Cancer Support Group

[[Tr...]]

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.

 

I hear ya sister and I second that wish!

One of PET scans showed something.  Apparently the ultrasound confirmed what was on the PET scan.  I believe the nodules have been there at least since December but they could have been there a lot longer too...I just don't know.  I do know there's a link between anxiety/panic attacks and thyroid conditioned though.

 

I know solitude, I feel that way about my body too.  I got neuropathy on my hands and feet, muscle degeneration, my thumb nails are indented and yellow/orange colored and ridged in the middle, my brain is fogged, and well, overall I feel like someone hijacked my body!

 

Still working like hell to get back no to be even better than who I was.  I honestly don't know if that will happen but I'd like to think it is possible

[[so...]]

Me too, I hope for a feeling of good health to return after a year of complete yuck. The peripheral neuropathy is a fun chemo side-effect, isn't it? I walk around on feet that feel like blocks of wood. I usually wear socks and full shoes, even on these hot summer days, as having my feet in sandals just feels too weird. My hands are a little better now, but I do find myself still dropping things on occasion. For a while I had a big challenge in simply turning my toothbrush over while brushing.

 

And between the "chemo-brain" and the "benzo-brain", I haven't got any intelligence left. I used to read complicated, sophisticated books, and took pride in that. Lately, I've been reading Nancy Drew books. I really hope I get some smarts back.

 

And my hair, though the least of my worries, has come in completely ridiculous. I look like I have a Brillo pad on my head. Sheesh...

 

Next Thursday is my six-month follow up appt with my oncologist - pelvic exam and CA125 blood work. Feeling the stress level rising just thinking about it.

 

I hope for the best with your thyroid stuff.

[[gl...]]

HI..Im Glama,

My first cancer was a long time ago, the dark ages (1989) At that time I was told my cancer will come back on my other breast and they were giving me 5 years (so i took all my money out of the bank an party....not true)Anyways my other breast went on 1995, when they gave me xanax, didnt know at the time what that was. I took it thru chemo and radiation (about a year) Not to much internet at the time.

Now back to the same situation, only now is pain from the badly done surgeries. 2 weeks ago had to go for a pain block on my left shoulder (no fun)and I have 2 do this every 6 months. Seems to me cancer never leaves you. Now I have to taper from these drugs again Im not a young Pup anymore.

    Love to you'll.....Glama

[[so...]]

Hi Glama, glad you found us. So they put you on Xanax when you had your second mastectomy in 1995, you took it for about a year and got off it? And now they put you back on it for residual pain from your surgeries? How long have you been on it this time?

 

I hope your taper goes smoothly. There is a chance that I will end up back in the hands of the oncologist and hospital people in the future. I will strike out with both fists at the first person who tries to come at me with a benzo. And you know they'll try. Whatever the medical condition is, benzos seems to be their default drug.

 

I even read somewhere on this forum that they give benzos to babies! Simply horrifying.

[[gl...]]

Yes...I was introduce to xanax back then when I had my second mastectomy....you know something to relax me they said.I got off of it with not to much problem , some nausea that I blame on the chemo. This time I have been in so much pain I thought the cancer was back .Once again I took the xanax, ambiem an Ativan they gave me.

 

I have been taking these for 3 month, hopefully I wont have to much trouble this time.

    Love..Glama

[[Tr...]]

Me too, I hope for a feeling of good health to return after a year of complete yuck. The peripheral neuropathy is a fun chemo side-effect, isn't it? I walk around on feet that feel like blocks of wood. I usually wear socks and full shoes, even on these hot summer days, as having my feet in sandals just feels too weird. My hands are a little better now, but I do find myself still dropping things on occasion. For a while I had a big challenge in simply turning my toothbrush over while brushing.

 

And between the "chemo-brain" and the "benzo-brain", I haven't got any intelligence left. I used to read complicated, sophisticated books, and took pride in that. Lately, I've been reading Nancy Drew books. I really hope I get some smarts back.

 

And my hair, though the least of my worries, has come in completely ridiculous. I look like I have a Brillo pad on my head. Sheesh...

 

Next Thursday is my six-month follow up appt with my oncologist - pelvic exam and CA125 blood work. Feeling the stress level rising just thinking about it.

 

I hope for the best with your thyroid stuff.

