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Any news from hiccup?

DadysGirl
Posts: 318
Joined: Aug 2011

Emailed him but did not get a response, he is quick in responding...

Wishing his sct is going well...

Please let us know if you read thisMSG...

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

I hope he is doing well and that we hear from him soon. I know the treatment is intense, as I will be going through it in April. Keeping up prayers and postive thougths for him!

DadysGirl
Posts: 318
Joined: Aug 2011

Wishing you the best ... Sorry I don't have great words to say today, we lost another great friend....

Thanks Jim if you hear from him please share...

Take care both

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

I haven't heard from him via email in about 2 weeks but I think he posted here since then.  I just sent him an email and hopefully we will hear from him soon.  I think he said he had family coning in.  Sending him positive thoughts and wishes.

Jim 

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Hiccup,

I also wanted to let you know that we are thinking of you! Please let us know how you're doing when you get a chance. Take care

Sincerely,

Liz

hiccup (not verified)

Thanks so much for remembering lil 'ol me!!! I am on my fifth day of inpatient chemo right now... for those of you who enjoy details for comparison to their own auto SCTs, past or future, I'll let you know how it's been:

 

Day 1 - Carmusine -- If I remember correctly, it took about four hours for the giant bottle to finish. I felt pretty dogged afterwards and nauseated. Shortly after, they gave me a little BADCAD pump with Benadryl, Ativan and Dexamethasone that I can push on demand. That thing is a lifesaver!

 

Days 2-5 - Etoposide (4 hours) and ARA-C (~1 hour). These I am tolerating fairly well... once again, I think due to my little pump friend.

 

Tomorrow is my last day of chemo (hopefully forever!)-- Melphalan.. and I have no idea what to expect there. I'll keep you posted as I can!

Reinfusion is set to take place on Tuesday... any well wishes, thoughts, or dance is well appreciated! Love all you guys

 

-Nathan

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Nathan,

 I think I'll leave the dancing to others, but you definetely have prayers, good vibes, and positive thoughts coming your way from me! Hang in there buddy....your attitude is just fantastic. Much love...Sue (FNHL-2-3A-6/10)

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

There you are!  So good to hear from you. Those pumps are cool.  I had one during recovery from surgery for pain.  I used it a lot the first day or two.  Hang in there and plenty of positive thoughts and energy are "dancing" across the Internet to you.

Jim

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Nathan,

Hooray to your last day of chemo tomorrow, and I will find the energy by Tuesday to do a dance for you!

I found the RICE tolerable in the hospital, but have been wiped out since I've been home.

It's good to hear your experiences. Keep us posted as you can.

Continuing to send good thoughts and healing energy your way.

Cheers,

Liana

 

DadysGirl
Posts: 318
Joined: Aug 2011

Chew on ice ~ 15 mins b4 and during and after.. It will help you not get sores ... I've read about it a s well as I believe mike coachmike had suggested it as well,, can't write morejust extremely sad lately... I hope you'll read it b4 tomorrow. Take care and thanks for letting us know how you are doing...

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

Hi Nathan,

I just wanted to say that I am thinking of you and sending you positive healing thoughts.

You have my vote for this being your last chemo ever!

Tuesday is your day, hopefully not to long and textbook easy. I'll keep you in my thoughts and know that I'm sending the very best wishes and positive thoughts for your recovery and new beginning...

 

Huge hugs

Lisha

hiccup (not verified)

A quick update... Today is day -1.. my day of rest. Tomorrow is reinfusion day!

 

Yesterday's Melphalan infusion wasn't bad. Run of the mill, really. However a few hours later I just slept and slept.

 

The best news yet... since I've been such a good trooper, I get to go home for four hours to visit my lovely kittens! I sure hope every fine person who visits this message board (meaning: YOU) has a great day! I can't tell you how great an honor it has been to walk this path with such great survivors like yourself.

 

-Nathan Laughing

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Enjoy yourself for the brief getaway!  You sound great and I'm glad.  I just got back from a first visit to the orthopaedic doctor.  I've been having intermittent problems with my right shoulder and some other things.  He told me I should lay of the "flying" Wink. I guess I won't get to France under my own power - LOL.  He thinks it's at least an inflammation and probably at worst, could be a partially torn tendon in the shoulder area. No big deal - just over the counter anti-inflammatory meds for 3-4 weeks and scheduled some physical therapy.  He did agree it could be a side effect from chemo but no way to know for sure.

You have a great day too!

Jim

 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

So is this the side effect that they don't tell us about, that we may have the power of flight? I'll take it. Tee hee.

Hope your shoulder is feeling better soon!

