shape with this taper thing with the time off. So time to buckle down for the ride and then wait to stabilize. Gosh I hate this!

[[Ho...]]

SS,

 

Just curious, are you going to keep with the 0.5 mg cuts as long as you can or go to 0.25 mg cuts at some point? And looks like from your sig you are doing about 3 week holds? Just curious. I just hit the 10 mg mark but just thinking ahead for

When I get under 5 mg.

 

Hope

[[so...]]

Hi Hope,

 

For now, I plan to stay with reductions of .5 mg, as long as they continue to be OK for me. If I start to have more difficulty, I'll begin to reduce by .25 mg. That will be 1/8 of a 2mg pill, so pretty small. Splitting it could be challenging, and I expect that the pieces won't be exactly equal, but I think the long half-life of V should make that problem a little smoother. A little bit of daily variance should not matter quite as much it would with a short acting benzo.

 

I'd rather stick to cut and hold and not switch to liquid taper, but I may change my mind on that too at some point. As we know, the only thing that can be predicted with tapers is that they are unpredictable!

 

I am working with a doctor who specializes in addiction and has helped about 50 people get off benzos. He crosses his patients over to Valium and encourages a full 1-month hold between reductions. That said, despite his experience I have some concerns. When we first met, he gave me the 6-week option or the 6-month option. Needless to say, I went with the 6-month. 6 weeks? No way!

 

He encouraged me to try to go faster ("better to be off than on"), but I told him I wanted to go slowly and in a controlled manner, since I must work and want to keep symptoms as manageable as possible. So he was OK with me changing from 1 mg cuts to .5 mg cuts. I don't know whether he will be OK with me shifting to .25 mg cuts if I feel the need. This would take me well past his 6-month goal, which seems to bother him more than it bothers me, even with cancer and perhaps another surgery lurking over my shoulder.

 

I have been cutting a bit shy of four weeks for a couple of reasons - I felt stable enough to do it, and I want to do a bit of pill hoarding. Doesn't that make me sound like an addict - sheesh! But in case he tries to push a faster taper on me, I want to have built up a bit of a reserve so I can continue to go at a slower pace.

 

He did say some astonishing things to me last time I saw him. That benzos are a "very safe and clean drug" and that I did not need to fear having to take one again in the future if needed. When I encouraged him to take a look at Benzo Buddies, he was disinterested and said that a lot of "those people" are mentally ill.

 

Wow... I disagree with him on both counts. But he does have some knowledge and experience, which is better than a doctor who doesn't know a thing. He has had success getting people off, so I'm sticking with him. I think his heart is in the right place, and he is learning with each patient he gets.

 

But truly, when I compare what he says to what people here on BB say, I believe the people here in the trenches. They know what the doctors do not. I'd love to find a doctor who has personally been torn apart by benzos and had to rebuild himself. Now that would be an awesome doctor.

[[Ho...]]

Hi Hope,

 

For now, I plan to stay with reductions of .5 mg, as long as they continue to be OK for me. If I start to have more difficulty, I'll begin to reduce by .25 mg. That will be 1/8 of a 2mg pill, so pretty small. Splitting it could be challenging, and I expect that the pieces won't be exactly equal, but I think the long half-life of V should make that problem a little smoother. A little bit of daily variance should not matter quite as much it would with a short acting benzo.

 

I'd rather stick to cut and hold and not switch to liquid taper, but I may change my mind on that too at some point. As we know, the only thing that can be predicted with tapers is that they are unpredictable!

 

I am working with a doctor who specializes in addiction and has helped about 50 people get off benzos. He crosses his patients over to Valium and encourages a full 1-month hold between reductions. That said, despite his experience I have some concerns. When we first met, he gave me the 6-week option or the 6-month option. Needless to say, I went with the 6-month. 6 weeks? No way!

 

He encouraged me to try to go faster ("better to be off than on"), but I told him I wanted to go slowly and in a controlled manner, since I must work and want to keep symptoms as manageable as possible. So he was OK with me changing from 1 mg cuts to .5 mg cuts. I don't know whether he will be OK with me shifting to .25 mg cuts if I feel the need. This would take me well past his 6-month goal, which seems to bother him more than it bothers me, even with cancer and perhaps another surgery lurking over my shoulder.

 

I have been cutting a bit shy of four weeks for a couple of reasons - I felt stable enough to do it, and I want to do a bit of pill hoarding. Doesn't that make me sound like an addict - sheesh! But in case he tries to push a faster taper on me, I want to have built up a bit of a reserve so I can continue to go at a slower pace.

