Cancer Support Group

[[so...]]

Hi KC, and welcome to our little group. There are not many of us, so the topic falls quickly in the list and needs to be hunted down. Looks like your taper is going well - keep on trucking!

 

Trying, good luck with the thyroid biopsy. My thyroid is going hyper, and we are watching it. The last thing we need is for that gland to go out of whack and screw with our symptoms. Enough problems with our bodies already!

 

Hope, I am so sorry that you are having problems post-op. I'm sure your brain is going "WTH???" about it all. I sincerely hope the symptoms settle for you soon and you start to feel better.

 

My home laptop crashed so I cannot log in much at the moment. Thinking of you all and sending best wishes. 

[[Ho...]]

Hi KC, and welcome to our little group. There are not many of us, so the topic falls quickly in the list and needs to be hunted down. Looks like your taper is going well - keep on trucking!

 

Trying, good luck with the thyroid biopsy. My thyroid is going hyper, and we are watching it. The last thing we need is for that gland to go out of whack and screw with our symptoms. Enough problems with our bodies already!

 

Hope, I am so sorry that you are having problems post-op. I'm sure your brain is going "WTH???" about it all. I sincerely hope the symptoms settle for you soon and you start to feel better.

 

My home laptop crashed so I cannot log in much at the moment. Thinking of you all and sending best wishes. 

 

Thanks! I had gotten my brain relatively happy before

Surgery with a long hold and then it was really happy postop

With all the meds they threw at me. Now things are wearing off and

It's pissed. It feels just like a cut but I have no way of predicting if this is the low point or things will get worse. I had my taper down to a science, and this totally threw things off! Have a call

into my pdoc and surgeon to discuss.

[[Tr...]]

Wow. I wish I had seen this support group earlier. The reason I began using benzos was to combat anxiety and sleep issues during second half of cancer treatment in 2015. I was treated for CLL/SLL which is a type of non Hodgkin's lymphoma. I was diagnosed late May and treated July-Nov. 2015. I took Ativan as needed from Jun-Sept., and 2 mg per day from mid Sept. through end of Dec. 2015. I am in remission and have spent 6 months tapering off A. It hasn't been fun, but as was the case during treatment, I work, exercise, and generally lead a normal life. I think my experience in dealing with the physical and emotional impacts of cancer and cancer treatment prepared me for dealing with all the sx of benzo tapering. I plan to complete my taper in 2-3 weeks, and then have total knee replacement surgery early August. Ugh! But I'm alive, in remission, and grateful for the opportunity to continue to experience life, including the highs and lows, because it sure as shooting beats the alternative.

 

Hi KC,

Happy you joined the group!  I had NHL too and am also weaning off of Ativan.  You're ahead of me though, I probably won't be done until September the earliest.  How do you feel knowing you're just a few weeks away from no more Ativan?  Wow, you just can't catch a break can you?  Knee replacement surgery? 

I get what your saying.  I'm so great full to be alive too!  Did you have chemo in the hospital?  I'm just curious.  I had 6 rounds consisting of 5 days each.  Mine was 5 days continuous through an IV.  I'm happy to be in recovery mode even though it's filled with some funky side effects!  I totally agree!  I find tapering in some ways very similar as chemo in terms of it feeling cyclical.

 

Best of luck on your journey!

[[so...]]

Hope, how are you doing? What did your doctors say? I'm curious - they did give you benzos while you were hospitalized for your surgery? Did you ask them not to, and they overruled your request?

 

My oncologist is now talking about taking out my uterus - they could not during my initial cancer surgery - and I'm weighing what to do. I will not, must not, let them near me with any benzos. Too scared they will ruin all my hard work.

 

I hope you all are having a good day. I'm at Day 17 of my latest cut, and feeling weird. An uptick in anxiety and cog fog/head creepiness today. Just breathe and ride the wave...

[[Ho...]]

Hope, how are you doing? What did your doctors say? I'm curious - they did give you benzos while you were hospitalized for your surgery? Did you ask them not to, and they overruled your request?

