Thank you again for this thread. I'm listening to every word.
'Abandoned' by the medical team post-tx is my feeling, too. They're so d-amn busy and overworked, so they pat us on the back, congratulate us, wave goodbye and put us out of their minds. And I know my nurse really cares about me.
Shutting the door on us makes sense from a triage point of view but leaves us high and dry.
Another April litter gal, checking in and feeling crummy,
Port
Thank YOU for sharing too. I totally understand what you are saying. The first week after EOT was absolutely dreadfully and doubly so cos I felt I had noone to talk to about this stuff, and I also felt like a loser cos noone else was sharing about the immediate post tx experience and I felt very alone. There were posts from people saying they were doing great after tx and yet I wasn't...
I was also on a natural hormone replacement prior to tx and also had to stop during and I couldn't tell if what was I experiencing was that kicking back in or something else. Like you I have ordered more, but it will take another week to get here AND then it takes about 3 weeks for it too work. That's going to be a long wait!
I was definitely anemic at EOT (9.7) and I thought that my hb would bounce back pretty quickly. It took 3 weeks for it come up .3 when I had my reduction so I thought it would move faster than that. Not so it seems... My GP is going to check my levels on a regular basis so that makes me feel better.
I also feel somewhat 'dumped' back in the real world - after 48 weeks of people (the clinic) being interested in what was going on, and checking my levels and texting me to see how things were going there is now no contact and no other appointment until 3 EOT. Definite abandonment issues coming, right at my weakest moments...
I have had to step down from a project at work that I really had my heart set on and had been working on for the past 3 months. It was supposed to mark my return as a fully contributing member of my department and I am gutted that I have had to pass it on to a colleague as I am physically unable to do what needs to be done. Standing and walking all day in native bush, trying to lead 50 people. I have no chance of standing for more than an hour without my legs going all weak, and I would be huffing and puffing as we go up and down dale, with a likelihood of fainting ...
Anyway, I don't want to wallow in self pity, it's just great to be able to share and to know that others are are experiencing the same. It is as you say, a great comfort.
Take care, Connie, we'll make it home again.
Thank you Epi for sharing I feel for you and wish you good health ASAP. As usual this forum is such a great informational and grounding place for me. No one else can understand this.
I have recently ended TX and found it to be tough because everyone esp. family expects you better immediately. You think your done and the tough part is over but it takes time. I thought I would go off meds and just not refill. Not a great idea. I was on some hormone replacement before TX for menopause hot flashes. I am sweating like crazy and I don't know if it is detox, menopause or humidity? It is really hard to tell what is causing what.
I have ordered a refill of that to sort it out but it will take a sweaty week. My husband has asked me about the meds esp. the AD (Prozac) even though he sees me depressed. I am not ready for that and want to taper one med a month or so to be able to decipher what is what. Once I forgot to refill the AD and was almost despondent. It is sad how many meds you end up on for the sides. It gets to the point where you just want some sleep or to feel better.
Now after TX I really want to feel better and it is frustrating. I have tried to run a little and have shin splints. I have started to go to Pilates again and it is so hard, painful and again sweaty. I used to be in good shape and run marathons now I am embarrassed to have my old exercise buddies see me struggle. I gained 30 #'s from lack of ex, Thyroid problems and anemia leaving me almost immobile. It is weird but I feel the 30lbs of fat is full of chemicals and I am sweating it out.
I have found my muscles are very rigid and tight like beef jerky from dehydration. So my back and body is kind of fragile trying to get back into shape. I knew mentally it would take a long time but emotionally it is hard. I started TX last year on my birthday 48 in May and my long term goal is to be fit by 50 again a year from now. I am hoping now that by next month I can make it up the stairs without getting winded. Sad but true.
I think I am still anemic. I was at EOT 3 weeks ago and they didn't want to give me any procrit hoping my body would replace RBC on its own. It is a long haul. I have a lab next week and see the doc in 2. Thank you all again for sharing it is a comfort and a learning experience.
Yeah, getting off the sleeping pills is a hassle. But it will happen in time. I think I took my last one about 2 months post-treatment. The riba didn't really wear off until 4-6 weeks after treatment. Then it took a while to get off the sleep meds. I'd say I got back to my pre-treatment baseline at about end-of-treatment plus three months.
It is too slow - I decided I could go back to the gym and then realised that paying $750 to drive to the gym, change, do 10 minutes slow muscle exercise once or twice a week and then change and go back to work was perhaps a little preemptive and probably costly. I ws puffing still when I got to the top of the gym stairs. I think we still have to be kind to ourselves. It is a little hard when friends and family have some sort of expectation perhaps that we are well now. I have decided I am going to take things easy for two months more - give myself a longer time limit and then re-assess.