 

He did say some astonishing things to me last time I saw him. That benzos are a "very safe and clean drug" and that I did not need to fear having to take one again in the future if needed. When I encouraged him to take a look at Benzo Buddies, he was disinterested and said that a lot of "those people" are mentally ill.

 

Wow... I disagree with him on both counts. But he does have some knowledge and experience, which is better than a doctor who doesn't know a thing. He has had success getting people off, so I'm sticking with him. I think his heart is in the right place, and he is learning with each patient he gets.

 

But truly, when I compare what he says to what people here on BB say, I believe the people here in the trenches. They know what the doctors do not. I'd love to find a doctor who has personally been torn apart by benzos and had to rebuild himself. Now that would be an awesome doctor.

 

SS,

 

Sounds like you have a good plan and your doc is mostly supportive. Mine has really been wonderful even though he's scratching his head at how hard this has been for me. This is his first experience with a Valium taper, I lobbied for it after reading the Ashton manual. He usually crosses people to clonazepam. Anyway, I don't think anybody can truly understand it until they have lived it. I am actually a cardiologist but have been out of practice about 5 years to stay home with my daughter. I knew benzos were addictive but used Xanax short term low dose after a health crisis and thought it was OK since it was not very long and low dose. It took me a little while to figure out the why I was getting sicker and more anxious and the PA at my primary docs office told me I was an anxiety filled nutcase who would never get off Xanax. She told me to just C/t it because there was no way I was dependent after a few weeks. I was having very bad interdose withdrawal and very much dependent at that point. So this stuff basically makes you look like you are crazy! Most folks I've met on this site seem to be victims of being prescribed this crap and not mentally ill or drug abusers. So anyway, I'm a doc who's had my life torn apart and trying to rebuild. If I ever get well again, I would like to go to war against these things. I'm sick of all the press opiates are getting and no mention of benzos! maybe I will write a best selling book. Who knows.

[[so...]]

I hear you. It frustrates me too that opiates get all the attention. I don't know how many people benzodiazepines have killed, but I'm sure there have been some. I have wondered about Heath Ledger. He suffered from terrible insomnia, probably prescribed benzos. It sounds like his sleep got worse and worse, until the poor guy was utterly frantic.

 

These drugs do make it look like we have mental illness. Very little understanding out there that they actually create the illness. I look forward to reading your book.

[[Ho...]]

I hear you. It frustrates me too that opiates get all the attention. I don't know how many people benzodiazepines have killed, but I'm sure there have been some. I have wondered about Heath Ledger. He suffered from terrible insomnia, probably prescribed benzos. It sounds like his sleep got worse and worse, until the poor guy was utterly frantic.

 

These drugs do make it look like we have mental illness. Very little understanding out there that they actually create the illness. I look forward to reading your book.

 

I know he was full of benzos poor guy. Benzos were involved in so many other star's deaths too, usually combined wth other things. Unfortunately it's hard to off yourself with just benzos alone so that's why they get no press. But the utter hell withdrawal is enough to warn people to

stay away. I'm sure somebody's already written a book, so I would have to figure out my angle. But first I need a working brain!

 

 

[[so...]]

Yeah, benzos don't kill in and of themselves, but I have wondered about suicides. I had a fortunately brief but horrifying four day experience with Xanax prescribed by my well-meaning but ignorant primary care doctor when she tried to help me start to get off the Ativan. It landed me in the ER. I have never felt so dreadful in my life, and that includes chemo.

I was asked if I was suicidal. My response was "No, but I will be if I keep feeling like this". My biggest fear while I taper is landing there again. Thank goodness my addiction doc switched me to Valium and I adjusted to it nicely. Phew!

[[Ho...]]

Yeah, benzos don't kill in and of themselves, but I have wondered about suicides. I had a fortunately brief but horrifying four day experience with Xanax prescribed by my well-meaning but ignorant primary care doctor when she tried to help me start to get off the Ativan. It landed me in the ER. I have never felt so dreadful in my life, and that includes chemo.

I was asked if I was suicidal. My response was "No, but I will be if I keep feeling like this". My biggest fear while I taper is landing there again. Thank goodness my addiction doc switched me to Valium and I adjusted to it nicely. Phew!