 

My oncologist is now talking about taking out my uterus - they could not during my initial cancer surgery - and I'm weighing what to do. I will not, must not, let them near me with any benzos. Too scared they will ruin all my hard work.

 

I hope you all are having a good day. I'm at Day 17 of my latest cut, and feeling weird. An uptick in anxiety and cog fog/head creepiness today. Just breathe and ride the wave...

 

The anesthesiologist gave me 4 mg of IV Versed in preop to sedate me for a local pec block. It didn't really sedate me since I'm so tolerant and I ended up having a vagal reaction where my heart rate went into the 40s. I was too flustered to even decline the benzos but I did ask for 2.5 mg Iv Valium during or after surgery to cover the afternoon dose I normally take and he gave me 5 mg instead. I was asleep, I couldn't do anything about it. But I think it wasn't just the extra benzos, they gave me a dose of steroid pre op to help with nausea and some of the general anesthetic also hits gaba receptors. My withdrawal symptoms didn't really ramp up until 2.5 weeks after surgery. Postop I was on pain meds, muscle relaxers, and antibiotics (Keflex). So anyway, who knows the exact cause but all that probably influenced my V blood levels. I am sticking with my same V dose and trying to stabilize. Hopefully just a temporary setback. Bottom line is surgery may ramp up your symptoms, but I had a big tumor, so I had no choice.

 

Saw the oncologist today and the test on the tumor showed low risk of recurrence so chemo is not beneficial. I am happy about this. I don't think I could handle it between the pain of the breast reconstruction and the V withdrawals. I have tissue expanders in that are about halfway full and will require a second operation for the final implants. I would like to resume my V taper once I'm stabilized and recovered more from surgery. I'm having a lot of pec muscle spasms from the tissue expanders and I'm sure the V withdrawal is not helping.

[[so...]]

No chemo needed? That is fantastic news! What a relief that must be. You'll be able to get back on track with your taper much more quickly.

[[Ho...]]

No chemo needed? That is fantastic news! What a relief that must be. You'll be able to get back on track with your taper much more quickly.

 

Yes I am so happy about no chemo. I don't think I could handle

One more thing right now. I do have to start tamoxifen which is an estrogen blocker to prevent return of the cancer, wondering if that will affect my

Withdrawal. Yes I'm ready to get back to tapering when I'm up to it. If you

Need the hysterectomy I wouldn't sweat it. You'll need way less

meds than I did for my surgery. It may

set you back a little, but I don't think it would be earth shattering, and then you could

get right back on track.

[[Tr...]]

Hi Hope,

What awesome news!!  I'm so excited that you don't need chemo.  I smiled ear to ear when I read what you wrote.  When is your surgery?  How is your pain level?

 

Congrats on no chemo

[[Tr...]]

Hey SS,

Are they trying to prevent any more cancer?  Is that why they want to remove your uterus? 

How have you been feeling?

[[Ho...]]

Hi Hope,

What awesome news!!  I'm so excited that you don't need chemo.  I smiled ear to ear when I read what you wrote.  When is your surgery?  How is your pain level?

 

Congrats on no chemo

 

Oh gosh I can't think about surgery again lol, I'm just 4 weeks out from the last one. Pain is improving some, or at least same amount but able to accomplish more during the day. It's a work in progress. I think the physical therapy and exercises are helping, although they do flare up the pain. It was a big surgery. As far as the final implant exchange, that depends on when I can get my tissue expanders filled to goal. Or when I just can't take it anymore I guess. I have an appt next week for a fill. I may ask them to put in less because the 60 cc they put in the first time about killed me. I started out with 180 cc in each postop so am now at 240 and my implants are 500cc so I'm halfway there. they schedule the fills every two weeks. So it just depends what I can tolerate, and then once you are at goal I think they wait a month to make sure you are stretched enough. My goal is to get back to my old size which was reasonable and not too big, no Dolly Pardon boobs for me lol. Too much pain! Yes I am so pleased about the chemo. When my doctor handed me the paper with the score on it showing the number 9 (<10 is considered low risk) I began to cry because I knew I didn't have to do chemo. I honestly wasn't  sure how I would get through it as sick as I have been with the Valium taper.