Liana

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Liana,

  When I had my first line chemo R-CVP I swear I could fly during the 5 days when I had to take the high dose prednisone...never tried, but there were many nights when I couldn't sleep when I just wanted to jump out the window and take flight! ha! Tongue Out!  The side effects from that nasty drug will never be forgotten! Have a good day sweetie. Love...Sue (FNHL-2-3A-6/10-age62)

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Sue,

yes I think I've had some flight experience with the prednisone too. 

Cheers,

Liana

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

Hi Sue

I remember when you tried to wash your big front window while on the pred. Seems that you were trying to fly then...

Love ya

Lisha

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

 Ohhhh I  do remember the window washing day! My arms and back hurt soooo bad that night. Then the next day I went out and trimmed all of our shrubs! I was a maniac while taking the prednisone! You and John kept me company more than one night in the wee hours of the morning, posting messages to each other! Soooo glad those days are over! Love you...Sue

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

So glad you got to see your kittens yesterday and that the treatment has been so doable for you. Wishing you the best today, the day of reinfusion.

Thanks for the update and very happy to hear how well your doing!

Continuing to send good thoughts your way for healing and recovery,

Liana

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Nathan,

  Man...you sound great! I'm so glad to hear how well you are doing! Enjoy your short trip home. Life is good! Best wishes...Sue  (FNHL-2-3A-6/10-age62)

illead's picture
illead
Posts: 524
Joined: Aug 2012

It's always good to hear positive news.  Congrats Nathan, it makes our day.

Hey Jim, we flew to Mexico yesterday and are our arms tired!  Busy today unpacking and getting the condo in shape.  Hope to see some whales, they are in Baja now.  Sorry you won't get to fly to France.  Maybe when you win the lottery you can afford a real plane, ha ha. Bill and Becky

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Hi Becky and Bill,

 Have FUN in Mexico! Rest, relax and totally chill out! Getting away is so important! Much love....Sue (FNHL-2-3A-6/10)

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

Hi Becky and Bill,

 

Have a wonderful time in Mexico.  I'm so happy you both get to have this time together.  Post pictures when you can.  Love, Emily

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

LOL - Enjoy your trip and hopefully your arms aren't too tired to lift the margarita glasses!  The whales sound cool!

Have a great trip - Jim

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hope you guys are having a wonderful time.  I had dinner with my brother-in-law at a Mexican restaurant this evening and I had a margarita in your honor! 

hiccup (not verified)

Hello fellow Survivors,

 

Hiccup here, on day +2. Most of my blood counts have now dropped significantly, and I can't eat a banana without an RN washing and peeling it for me. I woke up this morning nauseated and bleeding from the nose! However, I'm not letting that get me down... minor setbacks, see. I've got all my fingers and toes crossed in hopes of re-ingraftment taking place swiftly, and popping out of this joint for the other side! (I feel like a prisoner a bit..)

 

Anyhow, not much extra news to say... I just wanted to give a little update, and make sure that anyone with with an SCT in the future knows it's doable and not the end of the world as we know it. Whether it be scans, chemo or what have you... I know we're all some terrific fighters, and I'm honored to fight along with you.

 

-Nathan

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

Hi Nathan

Just wanted to say that I am thinking of you. You are an incredible fighter.

Hang in there, and before you know it you will be living life to the fullest.

Sending you hope and hugs

Lisha

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Nathan and thanks for the update.  Your attitude is wonderful!.

Just think - in no time, you'll be growing hair and be peeling your own bananas Wink

Nathan in 3 months - Hugs and laughs, buddy!

Joking aside, we're all in this together, Nathan. 

Jim

 

 

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Nathan,

 

I've been following your posts with great interest - thank you for being so detailed with your journey! SCT is in my future  -my doc has already prepped me that one day I will do that. Thank you for filling us in on the details. It will help many of us.

  I am praying  that all goes well without too many side effects for you.  I hope that your journey is easy and your re-building is quick!  You are doing great and I think that as we travel the different roads of this we find weird strength-right when we need it.  I really believe that is what is happening to you. You are so srong!  YOU'VE GOT THIS!!  No question.

 

I await your future posts.  God Bless.