The twitchy jerky thing is akin to heroin withdrawal but that can be over quicker than withdrawal from mothers little helpers - no way benign. All according to drug world gossip.
LaLa, thanks for the tips on food esp the banana and chamomile tea, yummmm. Now that there's no interferon causing me to get up in the night maybe it's safe to drink fluids right on bedtime!
Dragonslayer, please take it easy when you decide to stop your sleepers etc. I also thought I would be fine, never occurred to me otherwise! Also, I think the docs try to get us to stop too early. I would have preferred to not change anything until a month after eot or so, but it was my nurse who first suggested I stop them. Of course there are some folk who don't experience problems but I don't think there is anyway of foretelling who that might be...
Portann, good point there. It's so hard to know what is causing what and I think you are right; there are a multitude of things going on. Another good reason just to slowly change one thing at a time, the way Kristina and Jankar mentioned. I really didn't expect this to happen, all I was focused on was 'feeling good' again, no idea I was going to rear-ended like this. I had an awful of lot of joint and bone pain too for about 4 days eot, absolute agony. When my muscles started twitching and jerky autonomously I realized there was something else going on as well, and my eyebrows starting twitching by themselves, that was most freaky...
And I must be Ms Naive cos I had no idea coming off such a seemingly benign drug that had no 'wow' factor could be worse than heroin. I had always thought the 'down' was commensurate with the 'up' if you know what I mean... And how silly is this, I thought addiction was all in the mind. Another learning curve!
Anyway, I think I am starting to feel a little better, not so droopy and sad, and getting some sleep last night helped. And, once again, I'm readjusting my picture of life after tx, or recovery at least...
Thank you all for being here,
Epi xx
Thank you so much for your encouraging words. It really was a big shock to find myself in this place, I'm still getting my head around it. Damn it all, I just wanted life to go back to normal. I realize now I was over eager to get going and I recall at EOT on my last treatment I was much kinder to myself. Still not feeling great so going to try and get as much rest as poss. It also occurred to me that I don't think I had an uninterrupted nights sleep the whole of tx, so I guess a full system crash is to be expected....
My nurse said to taper of the AD's first - drop a half every two weeks. Well after the first drop and two weeks went by I am not dropping another ahlf yet - I might try at week 3. As for the sleeping pills - coming off the AD's I have found myself taking more to get to sleep! I now take 1.5 Zopliclone each night but at least I get a good sleep, although i am a little worried. My nurse said to drop the AD's first and then do the sleeping pills rather than doing the two at once.
I think it is well known that coming off these drugs is harder than heroin. You really need to taper slowly and judge it on how you are feeling. Marcia's idea is good - I dropped from 30 mg to 20 mg and was supposed to drop to 10 last Friday but my moods have been so swingy I needed a rest. I might consider dropping a quarter next Friday and see how that goes. I couldn't have survived the treatment without the helpers so don't beat yourself up, but we don't want to end up like those suburban housewives of the middle of last century - mothers little helpers that made them dependent for 30 years! Slow determination is the key I think - bit like treatment.
It is a bummer it takes as long to feel better as it did to feel really sick.
I'm so sorry you're going through this, Epi. I'm glad your doctor is taking good care of you. You WILL get to the other side of this. Just hang in there and be very focused on you right now ... you'll recover and you'll be able to move past it and enjoy life again. Just a step at a time still .. this is the recovery period. Take good care of yourself, Epi.
Trish
*big hugs Epi* hope you feel tons better, you're already on the other side of the finish line! i always tried to avoid extra medication, but still on at least 8 other pills/ day for thyroid, heart, etc. don't worry, 10weeks tapering will be over in no time! in the mean time, are you allowed to take food with those medications?
some foods to help sleep before bed: banana (mmm...), turkey sandwich, milk, or chamomile tea (ahh...). those are all foods that contain tryptophan (amino acid i believe) that causes sleepiness naturally!
heads up girl, a couple more weeks and we'll be congratulating you on your big SVR! in the meantime, take it easy and do what you gotta do to catch some Zzz...'s
huggles
I hope things are getting easier for you by now. That is so frightening. Not the same thing, I know, but I had a horrible time getting off dilaudid (hydromorphone) after cancer treatment and surgery. Like you I took the prescribed dose, but when I came home from hospital after surgery and wanted to get my head clear I stopped that drug, blithely assuming that I would be fine. After all, I had not been abusing the meds, just taking them as prescribed. It was terrifying - I had no idea my body had become dependent.
I hope you are getting some relief from the diazapam, and that you feel better soon. Thanks for the warning, I'm sure lots of people on tx have no idea how much trouble some of these rescue drugs can cause.
Be well,
jd
I'm so sorry to hear about what you are going through and hope you will feel better as of almost immediately.
