The site the link took me to was an invitation to join in on a conference call with several doctors, one of which was Dr. Shiffman (spelling ?). The call will include a discussion on lots of Hep C meds, including trial versions.
Thank you for posting this. I plan to listen in on the conference call. I will be seeing Dr. Shiffman in January, so I'm glad to know that he's involved in this, so that I don't have to educate him. :))
Dr. Shiffman is definitely an International leader in Hepatolgy and especially HCV research. That being said, don't expect more than a courtesy visit with him where HE will spell out your treatment plan. He doesn't strike me as being overly open to "outside" ideas. The nurse practitioners will be your lifeline and that is a good thing since they are an outstanding group. Unless you have major problems I wouldn't count on seing Dr. Shiffman very much after that unless you pass him in the hall.......LOL. VCU medical center is THE place to be to get cutting edge technology and the people there are fantastic, from the Doctors to the nurses to the parking attendants.
I feel like **** all the time, weak as hell too. My mind is in "Lala-Land" alot; more than normal. I got the RainMan, AADS blues! Food tastes like caca, music hurts my ears, I'm easily irritated, I hate bright lights, I can't sleep, when I can sleep I wake up 5-6 times a night to pee, I have serious skin problems, mouth sores, etc....in short life sucks...
...but the alternative sucks even more, so things aren't that bad. This isn't chemotherapy but it's as close as I ever want to be. 37 weeks to go; God willing they will pass quickly.
I'm very glad to hear all that. They had better treat you well, after you go to all the trouble to even get to the place. Have you been downtown lately? Construction everywhere, half the streets blocked off, what a mess! Actually, I don't even plan on treating right now. Since I'm a grade 3/stage 1, I'm hoping to wait, watch, and hold out for better tx drugs. But, I do want to have an established relationship with a competent hepatologist, just in case things take a turn for the worse, or I change my mind. I also want a second opinion on test results and bx slides. Took me four months to get this appt, and I'm working on my presentation and questions. Sure hope it's worth the wait. BTW, are you in the Richmond area? Do you know of any active support groups around here? Nice to meet you Petey. DJ
thanks for the link to the talk by dr. shiffman. even if investor focused, i'm sure i can learn quite a bit. perhaps one of you know, but i would like to know the difference between scherings two drugs - SCH7 and SCH503034 . that will be one of my questions.
thank you again.
You exactly described the symptoms I felt while on tx. Especially the music and bright lights bothering you. Every Friday night I would rent a movie and spend a very "quiet" night with my family. About five weeks after tx, one day in the car I turned up some rock-n-roll which was a sign the INF was wearing off. Hang in there, it will be over and you'll look back at this as just a shitty experience.
Snookman....my son and I hooked up with some really nice catfish last weekend...8-12 pounders.
Man, let the games begin!! When you where gearing up in line for your turn at tx, I told you it would be fun.. But seriously, it will get better. One week you will feel like ****, the next you won't. It seemed like my sx's came in cycles, and overall, the experience was quite doable.
Skin problems, mouthsores, hair? We prepared you for all this, did you buy all the products me and others suggested. Biotene mouthwash, or if serious, ask Doc for "magic" mouthwash. You can even gargle with warm water, with about a pinch of salt to help the sores heal. Also eat YOGURT! Hair, cut it short and use Nioxin.. Try to wash less often, but I found the shorter the better. Skin, break out thewm lotions, and also try oatmeal baths. Water shouldn't be too hot, but just warm enough to be comfortable. Also wash clothes in fragrance free soaps, and rinse twice. I did not get the rash as others talk about, but took all the precautions.
You can also drop about a half a cup of olive oil in the tub, as that will moisten up the skin, and keep you from drying out.
But overall, you gotta grit them teeth and know that your fighting this thing face to face. Whatever pain your in, know that dragon is in worse!! Tx is best described as a roller coaster ride..You have highs, you have lows, turns and dips...But the key is just to sit tight and wait for the ride to come to a complete stop.. It will man, and the ride is definately worth it!
Let us know how your week 12 labs turn out!! Maybe a few of the "oldies" will fill you in on the "undetectable" dance..
Thanks for writing that. I just read your post about "TX being like a roller coaster ride" and it was really inspirational. I'm on week 26/48 and I feel like ****. I think about giving up everyday and it made me feel good to read your post.
