6 mo post PCR UND!

Hello everyone!

There is always room for good news on this board so I am sharing mine.  At 6 mo post tx, I am und!  yippee!!!!  If not for this board, I am not so sure I could have finished as compliantly as I did.  I am feeling better every day but still have some lingering things happening that I won't spoil a "good news thread" with.

FYI:  Geno 1B, beg VL 4 mil, BX 3 inflamation (inflammation), stage 2, infected approx 38 years.  Cryo positive but negative EOT.  

You all rock!  Thank you from the bottom of my heart for all the times I came whining and you picked me up.  

Hang in there all those on tx!  It really does work!

miss

[sfbaygirl]

Congrats!!! That is such wonderful news! I remember how much you suffered and now at least you can feel it was worth some of that suffering. Are you still dealing with the numbness?  

Thanks for the great news and all your help during the fire. I just posted below about it. Good news is so much better!

[Myown]

WOW!!! So happy for you!!! Such good news!!!!!!!!!!!!!!!!

[mikesimon]

Congratulations on your news. Good luck. Mike

[chellski]

its hard to believe while you're going thru tx that one day you will actually be thankful you did it!  congrats on your good news...

[cajunlady]

CONGRADULATIONS!!!!!!!!!!!!!!!!  YOU GO!!!!!!!!!!!!!!

I am so glad to hear of UND on POST TX.  Enjoy your days and life ahead of you.

HAVE A GREAT WEEKEND!!!!!!!!!!!!

Cajun

[MissMiss]

Thank you all!  

I gotta say sorry for not following up with a few of you a couple weeks ago.  I had just posted how I hadn't gotten the flu or a cold after tx.  Then, wham!  I got knocked down, drug into the woods and had my booty kicked real good!  103+ fever, etc.  Missed a good week of work and thank goodness for spring break or I would have missed more work!  Then, had to take a short trip and, well, we're this close, why not an overnighter at the beach!  

Then I broke a tooth in half.  So, a soft diet for several weeks, can't see a dentist for another week.  Good thing the flu turned to bronchitis and I am on antibiotic or I probly would have an absess (abscess) by next week.  

But, I am undetectable and feel on top of the world!  

Thank you all again!

miss

[compulsive]

Wow - UND  is GREAT!

I can tell your REALLy excited - 'cause your cheerful about a broken tooth and  flu turning into bronchitis !

Sounds like things are getting better for you  and I hope they continue to improve - after you get that tooth fixed!

[ChrisDDD]

First of all, congratulations!  By any chance, were you on VX-950?

[wyntre9]

"There is always room for good news on this board so I am sharing mine."

You've got that one right!

I'm so happy for you.  Congratulations.

[goldyn]

That is the greatest news to hear ..congratulations......

[jmjm530]

What wonderful news! So very happy for you.

Best regards,

-- Jim

[Cindy10]

Thats awesome, I am really happy for you!!

[Maui lover]

EXCELLENT news, congrats!!!!  Now I'm hungry for enchiladas....

[Eisbein]

Hi missy
Somebody screached in my answering machine...undetected...got some slight hearing loss now.
This battle is behind you...enjoy the honeymoon.
Later you can join me in earnest and we tackle the post tx stuff.

Ina

[jmjm530]

Not to take up too much room in MissMiss' celebratory party, I'll open a new thread here regarding skin issues.

Be well,

-- Jim

[aquarius64]

excellent news!  congrats and i hope things continue well for you!

[Mister beagle bailey]

Congratulations!!!  This is great news and now you can get on with the rest of your life.

Beagle

[MissMiss]

Thank you all for sharing in my party!  I wish I could have such a good reason every week to bring up the spirits of all txing.  

Chris, I tx'd with regular Peg and Riba, with Neupogen and lots of Procrit.  Even a couple Neumega, although I advise against the Neumega if at all possible.  

Back to the party!  I'd like to make a huge batch of my chicken enchiladas to share with you all!  Can you smell it through cyber air yet?  lol  Ooops, gotta wait til I get this tooth fixed.  Okay, can you say raincheck?  lol

Everyone have a great weekend!

miss

[l-horn]

Excellant news, excellant news. Keep it up !!!

[ladybug52]

Congratulations and thanks for the cheerful post. You have me craving enchiladas now too! Nice to know that you cleared the cryo, is that what negative at EOT means? Also what is Neumega? Have a great life post tx!

[MissMiss]

Yes, negative cryo at end of tx.  I wish I had had it typed because I am RA negative, which leaves some area of doubt that it was only from the HCV.  Time will tell I guess.