 

Yeah, in my journal I started putting numbers to the numbness and note when there is pain with it or not.  I read that neuropathy peaks around 7 months (if it doesn't go away within the few weeks after chemo) and slowly decreases after that.  My oncologist said he doesn't know if it will go away completely but that it will get better.  I'm happy to report that my hands were at a steady 3 but lately have gone down to a 1 though some days being very sore.  My feet were at a steady 7 and just this past week went all the way down to a 4, again there are times there is a lot of soreness but usually that's either when I first get up after sitting or lying down or after being on my feet for a long time.  I hate all of these symptoms, but I have, in small increments each week, added to my routine.  I think I feel like if I do enough of the right thing maybe I can make my body strong enough to fight the symptoms and be healthy.  I'm sure it's just a defense mechanism but it works for me!  Keeps me moving and distracted.  If I wasn't, I'd be so sad all the time.

 

I've been in a fog for over 20 years because of either my inner ear problems or from derealization.  Although chemo certainly has not helped that, I'm used to my head feeling full and having distorted visual perception.  Again, my biggest hope is maybe when I'm healed from the benzos I will finally see things clear.  I've even had some short moments since chemo that I have.  However I'm not holding my breath for that one.  Boy would I love to see the world, day after day, with clear eyes...ahhhh.  Anyway, I'm pretty sure the chemo fog will go away!  Sounds like you've done a lot of reading so I'm sure you've read one of the magic numbers is 2 years (on average of course)!

 

My hair is almost black!  It feels a little more like fur . I'm probably going to gel it all funky for the summer because it's not long enough to do anything else.  I haven't had short hair since I was 8 and it wasn't this short.  For most of my life my hair has been past my shoulders.  It was half way down my back before chemo!  I'm going to try and enjoy some funky styles while it grows back.  Another symptom or effect that makes me feel like someone else...like all of this is unreal!

 

Wow, 6 months huh!  I wish you lots and lots of luck!  I think somewhere in the back of our mind we will always worry a little about getting cancer again.  I think that's got to be pretty normal!  I ran into a childhood friend a couple months ago who I hadn't seen in about 30 years (I'm dating myself!).  He told me how he was a 2 year survivor of stage 4 cancer.  He looked amazing and as we swapped battle stories I realized how much worse he had it and couldn't get over how amazing he looked.  He gently smiled, looked at me and said "you know everybody's got something their dealing with."  Although I've heard this numerous times, For some reason coming from him really made it sink in. 

 

I know you're probably worried but if you can try and think positive and remind yourself how far you've come already!  You got through cancer once, you're weaning yourself off of benzos, you created a support group, you've probably done a lot of things I don't know about!  You just hold onto that strength of yours!

 

Enjoy the day!

[[Tr...]]

Yes...I was introduce to xanax back then when I had my second mastectomy....you know something to relax me they said.I got off of it with not to much problem , some nausea that I blame on the chemo. This time I have been in so much pain I thought the cancer was back .Once again I took the xanax, ambiem an Ativan they gave me.

 

I have been taking these for 3 month, hopefully I wont have to much trouble this time.

    Love..Glama

 

Hi there Glama,

 

So what are you taking now?  Are you taking Xanax, ambien, and Ativan or just one of them?

It's so great to meet you!

[[Tr...]]

Hope,

 

How are you?  I haven't seen you post in a little while.  Just wanted to check in!

[[Ho...]]

Hope,

 

How are you?  I haven't seen you post in a little while.  Just wanted to check in!

 

I'm here!. I got one of my drains  out and am hopefully getting the other out

tomorrow. It is causing me quite a bit of

Pain. I am off all pain meds except

Tylenol and ditched the muscle relaxers too. They are supposed to let me increase my activity and give me exercises when the last

Drain is out. I get my first Tissue expander fill Thursday. See the oncologist Wednesday to talk about chemo, and radiation oncologist Friday. Surgeon doesn't think I need radiation but wants

Me to see her just  in case. So big week, a little

Nervous To find out the plan.

[[Tr...]]

Hope,

 

How are you?  I haven't seen you post in a little while.  Just wanted to check in!

 

I'm here!. I got one of my drains  out and am hopefully getting the other out

tomorrow. It is causing me quite a bit of

Pain. I am off all pain meds except

Tylenol and ditched the muscle relaxers too. They are supposed to let me increase my activity and give me exercises when the last

Drain is out. I get my first Tissue expander fill Thursday. See the oncologist Wednesday to talk about chemo, and radiation oncologist Friday. Surgeon doesn't think I need radiation but wants

Me to see her just  in case. So big week, a little

Nervous To find out the plan.