Thanks for your comments. What you said is pretty much what I expected in terms of MCV protocol. Years ago I worked at a teaching hospital in Dallas, so am familiar with the routine. I was originally seeing a GI and am sure I would have received adequate tx with him, but given the nature of this disease I really believe that it's best to be under the care of a team that specializes in HCV and is current on developing issues and trends. Being a relapser, it's good that you are seeing Shiffman, as I understand that that is one of his specialties. My hat is off to you for your perserverance and I wish you success in your continued treatment. It is not the interferon that causes me concern, it is the riba with its anemic sx and the length of time one must endure current tx regimens. I'm just plain scared of all that. I'm quite interested to hear what Shiffman has to say on the conference call. I'm hoping to get a sense of his perspective on the efficacy of VX950.
Again, very best wishes in your tx efforts. I will keep you in my thoughts & prayers. I hope you will keep in touch on this board. I'ts nice to have a "local friend". DJ
I also waited months to even get a return phone call from Dr. Shiffman. It wasn't until another doctor from MCV/VCU called on my behalf that I received a reply. I had gone as far as seeing another doctor outside of MCV to talk about treatment. I wound up waiting for Shiffman and treating there. I also went to him saying I was REALLY thinking of waiting for alternate treatments to come along and he said something along the lines of "Interferon will ALWAYS be the treatment of choice." Maybe since he is on the cutting edge of research that he sees how other things have failed. Since I was a stage 3 he "talked" me into taking treatment. I treated for 48 weeks and relapsed and am now on maintenance Tx, for about 10 months now. My viral load is below 100 and I am in a holding pattern I guess, trying to prevent further liver damage. The thing I have realized is that being under the care of the VCU doctors is all one needs. Like I said, you won't see a doctor after the first couple of visits anyway and whatever doctor is on staff the day you have a visit will be the name you see on your paperwork. What I am saying is, if you are under the care of ANY of the doctors there you will have the combined knowledge, thoughts and experience of EVERY doctor there. I am in the Richmond area and it is no harder for me to get to VCU than almost any other hospital. The construction has only re- routed the traffic slightly and it isn't bad at all. Good luck with everything.
I'm glad I found you guys. Dr.Shiffman is my Dr. I have not started tx yet. I still have to get an EKG, chest xray, & eye exam. I found out that I am a 1a last April. My Dr. referred me to MCV back than.
I live in Yorktown VA. maybe a little an hour away. Dr. Shiffman also has me going to Mc Guire for testing.
Since I have not started yet ALL advise might help.
sx means side effects unless you left out a letter and in that case it usually means a good time. :)
Welcome to the discussion group. No doctors here but plenty of advice and if you hang a bit you'll find a lot of it is conflicting -- which is good because it reflects the conflicting advice out there in the hep c medical community at large.
Your doctor has excellent credentials. That said, try and learn as much as possible about treatment so you can participate better in decisions and anticipate things.
For example, you know you're a genotype 1a but has he done a biopsy or other any other tests to determine how much liver damage you have? You should be aware that not every doctor thinks every hepatitis c patient needs treatment right now. The decision is complex but the degree of liver damage is an important component. You should at least understand as much as you can about the decision process.
Should you treat, one thing to discuss with your doctor is how soon and how agressively will he intervene with Procrit or Neupogen should you become anemic or develop Neutropenia (low neutrophil count). Another thing is to keep your own copies of all your blood tests.
Lastly, take your time and read through the other threads here and you'll probably find a lot of answers. Another good sites for basic info is the Janis and Friends Hepatitis C Support site. You should be able to "google" it easily.
Virginia Employment Comm.is telling me that I might not qualify for unemployment insurance.
I talked to a Lawyer yesterday he and is saying at best there is a 20% chance he could get my job back. I have been feeling real fatuged all the time and I have not started treatment yet.
Sorry to ramble on... but does any have any advise?
Thanks for your input. I have been doing my research about 5 mo.
now. I am geno tyoe 1a, viral count is over 8,000,000. I also had a liver biopsy a few months ago. My primary care Dr. referred me to a gastro Dr.he ordered a sonagram first,and than ordered by biopsy. After that he informed me that he could not treat me and referred me up to Dr. Shiffman.
On another topic...
In doing ALL of my planning before I decide if the IDEAL treatment study is for me. I told my employer that I might need to have treatment and plan how we could back me up in my work duties. My boss and his boss met and discussed the issues and they were real positive on helping me out. I left the meeting feeling that my job would be covered. We got HR involved because of the possible of needing to take FMLA. She was cool too, at first. She asked me just to keep her informed. She also wanted my Dr. to send her something that had the days off I would need to take off. MCV faxed her a letter from Dr. Shiffman office. About a week later I met my DM at one of my stores. I asked him how things were going and he said not good. We have to let you go. :-(
Now I do not have a job... No income... and now
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