SS, 

Love your "way" with words and thoughts on things - I always enjoy your expoundings and info.

Seemed short (2 months), but kinda intensive (3 x's per week), and glad to know it helped some.

So, serum tac levels (at 5 mg per day) can feel like a lot eh? Good to know these things (I think so anyway), I file these things away for future reference, to acquaint myself with unfamiliar things, like on the other hand, about how these steroids you guys can also get (for a while anyway) can also make you "feel" a lot. I guess not just you guys who get these steroids, but many folk for whom steroids are part and parcel of their cure/therapy/maintenance. 

Anywho, I'm sure glad we have you wildly experienced folk, around us (and with us) in this world, to share your lives, experiences/wisdoms with us. Grateful for that and for you all, that's fer sure. Nice to know how grateful you are feeling about things too.  C. 

Well, isn't that a great attitude.  I applaud your consciousness and awareness. That's the silver lining.  That eluded me before EOT but I feel it more than ever now. You have been through a lot!

So, yeah, pull that silver lining around you and recline. Bask in your wisdom and the blue TV screen light.

Well done.

sailing shoes wrote:

---

Here's another bit of context - there's a consciousness, an awareness that I'm a survivor.  I survived HCV, HCC,and now a transplant.  Twenty years - almost 3 years of treatment, interferon, ribavirin, the wait list, the recovery.  Feels pretty damn good, Canuck.  Like everyone in Club Zero feels.  Worth every bit of the physical discomforts and maintenance requirements.

---

I am in awe of you sailing shoes! What an inspiration! Thank you so much for sharing your experience strength and hope with us

A'ight, Canuck,

Here's some day-to-day:

My knees hurt, balance sucked, and I was stumbling and falling down a lot. My PCP agreed to try rehab before sending me to the new-knee shop. So I went for 2 months, 3X per week, working on balance and core strength, gait, stretch ... good stuff, really. And it pretty much worked. Although I had/have no core strength, I don't stumble or fall anymore. My knees still hurt but they're functional. Apparently, I have not used any muscle groups not required for sitting and walking since the TP. Seems I've kinda coddled myself, while thinking I was steaming along, hiking in the park and biking in the basement.

I credit tacrolimus for the fatigue, dizziness, lack of progress in stamina and endurance. My dose (5mg/day) seems high as well as my serum levels. I'm anxious to talk to the doc next month and lobby for a dose reduction, hoping the dizziness eases.

In the larger context, life is normal. Ive been liver-centric for 20 years and that hasn't changed, but I'm on a longer tether than I was after the TP. We road tripped through Ontario a couple of weeks ago, along the Georgia Bay and Lake Huron, with our little doggie. Last month we flew to Arizona, with dog of course. We eat out when we want to and I don't feel restricted about guests or parties anymore. But I am always aware. Although I'm still liver-centric, my life isn't anymore.  That said, we are homebodies, always have been - my goal is to sit in my recliner and watch the tube in the evening, then go to bed early.  Right after taking my evening dose of tacrolimus.  

Here's another bit of context - there's a consciousness, an awareness that I'm a survivor.  I survived HCV, HCC,and now a transplant.  Twenty years - almost 3 years of treatment, interferon, ribavirin, the wait list, the recovery.  Feels pretty damn good, Canuck.  Like everyone in Club Zero feels.  Worth every bit of the physical discomforts and maintenance requirements.

Ya! I remember you turning us on to some info about that doc, and i did read up on him and his lovely wife, and the street they named after him! I found the info you gave us and his hx good to know, and was hoping Boxers and RC (and everybody) would find it interesting too! I sure like to know these things and how new ways come to be, just how medicine and R&D evolves. When ever I have turned a page or two trying to look something up about LT stuff, it always seems there is way more info available (that comes to the surface more easily) about kidney transplants!

How are you feeling BTW - in a day to day kinda way? - still keeping up the walking we see (as evidenced by your VIP, and dogs, park-meetings), I am sure Boxers and RC would want to compare physicalities, strength, energy and general stamina feelings with you - never mind hair - it's waaay too variable (as you point out in your particular fuzzy case!) hee hee. 

Do you think you feel tac sides? Perhaps people get sorta "used" to tac?

Don't be shy to to tell us (what you can) about your LT friend (without invading her privacy of course) - I (perhaps we) would be all ears. C.

Canuck

Dr Thomas Starzl, the liver transplant Poo Bah, said, when he was developing tacrolimus, that he expected fully 50% of recipients would be able to wean completely.  My buddy had a long, difficult trip with her TX in the first place, and to see her now ....  well, some people have enormous courage and grace.

great thread

Ah, SS, so you were maxed out on the cellcept after all (at 2 gms per day versus 1 gm per day). 