Neumega is used for low platelets.  But, it dropped my hgb about 2.5 points to 7.4 in about ten days with a fever of around 103.  It took a lot of effort and an awful low of Procrit to finish the last couple months of tx.  As it turned out, after the lab confirmed my platelets, I didn't need to take the darn stuff.  

Yes, enchiladas do sound good.  When I make them, I always have to make at least two large lasagna pans, just to have some for the next day!  

Thanks again!  Still flying high on my honeymoon as Ina says, lol.

miss

[aiuta]

Congrats!  You just made my evening, and, as a fellow 1B, you've given me hope.  All my best, Aiuta

[Eisbein]

Hello, long time no talk.
Can't find a thread on skin stuff, but probably have nothing much to contribute.
Rosacea is 95% gone.
The V-beam for the entire face costs $350, a sample patch of about a square inch $100.
I wanted to do this in January, but decided to wait till fall. I am still getting those tiny little pus pimples, which is simply an inability to fight off normal skin bacteria. Once those are gone, I'll proceed with the laser. They have to scrub the face with with alcohol, no amount of oils are allowed to be left, and alcohol and my facial skin still don't get along. Also one has to avoid sun completely for 2 weeks.
I am an expert at avoiding the sun, but everything points to fall being a better timing.
Guess what, I am using some of your protocols now.
Eucerin Redness Relief was great during the Rosacea phase, but with that being behind me, I swithed to your beloved Cetaphil Gentle Skin Cleanser. Can't bring myself to just wipe it off though, got to use water.
And yeah, I am using Cetaphil cream too.
Still have seborrheic dermatitis, nothing helps, but a long shot from last summer.

Voila, the year of the "Skin", has somewhat past.

I am still getting different little rashes over my body, nothing earth shaking, but keeping the Dermatologist busy.

I couldn't read any posts for almost 2 weeks. Med help finally fixed the issue, at least I can read with Explorer, still not with Netscape.
When I played catch up, I saw a post of yours about testosterone. I would think your DHEA would be low too, you got any numbers for me.
I don't know if you remember, but my DHEA and testosterone tanked.
I am supplementing with DHEA, but unfortunately none converted into testosterone for me. Man usually convert it better.
If that does not do the trick for you, you can add Pregnenolone, all natural remedies.

Pregnenolone---DHEA----Testosterone.

That does not work, Testosterone cream, that does not work oral testosterone or injections.I know you are hesitant because of the liver, me too, but I will go for the cream in my case, it's very well absorbed through the skin.
Cutis Pharmaceutical..First Testosterone. If the dosage is too small for you, a compounding pharmacy can mix it for you.

I told you, tx is messing with our hormones big time.

Fighting my way through post tx, one day at a time.

Ina

  

[jmjm530]

Hi Ina, good to hear from you and that your rosacea is mostly gone.

As you know, roscea presents itself differently on each person, and the choice of which laser to treat with reflects that. I forgot exactly what sort of laser V-beam is, but here is what my doctor recommended:

5-6 treatments of IPL for face using Syneron E-Light at $750 per treatment for face. Alternatively, they offer the KTP Gemini Laser for 3 treatments at $2,500 per treatment, and may need up to 3 treatments, OUCH! As it was explained, IPL (not a true laser) is more for facial redness/flushing and fine veins while the Gemini laser can remove the larger veins. Recommendation was to go with IPL and then re-evaluate when finished to see if any Gemini treatments are necessary. I also came to the same conclusion that best wait until Fall when I won't have to deal with the sun issue, even though the doc says they treat all year long with no problem.

Happy the Cetaphil products are working for you. I only used the no-water approach when things were extremely sensitive. Since then I use Cetaphil with water as I would a normal soap. You might also want to try their moisturizing lotion with SPF 15 during the day. Also, as you skin calms down, you can switch from Cetaphil Cream to Cetaphil Moisturizer which is cosmetically absorbed a little better.

As to your tiny pus pimples, I'll offer two suggestions. If they're from classical rosacea, or any form of acne, try OTC Rezamid. Been around awhile but your druggist still may have to order it or you can get it on the web. My derm recommended it. Also, Metrogel, but for some reason you don't like it. You also might try Clindamycin.

My current protocol is Clindamycin in the morning or whenever I feel anything start to itch. Then I alternate Metrogel and Rezamid in the evenings on nose or wherever any redness. Then Elidel Cream if any flaking from the seb derm, or sometimes I just use the Elidel over the Metrogel if in the mood. According to my derm, all three are harmless in terms of side effects. That was the original plan but now I'm more flexible and will use the Rezamid any time I see a pimple forming. My suggestion is you at least try the Rezamid and it also has the benefit of a slight tint which should cover up anything underneath. Thought you had tried Clindamycin, but if not, worth getting it.

