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Post Info TOPIC: Bad Mt Sinai Update
mallani


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RE: Bad Mt Sinai Update
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Hi Laura,

That all sounds good and you seem to be in good hands. Best wishes for the future and keep us informed. Cheers.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Cinnamon Girl


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Hi Laura, good to hear from you again, thanks for the update.   I`m so glad things are going well for Tom, this is good progress and it`s great to hear that he is feeling and looking good.   It makes sense about the plavix, and it must be so reassuring for you both that all the doctors involved are communicating with each other and keeping you informed.  Tom is clearly getting the best care and attention and you must be so relieved that things are moving forward now at last. 

Best of luck with the next appointment at Mt Sinai on 22nd of next month, keep in touch. smile

Take care, all the best, Jill

 



__________________

Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
tomyboy


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HI all, just thought I would give you all the latest update. Took Tom to Columbia NY Presbyterian last Wednesday for his angioplasty. I liked the fact that before hand, ALL doctors consulted about what they needed to do in order for Tom to have the tumor removed.  Tom ended out recieving one stent (non-coated, which Mt Sinai asked to use if one was needed) as he had a 95% block in artery.  He also had two other blocks but dr didn't stent them as they don't want Tom to have to be on plavix long so he can have the liver surgery.  He is doing well, although he reports he doesn't feel any different.  Friends say it may take time for the blood to realize it has a clear path now. Anyway, we go back to Mt Sinai on 4/22 for a CT liver scan and see the surgeon after.  He will see if there was any growth.  Hopefully not.  Mt Sinai called him after his stent was implanted to see how was doing and to inform us on what would be happening from here.  They believe he will need to be on plavix at least six weeks, and will need to be off of it for six weeks before he can have the surgery.  We think they will want to remove the tumor the end of May or beginning of June.  The sooner the better.  We should know more after our appt on 4/22.  All in all, he feels good and looks good.  I sense he is still scared as he wants the tumor out.  Mt Sinai said they aren't going to do chemo or radiation yet, as NY hospital used non -coated vs coated stent, hence, him not having to take plavix as long.   I just want to thank you all for your thoughts and opinions.  He has a long road ahead of him and just think, next year, hopefully he will be able to start treatment (pill form only) to beat his hep c.  Dr's say he is lucky to even be able to have the liver tumor removed, as many people with his diagnosis and stage of cirohhis aren't able to have this completed as their liver isn't functioning well enough.  I say it is all the 15 plus years he has tried all different treatments that his liver is still functioning.  And am grateful he can have this.  Hope all of your journey's, treatments with little side effects have been going well.  Wishing everyone the best, and thanks for listening...and Bill, FYI- we liked the  Columbia NY Pres/ hospital, staff, dr, and nursing staff.  You chose a good hospital to be treated......Laura and Tom



-- Edited by tomyboy on Wednesday 13th of March 2013 05:32:31 PM

__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Bills


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Laura & Tom

So sorry I will pray as well

To get right to point Tom is a real fighter and your in his corner. I'm sure we will be hearing more and trying to be optimistic all good news too. As MJ said one foot at time God bless You and Tom. By the way I live in NJ and go to Cornell 70th street. Sounds like your doctor's are in one place as it in Cornell. It was so much easier for me they all trade info test  and insurance info.  By the way  It's OK to priv message me if you want?

BillS  



-- Edited by Bills on Friday 1st of March 2013 12:52:25 AM

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Bills

Harvoni started 12-12-14 for 24 wks PrevTX Geno 1 stage 3 cirrhosis - non resp Int/ ribv. Started Trial  in Aug 2011 -July 2012 into Incivek relapsed  Feb 2013 Had 72 weeks on interferon & Riba.

tomyboy


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I believe you are all right. Very grateful to hear everyone' s wisdom and advise these subjects.  It appears many of us experience similar circumstances or know someone who has.  Tom reports to all of his latest newest physicians, that even though they are taking care of all these medical issues, long story short, "I still have hep C".  Aint it the truth.  Still praying for some medicine with less side effects and which can be tolerated by everyone but especially for geno type 1.  they say Tom's liver is still functioning, thanks to all these past 10 - 12 years he has tried all the latest treatment but just didnt beat it.  Hopefully new pills will be approved next year and he will be well enough to start again.  Thanks again, and I will continue to visit from time to time.  I sometimes wonder while we are in NYC waiting at the hospital, if any of the people waiting may be some of you from the site.  We have met some amazing ppl, mostly liver transplant recipiants. God bless and good luck to all of you!!!



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Northern


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They will be able to into the left brach art in the arm to place the stent. Much easier on the patient most of the time. Good luck.

