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Scan time

Anonymous user (not verified)

Hey all--

Well, it may not be day +100, but the oncologist has decided to go ahead and have my post transplant PET scan. Familiar pains began showing back up around day +28 or so, and I'm guessing that's why we havn't waited the full 100 days. My hunch says something is wrong, but the SCT has totally scrambled my mind-body connection and I can't understand half of the signals my body sends me anyways. We can still say that it's going to look beautiful!

I spent my time in the scanner yesterday at the crack of dawn. It was so difficult to stay still.. it hurts, and it was making things that much more nerve picking. I sure want to know the results... but my doctor's appointment is on Thursday. Knowing these scans are interpreted in about a day, when would you call to bug the crap out of your oncology team?

Every other time, I've waited for the doctor's appointment, but this time I'm really over the dramatics of the doc's office.

If you have any good mojo to share, please feel free to send some my way!

 

-Nathan

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

We are sure hoping for the best, you must be on pins and needles, you have really been through it  Going through this anxiety calls for reading a letter fom our father.  Why don't you try to relax and read some Psalms.  Thinking of you Bill & Becky

jimwins's picture
jimwins
Posts: 2028
Joined: Aug 2011

Mysterious "Magic Mojo" is on it's way :).   Do you ever wonder if the panel on the scanning device console used by the technician has buttons like a modern microwave - you know like "Pizza", "Baked Potato"..."Human Being" ? Surprised.  I can just see the tech putting a frozen burrito in the scanner and hear the automated voice say "Hold our breath....breathe" - LOL.  I suppose that would be one expensive burrito :).

Since your follow up visit is so soon (assuming you mean this coming Thursday), I'd probably wait until then but I certainly understand the anxiety.  Just know you have many caring friends here and please keep us updated. 

Big hugs - Jim

hiccup (not verified)

It was cold enough in there to hang meat, I sure felt like a frozen burrito popping in and out of the machine. There are a bunch of buttons on the thing, but no popcorn button that I could see. If there was one, I might be less interested in entering that infernal contraption!

 

I know my follow up visit is soon, but I get antsy. The PET tech always says they'll be ready "this afternoon." I bit the bullet and called already. My doc's not in, but I left a message to let me know via phone. I think whether the news is good or bad, I'd rather be here where I can pass out on the couch for a few hours afterward.

-Nathan

jimwins's picture
jimwins
Posts: 2028
Joined: Aug 2011

Well, I hope you hear something soon and that it is good news.  Speaking of passing out on the couch - I did that today shortly after lunch :).  Just crashed watching TV and slept for about 3 hours.  I still get tired easily - though I do sometimes have better days now.  Hang in there buddy and you know you can email me anytime.

So would you say you were a cheese burrito or bean?  Wink

Jim

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allmost60
Posts: 3167
Joined: Jul 2010

Hi Nathan,

 I was sick from March 3rd until last week, and I just thought forsure my scan was going to come back bad because I had been sick so much. I figured my immune system was under attack again and couldn't fight off my sickness, and I just couldn't shake my bad thoughts. Well...here it is a week later, my shingles are all healed, my sinus infection is gone and my scan came back clean showing complete remission. I understand how our bodies play tricks with our mind, and how anxious it makes us feel. You hang in there and think some positive thoughts...hopefully there is nothing going on and everything will be just fine. My prayers amd positive thoughts are with you. Let us know what you find out. Sue

DadysGirl
Posts: 318
Joined: Aug 2011

I'm very sorry about what you're going through Nathan... When you mention pain what sort of pains are you referring to? I'm hoping, wishing, and praying you will have clean results and the pains are just caused by chemo inflammation.  Please keep us posted...take care of yourself...

When you call if you let the nurse know how anxious/worried you are about your results, they will let you know earlier.

hiccup (not verified)

Well-- when I first started this whole cancer journey.. I had terrible pains in my liver that also referred to my right shoulder. It is these pains that I am feeling again to debilitating levels sometimes. It's very uncanny and spot on to my earlier symptoms.

 

I did call the Dr. and asked to be told via phone. I see no reason in waiting. BUT for now, I'm referring to the pains as chemo inflammation. Cool

DadysGirl
Posts: 318
Joined: Aug 2011

There you go :)

Do you live alone or have others with you ( wondering when youget the call of course it'll be clean results), then you can go for a burrito to celebrate and make Jim happy...

Sometime people get all sorts ofexcruciating pain for benign reasons, I truly hope it is nothing worrisome... 

Rocquie's picture
Rocquie
Posts: 488
Joined: Mar 2013

I hear what you mean about scrambled body signals and the mind-body connection. I have told my husband, doctor, and nurses that I can't even trust my own body any more. Very disconcerting! I hope and pray that you are "reading" your symptoms wrong and that your scan results are just fine.

I'm sorry you are being left on hold, knowing that your scan has been read, and having to wait until Thursday for the results. Seems so unfair.

(((Big Hugs)))

Rocquie

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

Nathan,

Sending u the best mojo that I have got .....also some super good thoughts and prayers

Carie

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1089
Joined: May 2012

Nathan,

There is a line in one of Shakesphear's plays regarding the mind of a criminal: He says they "fear every bush an officer." 

Well, we cancer survivors fear every pain is a return of cancer. Usually, it is not. My cancer was mostly center-chest and armpit areas, and to this day, both armpits feel swollen and tender. But, there is no cancer there, no tumors -- just a weird feeling, and pain. It is what we live with.

Bless your results. I hope they are what you pray for.