I personally had no problems sleeping during tx. I was sleeping at least 10 hrs a day and sometimes up to 18. The first few weeks off tx, I had problems sleeping. Now I am getting back to a normal sleeping pattern.
As to stopping AD's, I halved the dose at first and was feeling irritable for a few days. I then decided to go very slowly on the tapering after that, by cutting the pills into smaller and smaller pieces. That worked great.
Lots of hugs, my friend. Much love, Marcia
I just want to again add to the mix that I'm having a couple of very unexpected miserable days post-tx with all the stupid old bone pain, etc., yet I was only ever on the interferon, riba and odd Tylenol during my 48 weeks.
That is to say, your withdrawal from the sleeping pills may only be a part of the picture.
I didn't take sleeping pills during tx and curiously, the only time I didn't sleep a wink was five days post-tx. A second wide-eyed experience like that would have had me running to the doc for a rescue pill, secondary problems with them or not. I felt like I'd never sleep again.
Anyway, you will work this out, too. I didn't expect this stuff to be happening to us post-tx, did you?
Epiphiny shares a good cautionary tale with all of us.
I dropped Celexa after 2 weeks, thinking that that was not long enough to have developed dependence and was wrong. Had a very miserable couple off days.
I'll confess that I am very resentful to have to take an addictive drug to handle the side effects of the treatment drugs that are saving my life. But what are you gonna do? Can't not sleep. Can't scream at everyone who comes near you. Thanks for the reminder not to stop the helper drugs cold turkey.
You bring up an important subject, one I never thought too much about until I started on Celexa a couple weeks ago. The low dose I found to work best for me keeps me calmer but not zombie-like. Sure better than the pronounced mood swings I was having. But there is trade off I see at the end of the road. It's kind of scary, but good to be aware of the potential problems in quitting.
Hope you feel better soon and can enjoy EOT to the max........Pam
You really should taper down off any benzo's to avoid all sort of problems....from seizures (if you are on a long time and a heavy dose) to not sleeping etc.
It is admirable to want to stop all the meds asap but sometimes it is counter productive to do so....
I still take my Ambien and want to stay on them forever - is there any way you could try a small dose of that for a few nights to help with the lack of sleep but not go back on a full dose of valium?
If you take benzos for 4 weeks at a regular dose you should be ok....but if you take them any longer you runa big rish of becoming violently physically wired to them....this is the idea...to keep yu on them by doing the weaning process which may take months or years.....its all about the almighty dollar
I stopped taking the Adivan after one week...i just needed them for a short time ...thats the safest way to do the benzos.... (short time)they are worst that heroin withdrawl and can kill you...funnu how my doc didn mention this
http://www.sntp.net/drugs/minor_tranquilizers.htm
Thanks for sharing that with us. I too am concerned since taking sleeping pills so long on treatment. My doctor has already told me that on my last appointment (May 11th) we will go over the weaning process for the Ambien and Xanax. I have or had a feeling like it is not going to be a big del for me, but I may be naive about it.
Good luck and keep us posted!
epi, sorry that you are going thru that, after all of everything else that goes with TX. I hope everything evens out for you.
port, I felt soooo bad after EOT and just couldn't figure out why but I guess it is the meds leaving and they couldn't leave fast enuff for me.
wishing great results for both of you and everyone else finishing up.
Denise
Hello Epi be easy with youselve on one of my treatments i stopped taking 4 mil lorezapam on last day of treatment and had 2 mild seizures.This time i have tapered over last 5 weeks and quit friday still dont feel right. Switching to diazapam is the way to go has a longer halfe life
Hi Epi,
Thanks for this insight into post-tx. I'm right behind you on day seven post-tx, never did take any rescue drugs during tx but had some of the worst side effects to date over the weekend. This is too confusing. Like you, I can't believe it's happening.
Have you had any sudden and inexplicable appearance of allergies?
OMG Epi, you poor thing. I'm 5 months post and just stopped the sleepers two weeks ago. I did, however, get a pill cutter from the chemist, and got myself down to quarter of a pill for some weeks (with the occasional day without). When I stopped I took paracetamol for about 4 nights (possibly a placebo?), and now I'm doing okay without.
Gently, gently girl. Rome wasn't built in a day and you've got the rest of your healthy life to come off the peripherals to tx. God bless and big hugs.... this is a real testing time for your patience (as if tx'g didn't test our patience enough). I personally, feel like getting my medal of honour from the Powers that Be for tx'g and instantaneous health served on a platter, but, for me anyway, it's going to be a long road and yet another marathon. So I'm strategising again, and doing it slow. It's frustrating, it's maddening, it's heartbreaking, and it's still better than tx'g. Love to you xxx