 

Yes I am sure there have been quite a few benzo related suicides. I have no idea where to find the numbers on that but would be good to know. I have had a few really bad cuts where I wanted to die but have no intention of ever acting on it. But I can see how things could get so bad that someone would want to end the misery. These pills are truly poison and yes ,Valium was the only way out for me. The withdrawals between Xanax doses were too strong. I tried to wean off Xanax directly and could not do it. Valium has its own set of issues but at least I am making slow progress.

[[Tr...]]

In other news, I just restarted my taper today.  I'm nervous, it's been almost 2 and a half months since I've made a cut.  But today is a landmark, 1/3 of my starting dose of Valium is now gone!  Whatever happens, I will not go back.

 

How wonderful Hope, I'm so happy for you!  Congrats on your landmark!

How are you feeling?

I remember having an attack in a restaurant after one of my cuts on Mother's Day. 

I hope your cut is the best yet!

[[Ho...]]

In other news, I just restarted my taper today.  I'm nervous, it's been almost 2 and a half months since I've made a cut.  But today is a landmark, 1/3 of my starting dose of Valium is now gone!  Whatever happens, I will not go back.

 

How wonderful Hope, I'm so happy for you!  Congrats on your landmark!

How are you feeling?

I remember having an attack in a restaurant after one of my cuts on Mother's Day. 

I hope your cut is the best yet!

 

Thanks! Well I'm a bit rusty at this cutting thing. Starting to feel yucky and I had a mini panic attack at a restaurant last night. My cuts were pretty predictable before but I feel a bit off kilter between the surgery and the tamoxifen, which I know is causing some side effects but is difficult to separate out from the withdrawal symptoms. But I will keep pressing forward. I'm trying to make at least some progress with my taper before I have to do my next surgery in a few months. I have to get another expander fill on Tuesday and hoping the cut won't make the muscle spasms worse  I figure if I'm suffering anyway might as well be tapering.

[[so...]]

Hi Hope, how are you doing?

[[Ho...]]

Hi Hope, how are you doing?

 

Thanks for asking!  Feeling a bit better.  Valium always gets me on day 4/5 after a cut then I fell a bit better (now), then get my butt kicked again somewhere around day 9-11, then I get better from there.  Don't know why it hits twice but I've seen a few others say the same thing. I am planning on holding for 3 weeks then seeing where I am at that point.  I'm going for an expander fill on Tuesday so we'll see how the cut affects that.  Cuts always give me spasms in my back and those are starting to gear up, so I imagine my pec muscles aren't going to like it either.

[[so...]]

So glad you are feeling well enough to continue your taper. Hope it's an easy one.

[[so...]]

Hi Hope, how has your week been?

[[Ho...]]

Hi Hope, how has your week been?

 

Well, as far as cuts go, I've had much worse.  Today is day 13 and I feel like I'm on the upslope now.  I'll hold for another week and probably cut another 0.5 mg then as long as things are OK.  Had another fill of 50 cc and that went OK.  I have 150cc left to go and am planning on splitting that into 3 appts 2 weeks apart.  Hopefully I''ll be able to tolerate it. I would like to get my implant exchange done before the holidays and the new year for deductible reasons.  How are things with you SS?  And TTBP, haven't heard from you in a little while! Hope things are well.

[[so...]]

I'm glad the cut was tolerable. The fills you have to get for your reconstruction sound pretty tough. I admire your stamina, doing this and tapering!

 

I've been kind of meh with this latest cut. Tolerable days, blech days... "riding the wave", as my doctor says. I'm now at day 20 of 4.0 mg V. Will drop another .5 mg probably in a few days. Want to feel a little more stable first.

 

TTBP's thread ("having a rough day" I think it's called) got moved over to Buddie Blogs. She is updating there daily, so that's where you'll find her. I chat with her over there. I don't know if she checks in here much these days, so come on over. 

[[Ho...]]

I'm glad the cut was tolerable. The fills you have to get for your reconstruction sound pretty tough. I admire your stamina, doing this and tapering!

 

I've been kind of meh with this latest cut. Tolerable days, blech days... "riding the wave", as my doctor says. I'm now at day 20 of 4.0 mg V. Will drop another .5 mg probably in a few days. Want to feel a little more stable first.

 

TTBP's thread ("having a rough day" I think it's called) got moved over to Buddie Blogs. She is updating there daily, so that's where you'll find her. I chat with her over there. I don't know if she checks in here much these days, so come on over. 

 

I don't know if it's stamina or stubbornness lol. I figure if I have to suffer with the fills

I might as well be making some progress on the taper. I'm not going to push too hard though. I'll find the blog and join in the fun