 

Donna

illead's picture
illead
Posts: 524
Joined: Aug 2012

Hi Nathan,

     We know this is a difficult time for you, you must feel like a wet noodle.  You know we're all rooting for you to get past this part of it as soon as possible.  Please keep us posted but only when you're feeling up to it.  Bill and Becky

epicc's picture
epicc
Posts: 136
Joined: Nov 2012

I'm sure it's not easy, but so happy you are giving us updates.  You are strong and I know you will do fine.  You have a great outlook!! All the best to you.  Emily

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

HELL YES......I remember those nights. I danced on the ceiling sometimes all night long. I watched the sun come up many times. I could not sleep and was not even tired. I kept jumping on the computer looking for somebody to talk too. I didn't want anybody going thru what I was going thru. All the What Ifs or Maybe this or Maybe that thoughts.The first round of Pred wasn't so bad, but as the treatments progressed to the second or third cycle it started working on me. When it was 2am on the West coast it was 5am on the East coast where I live and I was still going wide open. I remember 1 night about 2 1/2 years ago around 3am Eastern time a person named Sue posted and I responded to her right away. She sounded a little distressed and I knew the feeling all to well. It is not a good feeling when you are up alone late at night. I am sure most of you can relate to that. Yes, I am glad those days are over, but I still miss talking to Sue late at night. I wonder what become of her. She went by the name of...Almost60   John

allmost60's picture
allmost60
Posts: 3167
Joined: Jul 2010

Cool She's waiting for sunny weather and spring to get here! Your so silly! Wink

 

illead's picture
illead
Posts: 524
Joined: Aug 2012

When Bill was on prednisone, we were at Sam's Club and we had the cart totally loaded (mostly with food he wanted) and here he comes, looking like a 3 yr old with pleading eyes and a giant box of corn dogs "Can we get these?"  I felt like an abusive mom telling him no.  It was pitiful!

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

I can certainly relate to that. I got plenty of exercise walking to the refridgerator. The CRAZYFoot in Mouth thought even crossed my mind to move it to the bedroom. A lot of food had a bad taste, but it did not stop me from eating all the time. LOL   John

hiccup (not verified)

You guys are something else. I'm not sure I'm really flying, it feels closer to floating like a low hanging balloon missing half its helium.

 

These have been some strange days, and sometimes the hardest part is just giving up your privacy and letting the hospital just do its thing. Today my ANC hit 0 and WBCs are at .1. So, they have brought on the big guns.. Cipro, Ketokonazole, and all of these other long-winded pharmaceuticals to keep me from turing inside out (ha!)

 

Tomorrow, they're going to start Neupogen shots again to see if my re-ingrafting cells can get shaken into action! Oh please let this do the trick!!!! I just can't wait to spring from this joint :)

Hugs all around!!

 

-Nathan

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

Nathan,

  There is another member on here by the name of Vinny that had some really low counts as well. He was down to zero at one time.  This was a couple of years ago. It took a while but he did finally get them up. I do not know what his counts are today. He hasn't posted in a while. Maybe he will jump in the next time he gets on. Sometimes it takes a while to get them to come back up. I got a white cell booster(neulasta) after every set of treatments. My counts never went down. Some members said it caused them arm pain. I was lucky in that respect. No pain at all. John  

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Nathan.  I think I've been missing half my helium most of life or it was replaced with methane Laughing.  You'll be outta there in no time and you got us here to cheer you on!  You are handling this so well, buddy.  Thanks for the updates and I hope the neupogen kick starts those cells into action.  Big hugs back to you!  - Jim

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

I am sure it is Methane.  As a matter of fact I can down right gaurantee it. !!!!!!!!!!!!!!!!!!Yell

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hee Hee - Hi John!  I thought I lost that target on my back with the hair during chemo.  Nice to have you picking on me again :).

 

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

Jim,

  I'm not pickin' on ya'. I'm just funnin' with ya'. We lose our sense of humor,Well thats when we will lose. I think that goes for every human being out there.  John 

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Nathan,

I'm happy to hear your weathering this so well. It helps me to keep my courage up. I'm in the hospital getting my second round of R-ICE. If the next pet scan looks good I will be starting mobilization. The Transplant is tentatively scheduled for May 20th. I'm eager to get this all behind me.

Hope your numbers come up quickly and that you can go home to your kittens soon!

love and light,

Liana

 

 

 

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

Hi Liana

 

I just wanted to say that I was thinking of you and sending you lots of support and tons of gentle hugs.

Hopefully your room has a nice view, everything is so green right now. You're at Stanford if I remember correctly, I know that place inside and out.

I'm just right down the road.

We are all here for you, day and night.

Lisha

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Hi Lisha,

I'm in Kaiser right now for the R-ICE. My next Pet is the 20th, and if that shows enough improvement I will start doing out patient treatment at Stanford in April. May I do the inpatient at Stanford. I got my calendar from them just today. So keep sending those good thoughts for a good pet scan on the 20th. I am so ready to move forward with the final stages of treatment!

I was jus looking at the your daughter's wedding pictures. What a lovely family you have!