Your friend, the one you mentioned before, she interests me no end, with what being taken off ALL meds - oh boy, we could only hope this would be feasible/possible for everyone. This would be so good. I am so glad to hear about her, it must be good and promising to bump into her and hear her reports on how she is feeling/doing.  C.

Hi SS! 

I will always learn from you and Boxers and RC.

For those of us who are not familiar with anti-rejection drugs/immunosuppressant drugs in general ... the "CellCept" SS was on, and the "Myfortic" Boxers is on, are virtually (basically) the same thing - formulas of "mycophenolate". 

SS's "CellCept" apparently is more costly, and might have more GI sides, the Myfortic is less expensive, perhaps has less in certain sides, but I think there is a pretty good chance that both these formulas have no shortage of sides to put up with when you are required to take them. Both formulas mention similar sides, including possible alopecia (just like alopecia was mentioned in tac sides as well).

"CellCept" comes in different dosages (mg per pill) than "Myfortic". A rule of thumb (with either formulas, Cellcept or Myfortic) is that most people will not exceed a total daily dose of 2 gms per day (or 2000 mgs per day). CellCept comes in 500 mg pills so, should they deem you need the maximum 2 grams per day (or 2000 mgs per day), then you might be taking 2-500 mg pills in AM and 2-500 mg pills in the PM. Myfortic seems to come in 180mg/or 360mg pills.

So, according to SS's hx, he was getting a "CellCept" total daily dose of 1 gm per day - 1-500 mg pill in AM and 1-500 mg pill in the PM. 

And according to Boxers hx, she is getting a "Myfortic" total daily dose of about 1.44 gms per day - 4-180 mg pills in AM and 4-180 mg pills in the PM.

Neither of them taking the "up to" 2 grams per day. CellCept and Myfortic are very often, very purposefully given in tandem with other certain drugs post-transplant. The dose they decide on may be influenced and dependant on many factors. 

To say the least , apparently there is MUCH involved, and to know, about taking the required combinations of drugs needed after transplant, juggling and choices and such.

Neat SS, that your drugs have been reduced so. Just down to the tac maintenance now! Wow. Everybody must have different individual requirements, aside from just what different docs might believe, and what differing drugs they think they should use. C.

Thanks for the update, SS! Sounds very good to me. I’m so glad you’re here to keep our transplant members apprised of their progress and yours! Your knowledge is golden...

Hey Boxers

I was on 1000mg Mychophenolate (Cellcept), 500 mg twice a day, for most of the first year post TX.   It was discontinued abruptly when the docs were weaning me off Tacrolimus while ramping up Everolimus.  Creatinine was too high. My skin reacted badly to Everolimus and I went back to Taco but with no mychophenolate.  I'm now 23 months out and I'm still taking 5mg Tacro - 3AM/2PM - and no other immunosuppressives.  Creatinine has been stable at 1.1, Tacrolimus is holding at 5.3.

Too bad about your hair issues, but I'm glad everything else is looking good.  Its not fair, but I am a 71 year old balding man, and I see what looks suspiciously like new growth on my balding head.

Hang in there.  I have my 2-Year scans next month and I will update then.

Canuck wrote:

---

Hey Boxers,

...

I thought of you (and Hoodie) today as i was at a farm where a huge big beautiful male appaloosa was pacing about in his paddock. 

...

---

 Awww what a sweet thing to say Canuck. Beautiful image for Boxers to meditate on while making progress and healing and getting better and better

Hey Boxers,

Thanks for answering all my 20 questions! 

So, I was very glad to hear about your good interim labs, and, that you are managing to eat better now, and have gained that weight back, that weight loss thing was not a good starting point - so, good ALL is on track. Still, I'll be looking forward to hearing what these most recent labs are and the results of your Cat scan coming up.

Good to know what drugs you are still on and how much. I looked them up (several different ways), and I seem to see that the Myfortic dose is not THAT high (JUST high), a often normally-given high dose - but, I hear ya, about when are they going to start weaning your Myfortic down, you being at 5 months and they talking about (indicating) about a year from transplant - hard to say how much, how soon they intend to decrease the Myfortic.

They are the experts on this, and the ones "in the know" i am afraid. I wouldn't have a clue how and when they decide these things, but RC and SS have gone through all this weaning business, so we can see how they faired.

I am not sure how many sides you experience from ALL of these drugs, potentially there CAN BE a fair few to experience, AND alopecia seems to be listed on BOTH Tac and Myfortin! Depends on which thing you read whether alopecia is listed as a possible side for either tac or myfortic.