 

Hi!

Great so things are moving right along.  Sorry to hear you're still in pain but glad you're able to control it with the Tylenol.  Wow, you do have a big week!  I understand how nervous you must be.  I wasn't really nervous about the chemo until the day I knew I was going to start.  That's only because I didn't know ahead of time except for the week leading up to it that I even had cancer.  That time was so busy between tests, numerous hospital staff, etc. that it all went by so quick!  No worries Hope you're doing great and have been doing great!  You are on your way to being a cancer survivor! 

 

Keep up the good work

[[so...]]

Hope, best wishes that everything goes well for you. Keep us posted.

[[Ho...]]

Hope, best wishes that everything goes well for you. Keep us posted.

 

Thanks, I'll try to update this weekend once I've had all my appointment and had time to process the treatment plan 

[[so...]]

Hey guys, I had my 6-month checkup today with my oncologist and wanted to report that my remission is stable. CA125 is low and pelvic exam normal.

 

And get this!! A couple of weeks ago I made a special appointment with him to bawl him out about putting me on Ativan and getting me hooked, and how I am now spending my precious remission time tapering slowly and dealing with crappy withdrawal symptoms. It felt good to get it off my shoulders, but I wasn't expecting anything to come of it.

 

But today he told me that he contacted my addiction specialist (I had given him his business card), they talked about benzos, and now he is having the addiction doc come to the Cancer Center to give a lecture and educate the staff about the dangers of prescribing benzos!

 

My oncologist told me that after learning more, he is committed to revamping the way the Cancer Center hands out benzos to anxious patients, and that he himself is no longer prescribing them to his patients unless he feels that their anxiety cannot be managed in any other way. He also gives them a lot more information about the possibility of dependence and withdrawal problems.

 

I'm pretty excited about this. I still have my own crappy taper to get through, but I may have helped many other cancer patients never get started on benzos at all. My oncologist even thanked me for coming to him and telling him about my trouble, and that he is determined to make a policy change after becoming more educated about this issue.

 

I made a difference today. 

[[Tr...]]

Hey guys, I had my 6-month checkup today with my oncologist and wanted to report that my remission is stable. CA125 is low and pelvic exam normal.

 

And get this!! A couple of weeks ago I made a special appointment with him to bawl him out about putting me on Ativan and getting me hooked, and how I am now spending my precious remission time tapering slowly and dealing with crappy withdrawal symptoms. It felt good to get it off my shoulders, but I wasn't expecting anything to come of it.

 

But today he told me that he contacted my addiction specialist (I had given him his business card), they talked about benzos, and now he is having the addiction doc come to the Cancer Center to give a lecture and educate the staff about the dangers of prescribing benzos!

 

My oncologist told me that after learning more, he is committed to revamping the way the Cancer Center hands out benzos to anxious patients, and that he himself is no longer prescribing them to his patients unless he feels that their anxiety cannot be managed in any other way. He also gives them a lot more information about the possibility of dependence and withdrawal problems.

 

I'm pretty excited about this. I still have my own crappy taper to get through, but I may have helped many other cancer patients never get started on benzos at all. My oncologist even thanked me for coming to him and telling him about my trouble, and that he is determined to make a policy change after becoming more educated about this issue.

 

I made a difference today. 

 

Wow SS you had quite a day!  Congrats on both staying clear and for making a difference

As my oncologist said "each time you show you are clear, the higher the percentages go up for a cure!"  I'm so happy for you.  What are you going to do to celebrate?

[[Tr...]]

Hi Hope,

 

I've been thinking about you!  I hope the sun us shining wherever you are.

[[Ho...]]

Hi Hope,

 

I've been thinking about you!  I hope the sun us shining wherever you are.

 

Thanks! It's been quite the week. Wednesday I saw my

Oncologist. I am a stage 2a. She wants to get a test called Oncotype which generates a risk score to help determine the need for chemo. So I have to wait another 2 weeks to find out about chemo. I had my first tissue expander fill Thursday and am in pain from

That.My drain came out Tuesday so I was allowed to start gentle stretches yesterday. If my range of motion in the shoulders is not back in 2 weeks I will need physical therapy. I saw the radiation oncologist today and she sees no

Need for radiation. So that's what I know!

