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illead's picture
illead
Posts: 566
Joined: Aug 2012

I 'm so sorry I did not post sooner.  After the appt we had to go to Sacramento to pick up a new modem, so I wrote on my phone on the way down.  I finished and was proofreading and poof my message was gone!  AArgh!  Bill just now got the computer running again.  Well, the news is ok.  The pet showed the nodes lit up., the cluster in his abdomen and 2 very small ones in his pelvic area.  The doctor scheduled him for a biopsy on one of the small ones to make sure it is MCL. He and we are sure that it is.  He feels that because the affected area is small and that we caught it so early that is a good thing.  He thinks they will use a target med rather than chemo to treat those areas.  Ibrutinib is brand new, or maybe Revlimid or Velcade which are also new in the last few years.  After the biopsy results he is going to send us to Stanford .  He said that out of our choices here, that is where he would go.  He said the doctors are top notch and that they even bring in renown doctors from all over the world or consult with them.  A friend told me their cancer center is a hospital complex of its own.  So we are really happy about that, we feel we will be in good hands.  Although it is not the best news, it is much better than what we expected and we are feeling back to normal pretty much.  Thank you, thank you, thank you for your comfort, support, prayers, and kindnesses, it means more than you know.  Our thoughts are with Karl and his family now, we will fight together.

This truly is a wonderful group, Bill A& Becky 

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Hi Becky and Bill,

 

I'm sure you would rather of heard that nothing was lighting up, but this does sound hopeful.

The new targeted meds are the way to go. I'll be keeping only the best positive thoughts for you both.

I think you will like the cancer center at Stanford. Yes it is big, but also feels small and comforting. The main cancer center is a some what new building and very lovely and calming. The infusion area/rooms are bright and friendly. I would say that friendly is the key word.

I had my biggest surgery at the cancer center. I have used their infusion rooms and labs. Overall it is not a scary place.

They have a new women's cancer center across the way from the main center, so it's less crowded. Although the women still use the labs, infusion room and all the other fun areas...

The center is also connected by walkways to the main hospital and the childrens hospital.

If ever you need any local advice, recommendations or just a quick hello from a online friend, please let me know.

You can PM me if you would like my cell number. I live 5 minutes away.

You are heading to the right place, full of great docs and friendly nurses. My daughter works at the main hospital.

One foot in front of the other as you face the next hurdle.

Hugs to you both

Lisha

jimwins's picture
jimwins
Posts: 2085
Joined: Aug 2011

Thanks for sharing what you discovered.  I'm glad this was caght early and I'm optimistic too.  It sounds like everyone is on top of things and he'll be receiving excellent treatment and care.  I know you wll keep us updated and thank you for that.  This is a wonderful group and you certainly contribute to that in no small part :).

You know we're here and as always, there's a limitless supply of hugs!  

Jim

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Becky,

  Thanks so much for the update! I was thinking about the two of you all day today. Like you said, not the best news, but certainly not the worst, and Stanford sounds like a great place to tackle the new treatments and care Bill will be starting. Once the biopsy is done things will start to move right along, and as with all treatments, it will be done before Bill knows it. I'll be keeping you in my prayers thinking only positive good thoughts. Take care, Love...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

  I waited up until late to hear the results, but there is a 3 hour time difference on the east coast. Thanks for responding when you could. It's not the best news, but like you said it is small and probably easier to treat. Be thinking of you and Bill.  John

coachmike
Posts: 149
Joined: Oct 2011

Becky

I am sad that its not the news we all wanted to hear, but i agree with you that its not the worst case result, Im so relieved that it was caught early and your doctor is being so aggressive with your treatment. Ill continue to pray for Bill and you as you take on, and ulitimately defeat this.

Mike

ROF
Posts: 11
Joined: May 2012

Bill and Becky

 

I live in Northern California and was diagnosed with Nodal Marginial Lymphoma in 2011.  90%+ bone marrow involvement but only a few nodes.  My oncologist sent me to Stanford which is a 9 hr round trip.  The blood cancer center is really something.  Very modern even had a person offering massages to those who had driven along way...my wife liked that part.  Here are some things I wish someone would have told us before we went.

1. use the valet parking....I never do this but the second time we went we did and it really was as cheap as trying to find a place to park.

2.  This is a teaching hospital so you may be seen by the head doctor and students.

3.    The doctors are the best around but they are seeing a lot of patients.   We wrote down the questions we wanted ask and then as we asked them my wife and I wrote down the answers and then when we got home we compared our answers.  Funny how we picked up different things.  

This and UCSF are the best places in Northern California to find the most current treatments and the best doctors in the field for blood cancers.

Good luck

Chris

Rocquie's picture
Rocquie
Posts: 523
Joined: Mar 2013

Becky and Bill, I am so thankful that the news turned out not to be as bad as you had feared. Our minds can really do a number on us can't they? It is wonderful that you have access to such cutting edge treatments and top notch doctors without having to travel. So fantastic that the area is small and they caught it so early! And brand new treatments are so promising. 

Thank you for the update.

Big, big hugs to you both,

Rocquie

 

Shoopy
Posts: 210
Joined: Jul 2013

I know it's not the perfect news but it does sound like there's a great plan there.  There is room for you in my prayers and you can count on being in them.

Karl

illead's picture
illead
Posts: 566
Joined: Aug 2012

We just wanted to thank you all again.  Just knowing you are there for us is very much appreciated.  Lisha, how nice for your offer.  I will certainly keep that in mind.  We very rarely went to the doctor before all this and it's pretty overwhelming, kind of like "who.....us?" Smile  Thank you Chris, that is awesome information, especially the valet parking.  We would be driving around for hours trying to find a non paying spot and be our own worst enemies.  You must live around Redding etc.  We are in Yuba City.  When Bill asked his doctor he said if it were him he would go to  1.Stanford  2.UCSF  3. UC Davis.  We said "send us to Stanford".  Hang in there Karl, you are in our prayers also.  Yes, this is the Devil's work, he takes delight in his accomplishments but we know his time is short and so does he.  In the meantime, we fight and keep our faith in our Creator.  I worry so much about your wife, I hope she is able to hold up and has good support.  All of you are so dear.  We will keep you informed, we won't hear anything until Monday.  The nurse said most everyone is gone until then.