My rosacea situation is better but not as resolved as your seems to be. I have been able to build up an exercise tolerance which is good but being in a sauna for anything longer than five minutes will bring problems. So I still am apprehensive about the upcoming summer. I've been in a chlorinated pool a dozen or so times with no problems. Also, food triggers, including spicy foods, caffeine and red wine do not seem much of a problem. Still, some redness in middle of face. Not anything that people would stare at, but I'd prefer it gone and therefore am also looking into lasers.

Took the Testosterone test again and it's in the normal range. It probably was something as simple as I took the first test in the afternoon and the second (normal) test in the morning. According to my doctor, Testosterone should be tested in the morning when it's highest. So probably can put that to rest. Don't think I've been tested for DHEA, is it part of some sort of panel? What will it tell me and do you have the exact test name from Quest?

Skin aside, I've upped my exercise program and doing 40-60 minutes of cardio a day plus regular weight training. Bench press is back to pre-tx levels. Other than that, I've lost of alot of motivation. Treatment put me in a very deep hole of nothingness for a long time and difficult to climb out out of. Not depressed, just not excited about very much. The other issue is what may be IBS although hard to get a diagnosis especially because I avoid doctors and tests these days. LOL. But I am having some mild discomfort and frequency plus abdomen appears bloated. It's possible that my weight gain after treatment redistributed my fat more in the abdomen, but I think it's more than that. I'm going to lose around ten pounds and then I'll know for sure. Cholesterol profile is also worse than before treatment so I'm playing around with diet some but will probably end up on a statin soon. Doctor now admits that treatment can screw up the metabolic syndrome. Interesting how all these things are mentioned AFTER treatment. LOL.

That's about it. As you have noticed, we have two forums now with unlimited posts, so if you want to continue the skin thread, you can open up a new one or keep posting here, or find one several pages back like before. I only mention the latter because the new Community Forum which started out so nice has now turned into a Zoo and not sure how often I want to log into it anymore.

All the best and do check out the lasers I've mentioned both for yourself and to give me more feedback.

Be well,

-- Jim  

[jmjm530]

I said if things calm down you could switch from Cetaphil Cream to Cetaphil Moisturizer -- I mean switch to Cetaphil Lotion which absorbs more completely but may have some alcohol or something. I use that during the day if no sun and the lotion with spf 15 if sun. In the summer, I'll probably have to go with one of the heavy gun zinc/titanium blocks if I'm to play sports outside. Just thinking out loud, maybe I should try and extend the sauna a minute or so each day to see if I can build up a heat tolerance. Don't think it will work, but if I do it very gradually hopefully no harm. In fact, maybe you can test the theory for me, then def no harm. LOL.

-- Jim

[Eisbein]

you said:
Other than that, I've lost of alot of motivation. Treatment put me in a very deep hole of nothingness for a long time and difficult to climb out out of. Not depressed, just not excited about very much.

You have no idea how I can relate to that. Can't climb out of it either. Never had anything remotely like that happening to me.
In my case a low level depression is also at work.
Since I am on a gluten free diet, my gut had time to heal, and I have been able to slowly up the dosages of Lexapro.
I hope that between Lexapro and DHEA I find my old self.

The test for DHEA is called just that, DHEA. I don't use Quest for that, but our local lab.
DHEA declines with age, but mine is abnormally low. My cardiology big shot is for supplementation, as well as my endocrinologist.
Google DHEA, it's relationship to cortisol, testosterone, mental well being, depression, sleep, etc. etc.

Those little pus pimples are the size of a pinhead. They don't itch, and they are not rosacea related. Right now I got a flare, about 8 of them. Metrogel does not help here, only antibiotic ointments.

My gut problems started after my first tx in 2001. They couldn't find anything. Things got awful during my 2nd tx, and finally last fall I insisted on every test in the book. A small bowel study revealed changes compatible with Celiac disease. The genetic test said no Celiac. I went for 24 hours on a gluten free diet, and was stunned at the immediate results. That's it for me, gluten free diet for life. No more nothing, perfect intestines now.
Celiac in adults is frequently brought on after severe trauma, stress, physical illness.
Never crossed my mind this could happen to me, I could eat anything, and I am not allergic to anything otherwise.
Don't cross food allergies of your calender.

Got to go, hubby is getting a pacemaker tomorrow morning.

Ina

PS I'll come back to the laser.