[[so...]]

Hey SS,

Are they trying to prevent any more cancer?  Is that why they want to remove your uterus? 

How have you been feeling?

 

Hi Trying, yes it would be to prevent more cancer. I underwent genetic testing to find out why I got ovarian cancer, and we found that I have a genetic mutation causing something called Lynch Syndrome. This condition greatly increases the chance of colon and uterine cancers in particular, but also ovarian and some other cancers too. My maternal grandmother died of uterine cancer, so the Lynch probably was passed down from her to my mother to me.

 

My surgeon opted to leave my uterus in when she did my surgery last June, fearing that she would spread the cancer around my pelvis too much if she started monkeying around down there. The cancer had seeded onto the uterus and pelvic floor. So she just took the ovaries, fallopian tubes and the omentum, and burned (literally) all the other bits of cancer that she saw.

 

But with this diagnosis of Lynch Syndrome, my oncologist is now more concerned about getting the uterus out before it starts making trouble. But I really think I will wait for a while, and get Benzo w/d out of the way. This might not be the right decision, but I have to say in all honesty that I fear the misery of Benzo w/d symptoms just as much as I fear cancer. I just cannot see piling a surgery on top of this right now.

 

This could also be a difficult surgery, with potential for bowel complications due to adhesions from the first surgery. And in all seriousness, I have to weigh whether going after the uterus would be worth it in the long run, since the chance of recurrence of my ovarian cancer is possible.

 

Too many difficult choices. Sometimes I just want to stick my head in the sand and forget any of this happened to me... 

[[Tr...]]

Hey SS,

Are they trying to prevent any more cancer?  Is that why they want to remove your uterus? 

How have you been feeling?

 

Hi Trying, yes it would be to prevent more cancer. I underwent genetic testing to find out why I got ovarian cancer, and we found that I have a genetic mutation causing something called Lynch Syndrome. This condition greatly increases the chance of colon and uterine cancers in particular, but also ovarian and some other cancers too. My maternal grandmother died of uterine cancer, so the Lynch probably was passed down from her to my mother to me.

 

My surgeon opted to leave my uterus in when she did my surgery last June, fearing that she would spread the cancer around my pelvis too much if she started monkeying around down there. The cancer had seeded onto the uterus and pelvic floor. So she just took the ovaries, fallopian tubes and the omentum, and burned (literally) all the other bits of cancer that she saw.

 

But with this diagnosis of Lynch Syndrome, my oncologist is now more concerned about getting the uterus out before it starts making trouble. But I really think I will wait for a while, and get Benzo w/d out of the way. This might not be the right decision, but I have to say in all honesty that I fear the misery of Benzo w/d symptoms just as much as I fear cancer. I just cannot see piling a surgery on top of this right now.

 

This could also be a difficult surgery, with potential for bowel complications due to adhesions from the first surgery. And in all seriousness, I have to weigh whether going after the uterus would be worth it in the long run, since the chance of recurrence of my ovarian cancer is possible.

 

Too many difficult choices. Sometimes I just want to stick my head in the sand and forget any of this happened to me... 

 

With the exception of fearing the misery of benzo withdrawal as much as fearing cancer, I completely get how you feel.  You know I still have days where everything that happened to me seems so surreal.  Like there is no way that I had cancer.  I'm still not there yet in terms of totally accepting that I'm a cancer survivor, that I even had cancer in the first place...if that makes any sense!

 

You do have a lot on your plate.  When I'm faced with those types of decisions I usually go by 2 things, which is the lesser of two evils and to go with my gut instincts!  You're obviously an outstanding researcher.  You seem very intelligent.  Use that and your gut to guide you.  That's what I would do.  At times this is such a sad place to be.  For me, as long as I'm doing something to try and feel better, I 'm usually happier.  I'm usually not cancer depressed.  Admittedly I'm not the best at thinking about sad situations for long if I can avoid it.  I couldn't even retread my "chemo journal" last time I picked it up.  I read a paragraph, felt all sorts of anxious and crappy then put it down. 