I read some other (kidney transplant) blogs as well who experienced similar hair loss and most seemed to have had reversal over time - another contributory causation i was NOT really thinking of prior, was just super-duper general anesthesia itself! - apparently those heavy duty drugs too and that mega unconsciousness (as stressors) can affect you in this way as well, and, there can be some time delay in the experience of hair loss in reaction to drugs, and, that there seems to be a time lag in recovery from the hair loss in relation to the drug ingestion - so, you may have to be patient.

Funky hair is no fun whatsoever. Have you already tried cutting it short? Just a thought.

I am so pleased you are back to normal weight - that early wgt loss disadvantage and lack of appetite you had experienced was bothering me - so I am very relieved to know you are good in that department now. How is everything else??  Are you sleeping OK? Are you finding too much or too little to do? Has your mind accepted what you have experienced and are going through yet, or does it still feel like a state of shock? Wondering if the "surreal" can lessen this quick.

I thought of you (and Hoodie) today as i was at a farm where a huge big beautiful male appaloosa was pacing about in his paddock. They also had 5 or 6 not fully growed steers a ways off and 10 littler pigs. Horse was very beautiful. The steer (I imagine) will taste good pretty soon?, and the little piglets looked so happy and cute, and probably delicious - the farm people informed us that "no" they do not give their meat animals names.  C.

Boxers, Sorry to hear about the hair, but very happy to hear about your continued progress.

Hey Boxers,

When I lost a lot of hair during treatment, my daughter bought me one of these hats. I'll loan it to you! Just in time for Halloween, too! I bet the neighbors would love it, lol! Hang in there, once you get some of these medications reduced or ended, things will improve. My hat always brings a chuckle when I get it back out of the closet. It hides all this gray hair that has started to show through!

Hi Boxers.  You are one tough cookie.  I missed what it is you are treating now.  I guess I got here late.  

About the hair thing - a friend of mine who beat breast cancer used to stop by my house after work.  On a hot summer day, she would come in, kick off her heels, remove her artificial breast, pull off her wig and plop them on the table. "Pardon me while I remove my accoutrements."  I so admired how well she owned herself and even more, how she approached her situation with a sense of humor.    

The wig is always optional.  You can plop it on the table any time you want.  Your hair may well come back even thicker, but in the meantime, why not make yourself look as good as you can.  You have enough to feel rough about without feeling self conscious.  When your hair comes back in, you can start with a cute short haircut, and treat your grow-out as a symbol of your comeback.  If you want to add some humor, you can name your temporary locks.  Maybe Goldie, or Loxie, or...  What's wrong with silly, anyway.  You don't need anybody's approval.  This is personal.

This, of course, is just my personal opinion. 

Leave it to me to talk about the cosmetic aspects.  I just don't know much about the medicines so I can only speak to what I have seen.

Keep up the fighting spirit, and when you pat the dogs, pat yourself on the back. You have already proved yourself an ardent survivor.

All the best from Cheddy here.

My labs have been amazing (knock on wood), as far as my weight, I gained it back to the point I have to watch what I eat. I don't eat a lot but I am not as active as I was. My hair thing is driving my crazy...the Tac. is known to cause hair loss, I am on 3mg am and 3 at pm. I am also on a very high dose of Myfortic 4 180mg pills am and 4 in pm. I still take a Bactrim in am and 5mg Norvasc. They plan on having me completely off Myfortic at one year, better start weaning soon at the dose I am taking. I am taking 5,000 mu of biotin and rogaine topical once a day to scalp, suppose to see something in 3-6 months, hard to hide this crazy hair. I actually started thinking about a wig, hope I don't get there, I think I would feel silly wearing a wig. Thank God I don't have to worry about going to work etc. I will post my newest labs as soon as I know them. Thanks for your concern!

congrats boxers and

good luck with the rogaine  

Hey boxers,

great to hear from you. Five months...whooo hooo yay 

I hope the rogaine helps your hair loss...what a drag for you. I agree with Canuck, dietary stuff might help...I know silica (trace mineral) helps with hair and nail growth but of course you should check with your Dr if you want to take it as a supplement...otherwise I think its in iceberg lettuce and a few other things... 

Thats great about your pumpkin... I once had one secretly wind its way up a blue spruce tree.... the little pumpkins poking out of the foliage all the way to the top... was like a Christmas tree of pumpkins...so funny.