 



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1b, 3rd time around on treatment. Stage IV cirr. Undetectable at 8 weeks with Incviek. Been infected since the late 70s. 48wk treatment completed. Sustained undetectable. 
tomyboy


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Thanks for the response. Many friends have put my mind at ease.  Just found out, he is getting stent next Wed at NY Presbeterian. They cannot do this locally tomorrow as we hit another road block. Two years ago Tom had a femor by pass done on his right to left leg.  His right leg now feeds his left leg.  He had three blocks on the leg they couldn't balloon.  They won't be able to go through his groin now.  The block is the main artery on the left side.  We are ok this going to the city again as now we understand.  Liver dr here concerned with him having to take blood thinners for a period of time.  He doesn't want Tom to have to wait too long to have the tumor removed.  Right now, I just am now taking one thing at a time.  Now you have me a little worried about the growth. At least we go back in April for another CT Scan to compare.  You have been great and thank you.......smile



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

mallani


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Hi Laura,

Let's deal with the heart first. I assume the 'coratic' artery is the coronary artery. Tom has obviously had a previous angioplasty to repair partial blockages. He needs another one to unblock some other narrow areas. This is easy and you will get this done by his Cardiologist before you go back to Mt. Sinai. Not sure what you mean about a ventricle being 'clogged'. You must have misheard this, as a clogged ventricle is full of blood clot and he would not have been allowed to go home with this.

Back to the liver. Tom has a single, 10 mm lesion in the liver periphery. The Mt Sinai Radiologist thinks this is HCC (HepatoCellular Carcinoma) but until a Pathologist examines it under a microscope, nobody can be 100% sure. It sounds easy to resect, after Tom's heart problems are dealt with. Rate of growth of a solitary HCC is difficult to predict- some growth may occur, but it would take at least 3 months to double in size. So, when Tom returns to Mt Sinai, the lesion may measure 20 mm (at the worst), so there is no need to worry. Cheers.

 



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Mary Jane


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Laura hugs to you and your hubby..  my goodness when it rains it pours.. I'm not a medical person but from the all the info you posted, I'd agree you have to take care of the ticker before you do anything else.. good doctors are a must & it sounds like they care.. prayers to you and Tom...one foot in front of the other.. all the best MJ



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Do not go where the path may lead, go instead where there is no path and leave a trail.Ralph Waldo Emerson

1a - VL 22 million  F2- IL28B- CT / Inck-Riba- Peg triple therapy 9/15/12 UND 4/8/14  8 wks BT ..3/1/2013 done! 3wks Post UND
Biggyb


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Gotta trust the doctors. If we can't trust them who do we trust.



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
tomyboy


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We went back to Mt Sinai yesterday.  Last Wed Tom phoned his cardiologist here to inquire about his clearance letter.  His receptionist called back a half an hour later reporting Dr wanted to see him on Friday.  His office was closed Thursday.  Long story short, we went to see him on Friday and he reported that Tom's ventricle was clogged.  He had his left coratic artery cleared two years ago and was told there was some blockage lower but not to worry about it just yet.  He wanted to know how long the liver surgery would be and we said the surgeon couldn't determine until he got inside on the table. We thought Mt Sinai would take the cancerous tumor out regardless andhe told us to still go to Mt Sinai for pre surgical appt and he gave us his cell number and told us to ask Mt Sinai surgeon to call him.  We went to the appt, informed team of what cardiologist upstate said, and he called him.  When they took tom's pressure, his right side wasfine but his left side read 75 over 50. Surgeon came in told us he reviewed his bone and ct scan and that they were good. Huge relief on my part as I feared the cancerous tumor came from somewhere else.  After Mt Sinai spoke with cardiologist here, they told us there wasn't an anthesiologist who would touch him and that his heart issue had to addressed first.  I was  a little concerned about this but dr explained he didn't feel tom's heart could take the stress of surgery.  I asked about him having chemo or radiation.  He said he didn't want to do anything now.  I asked if it could grow by leaving it. The surgeon said the tumor is one centimeter and he felt it wouldn't grow but he couldn't guarenteed it. He reports when tumors are three centimeters or larger, that is when they really tend to grow.   They would monitor closely.  Tom goes back in april for another liver CT scan and we see dr immediately after and they will review scan with us and compare.  A kittle scared but it sounded right to us. Does it to everyone here?  should we be worried?  Tom see's cardiologist here today and they want to angioplasty tomorrow.  I am hoping he heals quick from this and can have the liver tumor removed possibly in three to four months.  Like I always say, tom tends to get dealt bad cards.  Another road block he must endure.  Please let me know what you all think, remember he still has cirohhis stage 4 from hep c but they say his liver is functioning.  Did more blood work before we left, not sure what his viral load is now.  Please let me know your thoughts on this.  We have met numerous patients in the waiting area, mostly liver transplant recipiants who tell us we are in the best care and that is reassuring.  Thanks for listening......Laura and Tom



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

tomyboy


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thank you both for the support. I will keep you posted.  Tom goes to the cardoligist here today, is scheduled to have another
CT Scan and Bone Scan on Thursday.  I am thinking they may want to compare the two CT scans.  I agree with you, a liver laceration did sound weird over the phone, but I am very naive when it comes to the medical terms. Where as, Tom is an expert.  I will keep you posted and hopefully this is just a small tumor that didn't start somewhere else.  That is why the dr said he wouldn't know anything until after he removed it. 

