Just a quick update: I think I've mentioned the MRI was read wrong and there is NO lymph node involvement, but I also got confirmation (from both MSKCC and John's Hopkins), that my dad's pathology is...
I believe it'll be Lupron and then during the months of radiation augmented with casodex. At least that was the protocol we were told by the RO @ MSKCC....
Hi All, Thanks for the guidance here. We pulled the trigger and will be starting treatment at MSKCC. Waiting for appointments, etc to get set up in the next couple of weeks. While we like the local...
Hi, Just looking for input on MSKCC experiences? As stated before, we are in NJ and are leaning towards radiation via triple play/MaxRT. I am leaning towards having all of it done through the MSKCC...
Just a quick update: Finally got the word that the MRI was amended to not include any lymph node involvement. So at this point, there will be no biopsies needed. I think my father has pretty much...
Thank you so much for this information....
Hi Dogdays, Can you let me know who your RO was in Middletown? We are meeting with Dr. Khan out of Middletown on Monday virtually. We live closer to Basking Ridge though, so I wasn't sure we'd end...
Just a quick update, really unreal to me....the enlarged lymph node was actually bowel/intestine. I couldn't believe a radiologist could make such a mistake. The only reason we even found out was we...
Thank you everyone for the kind words and great advice! Based on my dad's feedback, I am pretty certain we are going to go down the radiation route. I somehow need to convince the RO that even if my...
Hi Mumbo, How far apart was your RP from the RT? Can you talk about the recovery and what it entailed and how long it took? Thanks!...
Thank you for the replies so far! My dad is in remarkably good health - no diabetes, cholesterol, etc. He takes no prescription medications as of today. Outside of a hernia back in 1990, that was...
Hi All, I'm here for my dad who is 71 years young. He recently had a biopsy that came back positive with 7 cores positive [3 on the right side that were 6's (3+3's), and then 3 on the left side that...
Levi, you should get a copy of your results to see exactly what your #s were....if you are above 250 pmol of the 6-TGN levels, you wouldn't need the allopurinol (I don't think). I am actually a...
Levi, Being low on the metabolite level is not a good thing, unless you are talking about a different test - the TMPT enzymes (in which I think being low is still not good). The metabolite level...
So, shouldn't he be ordering the prometheus metabolite testing to see if you are even in the therapeutic levels of the 6-MP?! I think 4.5 months is plenty of time for the 6-MP to kick in...you just...
Levi, Did you ask the doctor why he thinks you haven't failed 6-MP? Are you not in the therapeutic range? Have you not given it enough time?...
It's available in the US...I've used Quest Diagnostics several times to get an idea of calprotectin inflammation levels (and it was covered by insurance...but GI didn't use the UC dx code because...
Or the drug is working too well....Imuran can cause your WBC to drop....but as you mentioned, so can a virus or some other thing...I guess you can re-visit after the scope based on if you really have...
Hi Sibby, I dont remember your whole back story, but why not just lower the Imuran instead of stopping it totally?...
The TPMT test is definitely NOT a must. Remember, it's a fairly newish test and obviously the meds are not. However, as stated above, most competent doctors DO order it before starting their...
Does anyone know if Canasa is also helpful for Hemorrhoids? I know the benefits it has for proctitis, but just curious if anyone still has hemorrhoid type blood while on Canasa?...
Levi, Here's the problem to that driving rebuttal argument. Everyone, at some point in their lifetime, WILL use healthcare. There is just no way around this. Not everyone in their lifetime MUST...
Interesting study on 2G of curcumin taken per day: http://www.empowher.com/inflammatory-bowel-disease/content/inflammatory-bowel-disease-alternatives-plus-conventional-drugs-m?page=0,0 I've been...
Interesting theories Malkavian...but you know I always wondered why this was a disease of young adults primarily. Meaning, I am sure we all have had GI infections as kids, but for the most part the...
Sherry - that's right. When I accidently opened up the brand name tablet once, it was full of yellow powder....
I think AZYooper meant the contents of the capsules, not the capsules themselves (they are 100% different). I notice the darker urine even with the brand name Colazal...too soon to tell with the...
OldHat - hmmm....why is the calprotectin test literal bs? I don't think it's perfect, but I am reading more and more clinical trial data out there that proves it does help. It's not the end all, be...
Not that I know of Sherry - it's just the brand name that was being made by Salix that was/is in question. The other 2 generics have different manufacturers (Mylan and Roxanne) and there has been no...
Hi AZYooper, My issue is this: Based on my Oct. 2011 scope, I have 0 rectal or sigmoid inflammation thanks to Canasa + Rowasa. I have 0 right sided or transverse colon disease (not even via biopsies...
Hi Old Hat, I notice that if I take high doses (only of the oral) 5-ASA's, I get diarrhea. Even though I am taking 10 pills, it only amounts to ~3 g of mesalamine and this is sort of my threshold of...
Yeah I am sure....I mean if you're using 9 pills of Colazal, you're gonna now need to take 6 pills of Giazo....big whoopty doo!...
Hi Old Hat, Does that mean Salix will no longer manufacture the brand name Colazal? Also pretty sure it's 1.1g of balsalazide disodium, not mesalamine (although the bacteria in our colon covert it)...
I am thinking the fatigue is from the Imuran. Most people say it passes and taking it at night helps one sleep through the symptoms. The symptoms in regards to mucus and abdominal pain are probably...
Well I am now down to 3-4 days of brand name Colazal. I called the 1-800 Salix number specified in an earlier post and was told that Colazal should be available "sometime in March". I asked if that...
I shot you an e-mail as well....
I believe I was on INH, but I was 10 at the time, so I don't remember much. I can ask my parents if you need me to....
Was doing some research and there appears to be a new TB blood test that might help? Something to research... "TB blood tests (interferon-gamma release assays or IGRAs), unlike the TB skin tests, are...
I had the same issue when I was a kid - positive mantu (sp) test but negative chest x-ray about 8 yrs after I got the BCG vaccine as a baby. I got put on abx just in case for 9 months as well. At...
Ask for a PCR C Diff stool test if you haven't gotten it already. Please make sure it's PCR and also make sure your insurance covers it (it should). The older C Diff tests have too many false...
bump...
Can you e-mail me? I wanted to ask you a question about the doctor you use as I believe it's the same as me. Thanks....
Not a problem....the decision is difficult, but must be made by everyone on their own. I was hoping the webcast would provide you the facts you needed so that you could do so and it sounds like it...
I think the choice is extremely difficult.... Biologics alone are probably safer than the immunosuppressants, but the medical community isn't quite sure because of the fact that they haven't been...
Hi, I came across this the other day and I think it's a worthwhile watch for you: http://www.ibdcme.tv/programming_guide/topics/Treatment_of_IBD_in_Pregnancy/index.cfm Even if you don't understand...
Old Hat - what is a stool conditioner? I have never heard of that term before......
I e-mailed someone at Salix directly and was told that Salix has officially discontinued manufacturing Colazal. Our only options at this point is to go to the generic and as already stated...
I finally had some time to call around.....and unfortunately didn't get many answers. The Salix # off of the website sent me to a rude lady who said Colazal was back ordered, but definitely not...
I have a couple on my arms - it is hereditary in my case, as my uncle has the same thing. There are real small and not even noticeable. In the US, removing them is a plastic "cosmetic" procedure, so...
You misheard the doctor if what you say is true - google lipomas (not lymphomas)....
From all the studies I have read, curcumin is the active ingredient that has the proven anti-inflammatory effects in UC. So make sure you read the label and identify that the supplement you take...