 

You just keep your head up!  You can beat this and feel better.  Make the best decision to ensure, to your knowledge, that you will feel better!

[[so...]]

Thanks Trying. 

 

I think if my cancer had a better cure rate I would not be so depressed and worried. I'd be able to hold up my head a bit better and power through the benzo w/d with a more positive attitude.

 

I also just cannot see putting a surgery on top of withdrawal. Sounds too nightmarish - scares the hell out of me to combine the two. So, even though my oncologist might not like this decision, I plan to complete my taper and recover, and then tackle the hysterectomy sometime next year.

 

I did talk to a friend who is a surgeon, and she said that they can use other meds besides benzos for pre-anesthetic and afterward. I will insist upon it. No more benzos - I think I might even get a medic-alert bracelet stating that I cannot be given benzos. God forbid they give me any if I am in a situation when I cannot advocate for myself. Cuz man, the docs sure love to blast their patients with that horrible stuff. And when you say "I cannot take benzos", they look at you like you're an idiot. Incredible how clueless they are.

 

You are rocking your taper! Great to see that. I hope you have an enjoyable 4th of July.

 

Hope, are you out there? I think about you a lot. How are you doing?

 

 

[[Ho...]]

Thanks Trying. 

 

I think if my cancer had a better cure rate I would not be so depressed and worried. I'd be able to hold up my head a bit better and power through the benzo w/d with a more positive attitude.

 

I also just cannot see putting a surgery on top of withdrawal. Sounds too nightmarish - scares the hell out of me to combine the two. So, even though my oncologist might not like this decision, I plan to complete my taper and recover, and then tackle the hysterectomy sometime next year.

 

I did talk to a friend who is a surgeon, and she said that they can use other meds besides benzos for pre-anesthetic and afterward. I will insist upon it. No more benzos - I think I might even get a medic-alert bracelet stating that I cannot be given benzos. God forbid they give me any if I am in a situation when I cannot advocate for myself. Cuz man, the docs sure love to blast their patients with that horrible stuff. And when you say "I cannot take benzos", they look at you like you're an idiot. Incredible how clueless they are.

 

You are rocking your taper! Great to see that. I hope you have an enjoyable 4th of July.

 

Hope, are you out there? I think about you a lot. How are you doing?

 

I'm still recovering slowly. Still lots of muscle spasm in my chest and trying to do stretches to help and get arm range of motion back. I am holding steady on my v dose while recovering and hoping the withdrawals settle out soon. I started Tamoxifen yesterday and it's making me nauseous.  I have a fill appt next week for my tissue expanders and am a bit nervous about adding extra pain, but it will put me closer to final implant surgery so have to keep ploughing forward.

[[so...]]

Good luck, I hope your symptoms settle down soon. Sounds like reconstruction is quite a process.

[[Tr...]]

Hi SS,

 

I get what you're saying.  My cancer "type" has a very positive stat for survivors but due to the immense amount of chemo my body went through I'm automatically feeling that my lifespan has been shortened quite a bit.  I figure between the cancer, my immune system being crappy, and the amount of chemo, my time is just a lot shorter than I thought it would be...than I hoped it would be.

 

Oh by the way, my thyroid biopsy came back negative!  I can't remember if I told you or not.

 

I think SS that you know your body and mind and if that's how you feel than go with it.  Hey if you need to wear a bracelet I say do it!  Leave little to no chance for error!

 

Thanks re taper!  This week has been rough overall but it was bound to happen right?  Meanwhile I'm getting hot flashes on top of everything else.  That said, I have to share with you how hard I laughed today.  I mean full belly laugh with tears and everything!  I thought you know, I've laughed more or harder since getting cancer than before.  I'll take quality over quantity every time

 

Happy 4th

[[Tr...]]

