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Jeff Jones Update From Michigan Jan


michiganjan

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This past week we got the results of the CT scan taken as a follow up to the procedures Jeff had done to fight his cancer. He had the left lobe of his liver treated with radioactive spheres. There were 3 tumors there. On the CT scan only one was visible and it is smaller, so that is good news. Jeff also had a tumor in the caudate--back part of the liver--and it has remained the same.

He also had a large mass of cancerous lymph nodes near the pancreas that was treated by cryoablation--freezing technique. That mass appears the same on the CT scan, but the doctor said that at least part of it should be dead and just sitting there.

So the above is all good news. However the bad news is that in the right lobe of the liver, which was not treated with the spheres, there are two tumors that definitely grew in size. This is a big concern because it means that the chemo is no longer working and since Jeff's cancer is systemic, if the chemo failed on those two tumors, it will be failing on the microscopic cancer throughout his body and metastisis may pop up anywhere.

The decision has been made to have the radioactive spheres administered to the right lobe of the liver. This may also reach the tumor in the caudate that was unchanged with the last treatment.

The oncologist also changed one of the chemo drugs in the hopes that it might make chemo work again.

The spheres treatment will be most likely in about 2 weeks or sooner. Tomorrow we are also going to consult an experimental chemo oncologist to see what options they may have for chemo as part of clinical trials.

So this terrible fight moves on. There are risks to treating the right side of the liver with the radiation, liver failure being one that would result in death. The doctor says this is unlikely and Jeff does have good liver function going into this procedure. Still Jeff has decided to do this. I agree--what other choice does he have when the chemo is failing? There actually are other procedures to work on the liver tumors on the right but because there are likely tumors on the right that are too small to see, the other treatments are limited to what they can see during a procedure and the spheres can catch anything not seen, so wil go with that.

I want so much for Jeff to get to NED (no visible signs of disease) status so he can go off chemo for awhile. He has more than 1 year of constant chemo and we certainly can't stop it now. This has worn him out. It is a good thing he was a very strong man when this all started.

I think I got too much outdoors the day before yesterday. Did some pruning and got too warm. Came in and cool-showered but still tired today from it. Slept a lot yesterday and did not want to get up this morning even though I slept till 10 a.m. I am going to go back to bed for a while sometime today and just sit and read the rest of the time. I need to recover to be ready to go again to the experimental chemo app. tomorrow. I am still recouperating from the all-day Friday stint at the hospital for his chemo treatment.

YIPES! And so we go on. The chemo is wearing him out and the fight is wearing me out, and My POTS doesn't help anything!

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Jan,

I'm glad you and your husband are such strong people. Let us know what happens with the apptmt tomorrow? As always, you both will be in my prayers...Hang tight.

Jacquie

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Jan,

Thanks for posting this update. I think about you guys often and pray for you. Glad to hear your are resting and taking care of yourself. Also glad the spheres had some good effects. I hope that the upcoming treatments are even more effective for Jeff. This must be so difficult for both of you-- I can't even imagine.

Kristen

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Hugs to you both from me and Teri (((((J & J)))))

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jan

I don't even know what to say. I had thought about emailing you to see how things are going, but sometimes 'being asked that so much', can add to the stress of it all. I am sorry about the tumors in the liver.

It has been such a journey for you both and hearing how well Jeff has handled the chemo from the get go, was unreal...how he would go out and help others, handing out sandwiches at emergency situations. I can NOT even imagine how draining this must be on him.....and YOU.

How the both of you have handled this challenge is a testatment to the character of you both. You have so much going on but never once, has self pity oozed from your posts. You have been honest, frank, tired, hopeful...just putting one foot in front of the other and moving forward. You both are inspirational.

I am sending prayers and thoughts to you both, and even though that sounds trite, sometimes, it's all we can do and there can be POWER in the energy of others thinking about somebody...at the same time.

Do keep us posted as you see fit.

You are a trooper.....as of course, Jeff has been as well.