Love and light,

Liana

illead's picture
illead
Posts: 524
Joined: Aug 2012

Our thoughts are totally with you, you are going through so much.  Nathan we cannot believe you are actually posting.  That shows you have what it takes to get thru this, we have no doubts!  Hang in there....you too Liana.  Bill and Becky

anliperez915's picture
anliperez915
Posts: 751
Joined: Sep 2011

Hi Nathan,

Hope you're doing well, sending lots of positive energy your way. Take care and keep us updated when you feel up to it. (((HUGS)))

Sincerely,

Liz

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Bill and Becky, thank you for your well wishes! And thanks for sharing your whale adventures. It sounds like you're having a lovely vacation. Yay!

Nathan, I'm continuing to send healing thoughts and good vibes your way.

Hugs to all!

Liana

illead's picture
illead
Posts: 524
Joined: Aug 2012

We don't know what you are going through but do know it is not fun.  Please know you are in our thoughts.  With your wonderful attitude, we know you will do great,  Thanks for your thoughts too.  Tonite we went to dinner with our neighbors here and we walked our dogs to the restaurant (both little white fluffys)  They brought a chair for each of them.  Can you imagine that in the states?  It was so cute.  Hang in there, we all care. B&B

hiccup (not verified)

Boy!

This has been quite a ride.... I'm still here in the "big house" as Jim would call it. Yesterday was a bittersweet, confusing & strange day... and it looks like engraftment has taken place!

My WBCs went from .3 to 1.9, and now today they are 3.6 or so. A lot of this has been pushed forth thanks to many Neulasta shots to the belly. The pain from those shots this time was much more intense than I'd experienced before.

I'm still on a pitiful leukopenic diet... but right now, things are alright. I underestimated the effects this would have on me mentally, and that has led to a few days of simple disconnection from reality. This is a pretty tough regimen, and I'm hoping it nips this in the bud. I cannot wait to get home and see my cats!

For now, I just have to mend. They are allowing me to actually go outside for a walk today. I think that may help calm my nerves. I still can't believe I've been in here for nearly 20 days-- that's been one of the hardest parts, being so out of control of life.

I've been thinking about you all and sending you my extra good vibes... my mind is all mushy, so feel free to ask any questions if you had one.

 

-Nathan

jimwins's picture
jimwins
Posts: 2025
Joined: Aug 2011

Hi Nathan.  I hope you get to go outside today - hopefully that will ease the confinement a little bit.  I think you're doing great!

Well, I'm visiting my niece and her SIX kids this weekend.  Right now I'm surrounded by noise, confusion and the little ones fighting for my attention. They range in age from 2 to 16.  Also, there are two big dogs jumping on me when they get the chance - they know I'm a sucker ;).  Karianne (5 years) wants me to open a lemonade stand with her.  Justine wants me to play a video game with her.  Benjamin wants me to play video game too.  Now one  of them is bawling like crazy.  Now where is that Ativan?  ;).  Maybe I should make magaritas for everyone so siesta time will come sooner?  Obviously I'm kidding - I won't need the Ativan for another couple hours...

Hang in there - you're definitely over the hump and your numbers are coming up - that's wonderful news!  Thanks so much for updating us.  Sending hugs and margaritas across the Internet :).  Gotta go.  Karianne and I are going walking to scope out some real estate for that citrus business she wants to start....Tongue Out

Jim

onlytoday's picture
onlytoday
Posts: 586
Joined: Jun 2010

Hi Nathan,

 

Thanks so much for your post!  So good to hear from you as always.  Sounds like you are on the mend - but not without the pin-cushion effect on your belly.  Ugh.  What is your diet like?  Sounds like it's not a hit!

I live in New Jersey and was so exited by a pathetic 3 inches of snow the other day.  My family gave me cross country skiis 2 years ago and I haven't been able to use them -due to no snow-  until now!!  I went out on Friday (very excited) with my skiis and all my gear over to the park.  Found a perfect spot- geared up- and off I went.  For about six feet.  Dead  stop.  What???!!!  Looked under my skiis and had 4 inches of clumped snow stuck under there!  Now mind you, these are WAXLESS skiis.  Tried again same thing.

Turns out that if the snow is wet and heavy (which is was) I DO need wax on the skiis.  WHO KNEW??  So with the no snow thing going on I guess I'll pack them up for another 2 years.  GEESH... 

I truly hope you get outside and get some fresh air.  Being cooped up for that long would get to anyone.  This whole process that you are going thru is truly a roller coaster.  Hand on tight!!  You're almost there!

Can't wait to hear of the day that you are sprung and go and play with the kittens.  I'm certain they miss you too.

Best wishes- thinking of you every day,

Donna

 

 

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