Hi Boxers, Happy Anniversary and good to see you checking in. I recall you posted back a year ago when I was in Harvoni Treatment.  Maybe your hair is shedding as the seasons change? The Rogaine treatment will help I imagine. Give a gentle pat to your boxers. 

ps

Hi Boxers,

Thanks for the update! I’m so happy to hear you are continuing to do well, in spite of the hair loss. Let’s believe it’s just a temporary problems and will resolve on its own, once everything is stable and the various medication levels are consistent. I remember the pile of medication bottles RC had and now he has those down to just a few. I hope we hear from him soon as well. Last I heard, he was continuing to do well.

Let us know how things progress. You’re another one of our greatest success stories! We love your positive news!

Hi Boxers 

I'm guessing this is 5 months from transplant?  Congratulations, every day forward is great news!. The hair thing is concerning, what does the dr. have to say about that? My hair is fine in texture and I have been loosing some at an a alarming rate too,  but that began before treatment. Hope the rogaine helps. Good to see you pop in!

Blessings, Iris

Ah, there you are!  Real glad to hear from you.

Hm, too bad about the hair thing, don't know which of the drugs you are on /or have been on, that could have that particular side and be the sole cause of hair loss. In addition to any drugs causing this, all I know is that big-time hi-stress-karumba can also contribute to hair loss, as can just large jolting health changes, weight loss, dietary influences (at least i think so). These are heavy duty drugs you have been on, I don't know all of which ones you are still on, but we can look it up and see if alopecia is a side of any of them, maybe you have already asked your doc and he said it could be so (with the Tac?). They did OK the Rogaine treatment for you, didn't they? 1/3 of your hair sound like a lot! We would see this in the interferon/riba days. 

A couple of my friends on mega-chemo, lost all their hair, and it all grew back, one with more hair (thicker) than what she started with! Most of the interferon/riba and stress hair loss stories i have heard about around here seem to have improved over time after cure. But, I guess we will have to also check with the boys RC and SS to see how their "heads of hair" faired for comparative purposes, being that they had same stressors and drugs as you.

Losing hair is very disappointing, to say the least (for men or women), but, i think it may feel even more disappointing for women tho, I have experienced a bit of hair loss too! No rhyme or reason/excuse for it, no "familial" male pattern, or female pattern, or much of any kind of pattern baldness that runs in the family that would easily account for my generalized thinning and balding patch! I have only had very slow generalized thinning this last 5-10 years, (in retrospect I had chalked that up to general health and unknowingly packing HCV around for many decades), a kind of long-slow-roast health stress i was under. But the last year or two, just before i got diagnosed, and right after i got diagnosed, i really started to thin at a patch right dead center, middle of my forehead where my hair naturally parts at centre. That pee'd me off! It finally seems to have slowed down now (I think), I have lately started taking some supplements to "supposedly" help with hair follicle health (a little experiment-like) - nothing at all radical mind you.  Vanity is driving me to it.  

Let me know how the Rogaine works (please).

Ah ha - so it turned out to be a pumpkin (the mysterious giant gift of a viney thing that grew for you). My friend had a volunteer like that too this year and was surprised it turned out to be a zucchini, it got pretty big too. 

Long story, but no real garden bed for veggies this year for me, so ... i put some things in pots - I tried carrots in a pot (love carrots) - it kinda worked, tiny, but they tasted real good, better than none, altho the neighbour has gave me some carrots from his "real" garden.

Wow, it's your 5 month anniversary already, talk about time warp, things seeming long and/or short! This must be the weirdest time warp of all to experience (what you and RC and SS have done). What strong stuff people really are made of!, it always surprises and amazes me. 

I can't wait to hear of your most recent labs (just drawn) and upcoming CAT reports. What have some of your other labs been (since you posted your last ones) - how have the tac levels been - are they successfully being held at a nice certain low level - was it supposed to be right about at 5?

Have you gained all your weight back and are you eating well?? How are you feeling?? Your pal and ardent admirer, Twenty-Question-C. 

Well I will have my 5th anniversary tomorrow. All is going well with the exception of I am losing my hair at an alarming rate, got so desperate I started minoxidil (Rogaine) yesterday...scalp treatment. I have lost ~ 1/3 of my hair...ugh! I guess the Tac. can do that. Hopefully this is a temporary thing. Getting my labs tomorrow and my first CT the first of Nov. to check for any metastasis.  I am sure you all are getting ready for winter, except you lucky southerners. I had a huge unintended pumpkin patch that my horses planted for me...lol. Neighbors brought their church youth group over today to pick them...funny watching the kids standing on top of the "hill" little did they know they were standing on a manure pile. I hope all is going well with everyone. Hi to RC, fill me on your progress when you can. Happy Halloween!