Hep C Discussion Forum

wmlj1960 · Moderator

RE: Mt Sinai

Tig · Admin

Good luck to you both Laura. I'm praying for you both and hope that this is the end of your difficult journey and the beginning of the exciting future you both deserve. I'll be thinking about you both and will be sending all the good vibes I can muster! I know that it's an anxious time for you two, but you're also two of the most positive people I know. Let us know as soon as you're able. Maybe you could give Tom a pre filled in message so all he has to do is hit send, ha, ha! We're going to have to work on his IT skills biggrin .

You're right of course, this will be your first, last and best! My Magic 8 Ball says "Perfect"

tomyboy · Senior Member

Thank you all....Mt Sinai called me at work today. I have to be to the hospital at 9:45 AM. tom's first radiation treatment is at 2:00 PM. Strange, I'll be under and he'll be getting radiation....scared but ready...to be honest, I liked it better when he was on this side of the table......hopefully this will be my first and last.

Penelope PePod · Senior Member

Laura,

All my best to you and Tom next week. Monday sounds rough, but it will be good to have it behind you. My thoughts and prayers are with you both.

Penny

mallani · Guru

Hi Laura,

Thanks for the update. Best wishes to both of you as you continue your rocky journey. Great to hear Tom remains Undetected. Cheers.

JimmyK · Guru

Greetings Laura.

Having read the story of you and yours, it is both my prayer and belief that this Thanksgiving shall be forever special to you both.

Warm Regards

JimmyK

Tig · Admin

Hi Laura,

Thanks for checking in and giving us your timeline. You have both been rock solid throughout all of this and I know that you will both come out on the other side, in better health. We will all be thinking of you both next week and look forward to hearing from you just as soon as you're ready. You both have my prayers and wishes for a speedy recovery. Get this done and get that vacation started, you deserve a great one. Good luck.....

Cinnamon Girl · Guru

Hi Laura,

Thanks for your updates, and many congratulations to Tom for his continuing Hep C undetected status!

With all that`s going on you`re bound to be feeling nervous, Laura, anyone would be. Try to take it one day and one step at at time, you`re both receiving excellent medical care and attention at Mt Sinai, and you have amazing courage and determination, as we`ve already seen.

You`ll both be in my thoughts on Monday, and I wish you the very best of luck!

I`ll be looking out for your next post... smile

tomyboy · Senior Member

Update all, we both went yesterday to Mt Sinai. tom to get fitted for his radiation vest and me to get an occipital nerve block before surgery. Tom gets his first treatment Monday while I go in for surgery. ON a positive, he is still hep c free....hoping we both do well. Am nervous, but after reading what all of you went through, I have lots of courage. I did a chiari forum, but nothing like this one here. Thank you to all who have listened and learned from our story. I will keep in toufh while I am home bound,.

Tig · Admin

Hey Laura,

It sounds like November is going to a busy one for both of you. Consider it the start of a new beginning. Now that each of you has a path to better health, make it part of a positive plan to look forward to. Yes, it can be an intimidating thought, but once you both get involved in the process, I believe the nervousness will be replaced with determination. Waiting is sometimes the most difficult part. By Christmastime, you'll be in recovery and Tom will finished with the radiation. Let the vision of a healthy 2016 be your driving force. There are some very good times ahead, good luck!

tomyboy · Senior Member

Went to the hospital again yesterday. Tom met with a radiation oncologist specialist. He reports the Team wants Tom to have radiation as a preventative as when the doctor completed the ablation, one tumor was very close to his diaphragm and wasn't sure if she got it all. He will get five treatments and they are working with us as having him do them while I am in the hospital. We are staying at the TLC of Mt Sinai so Tom will be down in the city regardless. I had another brain MRI and pre surgical testing...I'm good to go and a nervous wreck now. Oncologist still called harvoni the "miracle drug" as they have never seen so many people beat hep c. Again, they say Tom will be part of the outcome statistics, and hopefully his story will be an inspiration to many. Hasn't gotten another PCR completed, but I am sure his viral count is still 0. I'll keep you posted.....Hopefully at the end of November we will find out the ablation and radiation killed the tumors, I will heal, and we can go on living our lives. Thanks all,

Laura

mallani · Guru

Hi Lara,

Thanks for the update. You guys certainly have some medical dramas.

Firstly, don't worry about the failure of radio-embolisation. Ablation is just as good IMHO. I only did ablations as the beads were not available at that stage, and I think the ablation was just as successful. Granted, you loose a bit more liver tissue, but HCC's get all their blood from the hepatic artery, and if that's blocked off, the HCC's die.