[[Tr...]]

Hi Hope,

 

I've been thinking about you!  I hope the sun us shining wherever you are.

 

Thanks! It's been quite the week. Wednesday I saw my

Oncologist. I am a stage 2a. She wants to get a test called Oncotype which generates a risk score to help determine the need for chemo. So I have to wait another 2 weeks to find out about chemo. I had my first tissue expander fill Thursday and am in pain from

That.My drain came out Tuesday so I was allowed to start gentle stretches yesterday. If my range of motion in the shoulders is not back in 2 weeks I will need physical therapy. I saw the radiation oncologist today and she sees no

Need for radiation. So that's what I know!

Hi Hope!

So happy to hear you can start gentle stretches!  It sucks that you're in pain though. 

So now you got to wait for a couple of weeks huh?  How do you feel about that?

It sounds to me like you have a great team of professionals around you

 

Thanks so much for taking the time to write!  I kept checking to see if there was any news.

It sounds to me that you are doing amazing! 

 

[[Ho...]]

Hi Hope,

 

I've been thinking about you!  I hope the sun us shining wherever you are.

 

Thanks! It's been quite the week. Wednesday I saw my

Oncologist. I am a stage 2a. She wants to get a test called Oncotype which generates a risk score to help determine the need for chemo. So I have to wait another 2 weeks to find out about chemo. I had my first tissue expander fill Thursday and am in pain from

That.My drain came out Tuesday so I was allowed to start gentle stretches yesterday. If my range of motion in the shoulders is not back in 2 weeks I will need physical therapy. I saw the radiation oncologist today and she sees no

Need for radiation. So that's what I know!

Hi Hope!

So happy to hear you can start gentle stretches!  It sucks that you're in pain though. 

So now you got to wait for a couple of weeks huh?  How do you feel about that?

It sounds to me like you have a great team of professionals around you

 

Thanks so much for taking the time to write!  I kept checking to see if there was any news.

It sounds to me that you are doing amazing!

 

I do have some great docs. I am not so happy about the wait, but I'm glad she's doing the testing which will help us make a decision on the chemo. If I have to start, it will be the first or second week of July. I'll have to get a port and then get started. Definitely don't feel ready for chemo!

[[Tr...]]

You know Hope I'm going to go out on a limb here and say nobody is ever ready for chemo . This is especially true if you've never had it before.  Although I'm sure people who have gone through it more than once weren't thrilled about getting again.

 

Look in a nutshell, all chemo is is a collection of chemicals that destroy the cells and makes you feel sick.  Each persons "sick" is different just as each persons withdrawals are different.  I think in some ways you are more prepared than you think!  You my friend have experienced the ups, downs, and weirdness of benzos.  Along with their effects both on them and weaning off of them.  You have felt various symptoms during this time.  When all is said and done chemo is the same thing.  The process itself isn't anything to be scared of.  My first phase of round one I had a lovely and very cool nurse named Sarah.  I remember how scared I was and she laughed and smiled and said "you know once you experience getting chemo it's really anticlimactic.  Once you see how it's done you'll realize it's no big deal."  What happens is it's an unknown and none of us are used to hearing chemo in the same breath with feeling awesome!  It's just stuff that makes you feel like you have the flu for a short time and then it ends.  You're very familiar with this process already.  Even though my words might not help the nerves, if you can try not to worry too much. 

I hope you have a wonderful weekend despite the recovery process.  I will wish for you some happy moments . I'll be thinking of you...

[[Tr...]]

Just checking in to see how everybody's doing.  Hope you are all having some "Windows"

 

Have a great day!

[[Tr...]]

Where the heck is everybody?  Hopefully doing very well on their tapers!  I'm set to cut again on the same day as my thyroid biopsy.  I was thinking about waiting but the truth is I'be had a descent withdrawal period this past cut.  Maybe it's that I cut .0625 instead of .125 or maybe I'm just getting used to the symptoms...na probably not

 

Anyway I already cut my pills to get ready for my next .0625 cut which I'll start in 2 days.  I'll get some information on my thyroid about a week after the biopsy.  I also just had 2 biopsies done at the dermatologist and those results will be coming back on the same week as the thyroid...here's hoping for good results.