 

Laura



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Cinnamon Girl


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Very sorry to hear this, Laura, I feel for you both.  Thank goodness the tumour was picked up when it was, and I`m sure Tom is in good hands at Mt Sinai.

I hope you find a good liver cancer group but please do keep us updated.  We care about you both and will be here for you and ready to give you support any time at all.

You`re in my thoughts, take care.  Sending hugs, Jill xx 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
mallani


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Hi Laura,

Sorry to hear the news about Tom. As I said in my reply to your previous post, the 'liver laceration' story was wierd. Obviously an invention as the C word should not be relayed over the telephone.

If the tumour is small, vascular and well-defined, it is probably an HCC related to cirrhosis. However a secondary tumour from another organ can only be ruled out by getting tissue for histology. You speak as if Tom is having a complete resection of the lesion- bit unusual but Mt Sinai should know what they are doing.

I would want an MRI with contrast, as HCC's may be multicentric, and I would want to be sure there is no other small lesion, not seen on CT.

Depending on the position in the liver, resection of a small lesion is not a big deal. If it is found to be an HCC, TACE (TransArterialChemoEmbolisation) is often performed, with excellent results for small solitary lesions.

Cross your fingers and hope it is a benign lesion, such as an adenoma or haemangioma.

Please keep us posted- we're here for you both.



__________________

Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Biggyb


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Saying a prayer.



__________________

58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
jrc


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Keeping you and him in my prayers

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Geno 1 A Started Tx w/ Victrelis  8-3-11, Viral Load  21.2 Million,  Und Weeks 4 Through 28 ,End Of Tx 2-15-2012 !SVR
tomyboy


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Hi everyone, dont know why I couldn't put this under a another discussion but regardless we have been hit but yet more bad news.  We went for our follow up appt at Mt Sinai as we were told Tom had a liver laceration.  I am sorry to report that we were informed the CT Scan revealed liver cancer.  We are blown away.  The film shows a small tumor on the lower left side of the liver which the doctor feels hasnt been there very long.  We are so grateful the heptologist there the last time demanded he have the CT Scan that day or this would have never of been discovered.  The surgeon believes it is stage 1 and until it is removed we don't know how "aggressive" of a cancer it is, or if he will need chemo or radiation following sugery.  Having hep c and cirhossis isn't helping as his liver is already comprimised.  We are very confident of the surgeon and that it hasn't started any where else, well, Tom is anyway, I am still a wreck.  The surgery is major, don't know how long until they get in, and pray there are no complications.  He is having his pre test done locally and on 2/25 we go back to the city to meet the anthosilogist, surgeon, etc. and will do the pre testing.  Tom is scheduled to have the surgery 3/6. He will be in there a minimum of 10 days and recovery is approximately 3 months.  He is such a fighter and has been dealt many rough cards.  Like I have  said previously, he never catches a break.  Dr locally feels he will do well, as he has done many hep c treatments previously and his liver is functioning.  I plan to stay in NYC while he is hospitalized as I am his support system and all of you, including my many friends, and family are mine.  While at the hospital, we met a guardian ange named Michael.  I believe (well he does too) he was put there that day to meet Tom.  He was a 54 year old man from NJ, with hep c who had 2 liver transplants and was on his death bed in 2008.  He recieved a 2nd one and is living proof that there is someone higher up watching over all of us.  He help our hands and prayed and others in the lab area, came put there hands on Tom and prayed with him.  It was inspiration and very emotional.  This has given us hope that he will be cancer free and wont need any more treatment for the cancer.  We will deal with this now, and put the hep C on the back burner again.  I will be checking in with all of you from time to time, as I may need to vent as I was very angry at first, that God had to put my Tom through something this traumtic.  I wish you all the best and thank all of you here who respond to me, and give me a chance to speak my mind.  I may need to look for liver cancer forum, and if there is one, I will gladly join and pray that there are people as knowledgable and supportive as all of you have been.  Please, keep Tom in all of your prayers...smile

 

 

Hi all, Tom had his appt last Tuesday at Mt Sinai and liver specialist reported local dr here did the right thing by taking him off triple therapy. He recommended that Tom wait for new treatment in the works which has less side effects.  He was eligible to possibly be in clinical study trial but Tom didn't want to participate.  He did a lot of blood work and scheduled a CT scan that day.  Mt Sinai called Tom yesterday and reports he has a lacerated liver.  This is caused by blunt trauma.  The only we can think is maybe it occured the day I came home from work and found him on the floor.  I have only googled this as the doctor won't give out too much information on the phone.  We have an appt to go back to another specialist next week at Mt Sinai for a consultation. We don't know the "grade" of laceration and are hoping it isn't anything that requires surgery.  Does anyone know anything about this condition that can put our minds at ease?  We have already cried and I have googled some information.  I do feel, it was very serious they would have told us to immediately go to the hospital right....Tom just never gets a break..he always seems to have health issues follow him.  Will let you know how it goes again next week, his liver is compromised by the hep c as it is.  thanks for the



__________________

Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

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