Sorry to hear you've got Arnold-Chiari. Bit of a nuisance but hopefully they can decompress without too much trouble. You're certainly at the right Hospital.

All the best and keep us posted. Cheers to you and Tom.

tomyboy · Senior Member

Hi all,

Thank you all for the kind words. It really brightened my day. TIG- FYI- we were slated to go to the Dominican Republic from 12/12 - 12/19 this year. I had to cancel due to both of our medical problems. We do hope to plan something for next year, when we both healthy and able to enjoy ourselves. You are a wealth of information too. I never even heard of chiari malformation ....and most people I tell, haven't either. Just happy that it can be treated with surgery. Tom sends his best but isn't too comfortable on a computer site. i still show him and print responces and have the link saved on our favorites. Maybe while I'll be home with him for a while, I will show him again how to get on and respond to all of you. Best to all of you and I will keep you posted. He goes to the oncologist tomorrow, me another MRI and pre surgical testing. It will be a LONG day in NYC.

Laura

wmlj1960 · Moderator

Hi Laura.

I've seen you and Tom's story take a bunch of tight turns and you both have kept the show on the road well. This looks like another one of those turns an I'm confident you will both work through this one too. Good luck with your surgery on the 16th and keep us up to date on how recovery is going for you both. smile

Tig · Admin

Hey Laura,

I hope you've made plans for a great vacation together after all of this is behind you! You have both earned it and then some. I hope Tom gets to feeling better after the ablation, I'm sure that took it out of him, but knowing Tom, he's probably ready to get going now. The fact that he remains SVR is great and that has to be reassuring to know that is no longer a consideration. He's beating this one step at a time, so if that's how it's going to work, so be it. Staying positive and well informed have worked well for you both, keep hold of that. If he's not ready to do the SVR Happy Dance with us right now, tell him we'll wait. But make sure he has his shoes polished, he's gonna need them!!

Chiari malformation isn't heard about much. The procedure should bring great relief to you, and I think you'll notice some quick relief. I've had a lot of cervical surgery in that general area and it has all gone very well. Took a little recovery time, but it's certainly manageable and with Tom on the caregiver team, I know you're going to be packing for that grand vacation in no time. Keep your spirits up Laura, these are the times that require the strength you've already shown us. I have little doubt that your strength and the support you both share for one another will bring you through with bells ringing!!

Keep us in the loop and tell Tom to let us know how it goes after your procedure. I look forward to hearing about the ablation success and any updates you get from your doctors as well. Hang in there girlfriend, we're on your team!!

Cinnamon Girl · Guru

HI Laura,

Please do vent as much as you like here, you`ve certainly had good cause to, and I really feel for you both with what you`re still going through. As if things haven`t been difficult enough, and now you find you have a severe medical condition yourself. It really is time you two had some better luck!

On the positive side though, the good thing is that your condition has been picked up and diagnosed and a treatment plan is in place. And even though Tom wasn`t able to have the radio embolization, I`m very glad to hear that the liver ablation procedure went well, according to his doctor. Very reassuring to hear that his viral load is still undetectable too.

Do your best to keep your spirits up, I`ll be keeping you both in my thoughts and wishing you all the best luck in the world.

Thanks for keeping us in the picture, and I`m sure Malcolm will want to comment when he sees your update.

Stay strong, as always, Laura, you know we`re here for you any time at all. Looking forward to better days ahead! smile

Hugs to you... Jill xx

tomyboy · Senior Member

Well all, what else is new. It's been a few weeks, but Tom couldn't have the radio embalization. When he went to get maped a few weeks ago, The doctor couldn't map him as he is filled with too much plaque. After much discussion, they decided they would try the ablation of the liver. He had this completed Friday. He is feeling and the doctor reports she thought it went but. We won't know for a month if it is a success. They have scheduled an appt with a oncology radiologist in the city this Friday, as his surgeon wants him to do radiation as well. Good thing is his viral count is still 0. Now, I had an appt there as well a few weeks ago and long story short, after an MRI, i have been diagnosed with severe chiari malformation. I have surgery at Mt Sinai November 16th. It is impacting not only my swallowing, but also my vision and balance. This is new being on the other side, now Tom will be taking care of me. As always, praying for all of you out there that you beat this terrible virus....and praying that both Tom and I come out ok and we can look back at ourselves six months from now, and be healthy.

Thank you all for letting me vent, for some bizarre reason, it seems like I have known all of you for quite some time now and am very thankful to have this site to vent in. I will keep you posted on Tom's progress, as always, all the best.

Fondly,

Laura

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