Sophia

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We have come to a major fork in the road, rather I should say a 3-way split. One doctor wants to do cryo for Jeff's remaining liver tumors, one wants to do the right side of his liver with Sir Spheres, and we have just asked the experimental chemo program oncologist for her opinion as to what should be done. The disease may be on the move but so are we. It is just hard to make decisions when we have divergent but educated, smart opinions from doctors we have respect for. I will post when we know the plan.

I know I am talking about my husband's cancer and not POTS, but I need my POTS friends right now. I feel like I know you and I lean on you for support. Thank goodness that we have the Chit Chat forum where I can do this.

Michigan Jan

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Jan,

I can not EVEN imagne having to make the choices that face Jeff now and it NOT AFFECTING YOUR POTS! Emotional stress can be worse than PHYSICAL stress.

Please keep us posted.

I continue to send prayers, and thoughts to you guys.

Hang tough and tie another knot in the proverbial rope.

Sophia

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Jan, thank you for the update, and where else but here to post, among a lot of friends that have you in their thoughts and prayers every day.

I sometimes think it's harder to get mixed results, because you are just more stuck on how to respond. A rock and a hard place.

I will be praying extra hard for you both, that you both get some much needed rest and some great news. Take care...morgan

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Jan, I can empathize with your situation and the questions of opinion differences. My case was certainly much less ominous than Jeff's. Nonetheless, the doctors did not hold the same opinion about the need for chemo. I went with the most conservative and took chemo as I wouldn't want to be sorry.

Today, in the doctor's office, I saw an article (Time? Newsweek?) where they rated hospitals the best overall and the best by specialty. Any chance Jeff and you can get to Sloan Kettering? Perhaps they can be the tiebreaker. What about NIH? Perhaps they have some clinical trials going on or some new treatments. You could probably even given them a telephone call yourself.

These are just some thoughts. Wage the fight! Challenge the medical field! Jeff is a fighter and you are his biggest champion!

I count you among my friends! I wish I could be there to help support you both.

Lois

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sorry i'm a bit behind in a reply, but you & jeff both continue to be in my thoughts and prayers. you both are a great example to many...

:) melissa

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hey there,

i dont know you and i'm new to this site but i just wanted to take a couple minutes and pray for you and your husband, believing that through God your husband and you as well will be made whole....

Lord Jesus, I come before you tonight. I ask that you pour out your healing anointing over jeff and jan. father, i pray for a miraculous healing in jeff and jan's body. when all else seems to be failing, you never do. you are a friend in time of help. you are a sustainer. so God, i pray a sustaining hand to carry both jeff and jan through this trying time. you are the lifter of our head Lord and i ask that you lift jeff and jan from the weariness and worry of their circumstance and wrap them in your peace and love. give them sweet sleep tonight Lord, give wisdom and insight to the doctors that they visit tomorrow. I claim healing God, in both jeff and jan. that every cancer cell would be gone through your touch. healing is claimed, faith believing, in your name, amen.

press on. i just couldnt pass up the opportunity to pray for you after reading what you two are facing. life is tough. it's a battle to be fought. i pray victory for you both over this battle.

God bless.

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Jeff had the right lobe of his liver treated yesterday with the radioactive spheres. The procedure went very well and he feels fine today. Thank you everyone for all your prayers, healing, energy, thoughts, hugs, and support.

Now we have to make some difficult decisions about chemo. And so we go on, fighting, to the next round. He may enter a clinical trial sometime soon.

Michigan Jan

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Guest Julia59

Jan I'm so happy Jeff is doing Ok after the procedure yesterday. You and Jeff are both strong people.

You both continue to be in my prayers.

Here's to no more forks in the road!---- :)

HUGS,

Julie :0)

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Thanks for updating Jan. Still thinking of you and Jeff and sending thoughts, hugs and prayers.

Sophia

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Jan,

Thanks for keeping us updated. I often wonder about you and your husband. Let's hope whatever you next decision is, the treatment helps Jeff....

Jacquie

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