 

In the meantime I'm just plowing through life doing the best I can to be better, trying to create some calm in my life

 

I wish all of you well!

[[Ho...]]

Where the heck is everybody?  Hopefully doing very well on their tapers!  I'm set to cut again on the same day as my thyroid biopsy.  I was thinking about waiting but the truth is I'be had a descent withdrawal period this past cut.  Maybe it's that I cut .0625 instead of .125 or maybe I'm just getting used to the symptoms...na probably not

 

Anyway I already cut my pills to get ready for my next .0625 cut which I'll start in 2 days.  I'll get some information on my thyroid about a week after the biopsy.  I also just had 2 biopsies done at the dermatologist and those results will be coming back on the same week as the thyroid...here's hoping for good results.

 

In the meantime I'm just plowing through life doing the best I can to be better, trying to create some calm in my life

 

I wish all of you well!

 

I'm around!  Just still recovering and generally in a bad mood   Lots of muscle spasm in my chest for which I'm taking Robaxin on top of my Valium dose, which I have managed to hold steady.  I'm hoping the Robaxin is not a problem but I'm desperate for relief.  I was on Soma for the first week but that is apparently addictive and hits some GABA so I switched to the Robaxin which is like a light version of Soma and less addictive.  BestI can ell there is no GABA interaction but I can't prove it. It's been about 3 and a half weeks since the surgery.  Even though my dose has been steady, I got so many other drugs during and after surgery that now my withdrawal symptoms are ramping up, which I think is making my chest spasms worse. I woke up at 3 am this morning crying and shaking all over.  Going to try to call my psych and plastic surgeon Monday to see if they can help me out at all. I really don't want to go up on my V, but with the spasms I'm struggling to get range of motion back and have started physical therapy.  I see the oncologist Wednesday for my oncotype results (fingers crossed that will be done in time so we can say yes or no to chemo).  I miss the predictability of my taper.  These symptoms have been ramping up for a few days and I can't pinpoint the exact cause since I've had so many variables in the past few weeks.  If I have to start chemo, I really need to be more stable. And my most dreaded withdrawal symptom is back today, nausea and low appetite.  Grrrrrrr.  I was totally terrified surgery would do this to me

[[Tr...]]

Hi Hope,

 

Great to hear from you but it sucks that you're in pain!  It sounds like you are doing the right things over there with your meds.  Just remember that there's nothing wrong with being comfortable (or as close as possible to comfortable as you can get)!  I do believe there is a difference in how our bodies react to medicine if we need it compared to if we think we need it.  Meaning, if you're in pain and take pain medication vs not being in pain and taking pain medication I feel your body will respond differently to the same drug.  Don't suffer unnecessarily, you WILL be off these meds someday there's no doubt in my mind.  You just hit a road block that's all.

 

Being nauseous sucks there's no doubt about that!  It will pass Hope it will pass...hang tight

[[kc...]]

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.

[[kc...]]

Hey guys, I had my 6-month checkup today with my oncologist and wanted to report that my remission is stable. CA125 is low and pelvic exam normal.

 

And get this!! A couple of weeks ago I made a special appointment with him to bawl him out about putting me on Ativan and getting me hooked, and how I am now spending my precious remission time tapering slowly and dealing with crappy withdrawal symptoms. It felt good to get it off my shoulders, but I wasn't expecting anything to come of it.

 

But today he told me that he contacted my addiction specialist (I had given him his business card), they talked about benzos, and now he is having the addiction doc come to the Cancer Center to give a lecture and educate the staff about the dangers of prescribing benzos!

 

My oncologist told me that after learning more, he is committed to revamping the way the Cancer Center hands out benzos to anxious patients, and that he himself is no longer prescribing them to his patients unless he feels that their anxiety cannot be managed in any other way. He also gives them a lot more information about the possibility of dependence and withdrawal problems.

 

I'm pretty excited about this. I still have my own crappy taper to get through, but I may have helped many other cancer patients never get started on benzos at all. My oncologist even thanked me for coming to him and telling him about my trouble, and that he is determined to make a policy change after becoming more educated about this issue.

 

I made a difference today. 

 

Congrats on this, and good for your oncologist being open to learning about the risks of benzos and changing protocol. When  I told my oncologist about the difficulty in tapering off the Ativan she prescribed me for anxiety and sleeplessness during treatment, she just said I must be exceptionally sensitive to them. Argh!!!!