I have had some awesome mojo get me out of some tight spots.   It will work for you !

max

Marydutton
Posts: 14
Joined: Feb 2013

Sorry to hear of your pain. My ex husband gets his cells back tomorrow.  your posts have been an inspiration to me. Praying for you!!

DadysGirl
Posts: 318
Joined: Aug 2011

Thinking of you pls let us know....

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

Thinking of you buddy...hope everything is well. Please let us know when you get a chance. I'm also having pain that I was getting at the beginning of my dx, and like you I don't know what they could mean and don't want to bother my doc unless the pain gets unbearable. Take care buddy and always always keeping you in my prayers! 

Sincerely,

Liz

hiccup (not verified)

As much as I'd love to whip on the board and spread the good word, I can't. The stem cell transplant was a failure, and my mass has grown since.

 

There's not quite a game plan yet, as he's going to contact some people and present my case at a conference. Some of the possibilities are radiotherapy, chemoembolization, or Y-90 radioembolization.

 

Anyone here have these things done to your liver? It makes me feel jaundiced just thinking about doing these things. I hope to spare my liver this kind of damage.

DadysGirl
Posts: 318
Joined: Aug 2011

Hi Nathan, I'm so very sorry... Pls continue to think positive there is still hope no one has told you nothing they can do.. Sct can be a failure, I know next step they do is allo sct but it may be just too early for that as you're still recovering from auto sct... It's hard I know when my Dad was done with 8 rchop he had similar feelings abdominal discomfort and they did early scan and found a little growth no spread just growth then it was onto auto sct... You know the rest... There is still hope even if they tell you otherwise there is stillhope as doctors don't always know... I'm sure you are feeling down but please try to think positive, you're young you will beat this God willing... Your immune system is already weak don't let it be weaker with negative thoughts.. Is it only in liver? Will they do another biopsy to confirm it is same type of lymphoma? Has it just grown or suv uptake has also gone up? I don't mean to ask too many questions but... when will you know more? Did they give you more medicine for managing pain as it is more difficult to be positive with constant pain... There are many people that go into remission even after failed sct.. Will continue praying...   Your msgs are always with happy content I didn't know you had pains until your scan msg... I know it's all gonna go away and you will give us good news soon... It is not inflammation? Sometime I recall docs saying they can get bigger before they shrink... It's been only 28 days so could it be too early for scan so inflammation showing perhaps? I don't know what to say I feel very sad if I said anything wrong please accept my apologies...

jimwins's picture
jimwins
Posts: 2028
Joined: Aug 2011

I'm so sorry the SCT was not successful, Nathan.  (Insert favorite cuss words here) !!!!  I'm glad there are other options being considered.  I know this is discouraging news but please know we are all right here fighting with you. Thank you for sharing with us.

Big hugs to you buddy - Jim

 

Rocquie's picture
Rocquie
Posts: 488
Joined: Mar 2013

Oh how disappointed you must feel, Nathan. I hope your physical pain is under control now. I have not been here long enough to really know you or your personal support system. I hope you have someone close to hug you and know I am sending cyber hugs as well. One thing that really, really helped me through some hard times was guided imagery. I highly recommend the work of Diane Tusek. Her website is very easy to find through Google and you can listen to samples of her work. The first time I heard her voice, it spoke to me on such a deep, deep, soul level that I immediately began to weep. Even now, I only have to listen to one sentence and I am so comforted by her words. 

(((Nathan)))

Rocquie

 

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

What to say?  This is not a good day, we are so sorry.  It does sound like you are in good hands and that your doctors are doing their very best.  We know you won't give up and neither will any of us.  We know there is still a lot of hope.  Maybe one thing that would help is to try to build your liver with natural supplements and diet, just in case.  More prayers for you dear friend.  Bill & Becky

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Nathan,

I'm sorry for your news and was hoping you didn't mind that I added a reply.  You mentioned your liver and it reminds me of my friend who had Hodgkins Lymphoma, Recently she has been dx'd with Breast cancer and a Gastric Leiomyosarcoma  from her treatments for Hodgkins.  The leiomyosarcoma has spread to her liver.  Now most times I get defensive when someone suggests some diet change but she went plant based to give her liver a rest for all the chemos being thrown at it. I started the same aout 6 weeks ago and feel better than I have in a long time.  Your head must be spinning and I don't want to add to your distress.  The inflammation in my body has dramatically decreased and my blood work is remarkable. 

It is hopeful that your doctors have several alternatives for you.  Hang in there and I wish you the best.

Cathy

HD 1989- RADS     HD 1994 - ABVD     IDC  2007 - DBL MX

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

Hi Nathan,

 Dang, dang, dang and dang again!!!!! I'm so sorry you are going through this after you fought so hard to get through the SCT. I'm at a loss for words. Please don't lose faith and remember nothing is black and white....there WILL be something else to try. We are here for you buddy...just tell us what you need. Love...Sue

(FNHL-2-3a-6/10-age62)

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

That really sucks. I was sending all the good mojo I had your way. Next time I'll just run down the street naked screaming this is for hiccup. Best of luck with the next steps. 

Jonathan

girliefighter's picture
girliefighter
Posts: 210
Joined: Mar 2013

I too am at a loss for words right now....al i got is that this sucks major elephant balls (i dont even know if elephants have giant balls)...jus sayin

I will summon up some major mojo for u buddy.....

XXX

Carie

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

 

 

I'm really really sorry Nathan! This really sucks you know what!!! Man, I don't know what to say...just know that I'll be sending a special prayer for you...there has to be something else that will get you to remission. Take care and keep us posted we're here for you!!! (((Hugs)))

Sincerely,

Liz

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