Our best to you all, B&B

 

anliperez915's picture
anliperez915
Posts: 756
Joined: Sep 2011

Hi Bill and Becky,

Just replied to the other post, hadn't reached this one yet. I hope you are doing ok Becky, but just having a plan on what the next steps are going to be makes it a little easier. Take care both of you and I will continue to keep you both in my prayers! (((HUGE HUGS))))

Sincerely,

Liz

illead's picture
illead
Posts: 566
Joined: Aug 2012

Just wanted to check in and say that the cancer center called yesterday and Bill is scheduled for his biopsy a week from today.  He still feels great and is working on a big job.  We went to see our friends this wknd in Napa Valley Wink, so we are staying in LaLa land for the time being Laughing.

Becky

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Bill and Becky,

 Glad to hear Bill is keeping busy and the two of you are doing fun things to keep the stress down. It's hard to do, but the one thing we do have control over with this darn cancer business, is how we choose to deal with it. Less stress is best, and try to live as normal as possible has always been my motto. Hang in there friends!

Love...Sue

MChantal's picture
MChantal
Posts: 105
Joined: Apr 2013

Bill and Becky,

As you two both hold such a special place in my heart, I hate reading this and knowing that I have been MIA makes me so much more upset.

I am thankful that you two are optimistic and I have always found comfort with your words in which that does give me a peace. Yet, it's just a bummer! (I know I am sounding selfish but darn it! You two don't deserve to deal with this type of shainagains again...)

Let me know if Kyle and I can do anything for you two. I'll send more cookies! :)

Please keep us updated.

Sending warm hugs and many prayers,

Michelle

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

Becky,

The closest I get to the NAPA Valley is at my local grocer, but it is always a sweet time.... !

Praying for the best from the biopsy.

max

illead's picture
illead
Posts: 566
Joined: Aug 2012

Thank you so much, you are so special too, I think of you all the time.  I have been wondering how things are going but figured that you must be very busy and also enjoying life.  Of course growing a beard is a big project Laughing.  I'm so happy to see Kyle looking so good.  You two must be so happy.  We are so happy for you both and I know all the rest here are too.

Yes, life dealt us a speed bump, totally out of left field, but we are okay.  We keep busy and try not to think about it, it doesn't do any good.  We should hopefully know by the end of next week when we will go to Stanford etc. 

You both have been through so much, too much for someone so young, but you have handled it valiently.

We both really appreciate your kindnesses so much, thinking of you always, Becky

girliefighter's picture
girliefighter
Posts: 218
Joined: Mar 2013

Becky and Bill,

You two have been there and so supportive to all of us through our trials and tribulations, now it is time for us to pay it forward. I will be thinking of you often and praying daily, keep your strength and faith. I hope the best for you at Stanford, it sounds like a great place to be.....well, if there was a great place to be in the cancer world...lol...please keep us updated as you have many people "family" on here that care deeply for you both.

XXXOOO

Carie

illead's picture
illead
Posts: 566
Joined: Aug 2012

Bill finally got his appt. at Stanford.  It is Wed the 26th., so a little more waiting time,  Argh.  We googled his doctor and she has been in practice since the 80's, she is a HL survivor herself.  She is also a professor of oncology at Stanford and worked on the resarch of the new drug I have spoken about.  She is one of two specialists for MCL at Stanford and is right now working in clinical trials with Bendamustine/rit plus another drug for MCL.  I don't think we could ask for better than that, we are very thankful.  Another note, I am very concerned about Karl (Shoopy), I sure hope he is okay.

Becky

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Bill and Becky,

  So glad to hear you finally have an appointment set up....wish it was sooner, but it will be here before you know it! Sounds like Bills doctor is a good one and he will be in good hands. Waiting is just so hard! I'll start a new post asking How Karl is doing...maybe he didn't see your comment because it's in a added in to this older post. You two take care and keep things peaceful until appointment day.

Much love to you both....Sue

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1211
Joined: May 2012

It does indeed sound like Bill has the perfect doctor for his situation . Thinking of you guys daily.

I got a flu shot this year, but came down with a case of it two days ago.  My fever hit 102.7 last night, two hours after taking 3 motrin, but I am feeling better today.  My family doc says up to 30% of people getting the flu shot will get the ful.  But, it is well worth it for the other 70 %. My oncologist had me get a pneumonia shot at the beginning of my chemo, and I recommend that for all as well.

 

max

allmost60's picture
allmost60
Posts: 3175
Joined: Jul 2010

Hi Max,

  Sorry to hear you got the flu Tongue Out...bummer! I've been really lucky...can't remember when I've had the flu...probaly 8 to 10 years or better. The shot always makes me feel a little punky for the first 24 hours and my arm usually gets sore, but no flu!!! You rest and get better friend. Sue

Rocquie's picture
Rocquie
Posts: 523
Joined: Mar 2013

Hi Becky and Bill, That must be a relief to have an appointment with a Doctor so highly skilled, experienced, and yet forward thinking and a strong  researcher. That sounds very good, indeed. Too bad you have to wait another couple of weeks, but that could be viewed as a good sign. They must not feel that Bill's case is any kind of "emergency" or they would get him in quicker, right? 

Stay strong! Many are praying for you.

Hugs and love,

Rocquie

 

 

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