Hi there Hope!

 

I never had surgery so I'm not familiar with what you're going through.  I did have a family member go through it though and she did amazing!  You just hang in there.  I know you feel crappy between the w/d, the recovery, being put on a new med, etc.  As your body adjusts you will start to see some light.

 

I think of you all the time

[[Ho...]]

Good luck, I hope your symptoms settle down soon. Sounds like reconstruction is quite a process.

 

Yes reconstruction sucks. This was supposed to be the easier version to recover from lol! My oncologist recommended it as the expander and final implant sit behind the pec muscle so if there's a recurrence we can detect it easier. There are other reconstructive methods where they use a flap from your own abdomen and own fat tissue and apparently the recovery is more brutal, plus recurrences are harder to detect. But I am not enjoying the pec spasms, which Valium withdrawal is Making worse I'm sure. The final implants are supposed to be way more comfortable than the expanders so since I'm not getting chemo or radiation maybe I should get done with the fills and exchange surgery as soon as I can tolerate. 

[[Ho...]]

Hi there Hope!

 

I never had surgery so I'm not familiar with what you're going through.  I did have a family member go through it though and she did amazing!  You just hang in there.  I know you feel crappy between the w/d, the recovery, being put on a new med, etc.  As your body adjusts you will start to see some light.

 

I think of you all the time

 

Thank you! Looks like you are rocking along on your taper. I do not feel like I'm doing amazing right now but I'm surviving. Thank goodness I didn't have to do chemo or radiation or I think I might have jumped off the nearest bridge. The Valium taper has been crappy enough. I feel like the stress of it alone is going to shorten my lifespan or make my cancer have more

Risk of recurring. Oh well, gotta keep going.

[[Tr...]]

You're welcome!  I don't know if I'm rocking my taper but thanks for saying so . I'm doing a pretty good job living in spite of all my symptoms but I've had a lot of recent experience feeling much worse.  Chemo made me very sick and I now know I was going through withdrawals from being taken off the Klonopin on top of the effects of the chemo.  So in a nutshell I was much sicker and couldn't even get out of bed without help.  When I could, I could stand for only...20 minutes at best before needing to rest.  The whole time I had chemo, I never once walked in for treatment.  I always needed a wheel chair.  In that respect tapering is a cakewalk

 

However, some of the symptoms are incredibly unpleasant (as you know!) and unfortunately I don't see any end in sight, not far awhile anyway.  So I figure Better stay movin because life just might feel like this for a long time.  I'm getting to the point that I forgot what normal feels like!

 

I know it's hard to imagine you getting back to yourself.  You will get there!  Even though I'm not there yet, I'm much better than I was.  Today feels much better than any day from when chemo started until mid February.  Once your healed from your surgeries, this taper will be much easier to deal with.  You just hang tight!

[[so...]]

I hope you all are having a good 4th of July. I'm at work - it was necessary - but I'm about to head to a BBQ. I'm feeling "off" and funky, as usual, but not dreadful, so I hope to have an enjoyable afternoon.

[[Tr...]]

I hope you all are having a good 4th of July. I'm at work - it was necessary - but I'm about to head to a BBQ. I'm feeling "off" and funky, as usual, but not dreadful, so I hope to have an enjoyable afternoon.

 

How was your 4th?  We did most of our celebrating on the 3rd and kind of just chilled out for the fourth.  I was going to go into the city for the fireworks but I wa just too beat.  I'm hoping I can do it next year!

 

How was the BBQ?

[[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

[[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!

[[Tr...]]

Hi Hope,

 

I remember feeling the same way!  If I was going to feel crappy while recovering from chemo then I figured I might as well taper also.  I definitely didn't want to recover from chemo and then start w/ the weaning off process.  Truthfully my pills stink anyway so the thought of being on them that long made me crazy.

 

Happy this time may have been better than the last!

 

Wow, the poor thing!  What is with these doctors!!