Update On Harley - The Cancer Is Back

And I'm devastated.  For those of you who have been following Harley's story, he was doing sooooooooooooo good.   He had been diagnosed Dec. 21, 2006, started treatment January 31, 2007 and he just GOT BETTER!  In fact on August 27th, 2007 his Oncologist stated that he was in "partial remission".  The CT scan showed that all the tumors were just shrinking away!

This helped us really celebrate as we had planned a cruise for Sept. 18th with our family.  We all went, we all had a great time, and Harley was FINE!  He ate anything and everything, especially the desserts :-)

 We got back from our trip Sept. 29th and we were all tired - jet lag and a 3 hour time difference.  So the fact that Harley was tired didn't strike me as unusual as we were ALL complaining of being tired.

Then Harley started having some problems again this past Monday, Oct. 8th.  I spoke with his Oncologist Monday night and she set up a CT scan and an endoscopy, both to be done this week. 

Harley's appetitie is not good and he has vomited 2x in the past 2 weeks.  The last time he vomited, (Monday) there was a little bit of blood in the vomit and that's what the doctor is concerned about. 

Azzie - even though we spoke via email, I just wanted you to know I read your post and am glad you posted for two reasons.  One, so many people on this board care so much about you and Harley and two, your prayer and positive thoughts network will increase tremendously :-)   I was glad to see your post this morning too because I knew you had a long day and lots of driving yesterday.  I am praying for you and Harley and routing for you both!   My thoughts, prayers and love are with you!!!  Please keep us posted!  love karen

Thanks Karen,

I wasn't sure I was going to post the message - not sure why.  I guess by posting it, it seems more real?

And you're right - the more people who read about Harley will hopefully be the more people who will keep him in their thoughts and prayers.

Harley seemed to sleep the whole night last night - he's still asleep and I'm hoping he feels better this morning.

Love and hugs,

Azzie

Harley might be having something called Ascites which I believe is a build up of fluid in the abdomen and stomach which is produced by cancer cells.  In July my dad was complaining of feeling full and we were really baffled by this since he wasn't eating or drinking enough to keep the birds alive.  I believe that they can draw out this fluid with a needle but they usually don't because that increases the risk of infection.  But if Harley is not currently compromised from chemo they might be able to if that is what he has.  I hope this helps.

You and Harley are in my prayers.

Debby

Thank you - I have heard of that and will mention it to the doctor on Tuesday.  However, he will be starting new chemo on that day so they may rule that out.

When he first was diagnosed, he had the same symptoms but as soon as the chemo took effect the symptoms disappeard and he no longer had that bloated feeling.

thank you for your thoughts and prayers.

Azzie

Azzie,

      I just read your post and I am shocked. It is awful how this cancer can grow. I am glad you posted though. Like Karen said, we can all pray for you and Harley and send some positive thoughts your way. I am just so sorry you have to face this again. I pray you get better news about the liver. We all love you and Harley !! 

                                                Pat

 

On 10/14/2007 Patty5 wrote:

Azzie,

      I just read your post and I am shocked. It is awful how this cancer can grow. I am glad you posted though. Like Karen said, we can all pray for you and Harley and send some positive thoughts your way. I am just so sorry you have to face this again. I pray you get better news about the liver. We all love you and Harley !! 

                                                Pat

Thank you Pat,

I think I'm still in shock or denial - not sure which.  All I know is that my heart just aches.   I still can't believe that Aug. 27th Harley was in "partial remission".  Now the cancer in the esophagus is taking up 80% of the esophagus!  That's why they put in a stent, even though Harley thankfully is still able to eat without problems.

We had just returned from our 2 week cruise and Harley did GREAT!  He felt good, walked all over, ATE EVERYTHING.  We have only been back 2 weeks and 1 week ago today is when we suspected the cancer was back.  The endoscoypy on Wed. Oct. 10th is when it was confirmed the cancer was back, bigger and badder than ever.

I don't have the CT scan results yet - hopefully I will get them tomorrow.  I'm praying with all my heart and mind that the liver is still stable.

Karen and you are both right - it's good that I posted because then more people will have Harley on their prayer list. 

Thank you so much for your email.  I will update as we learn more.

Gentle hugs,

Azzie

azzie,

i have been following your story and i am devastated!!   you and harley are in my thoughts and prayers!!  its now dec 18.  how is he doing???

michelle

On 10/12/2007 Azzie21 wrote:

And I'm devastated.  For those of you who have been following Harley's story, he was doing sooooooooooooo good.   He had been diagnosed Dec. 21, 2006, started treatment January 31, 2007 and he just GOT BETTER!  In fact on August 27th, 2007 his Oncologist stated that he was in "partial remission".  The CT scan showed that all the tumors were just shrinking away!

This helped us really celebrate as we had planned a cruise for Sept. 18th with our family.  We all went, we all had a great time, and Harley was FINE!  He ate anything and everything, especially the desserts :-)

 We got back from our trip Sept. 29th and we were all tired - jet lag and a 3 hour time difference.  So the fact that Harley was tired didn't strike me as unusual as we were ALL complaining of being tired.

Then Harley started having some problems again this past Monday, Oct. 8th.  I spoke with his Oncologist Monday night and she set up a CT scan and an endoscopy, both to be done this week. 

Harley's appetitie is not good and he has vomited 2x in the past 2 weeks.  The last time he vomited, (Monday) there was a little bit of blood in the vomit and that's what the doctor is concerned about. 

The VA called us on Tuesday, Oct. 9th and they set up an appt. for an endoscopy for Wed. Oct. 10th at 3PM.  Wow!  I can't believe how fast the VA system works (or at least Harley's oncologist, who is a Stanford Doctor).

The endoscopy took almost 2 hours to do.  The results of the endo were not good - the "beast" is back and is taking over his esophagus again.  The doctor who did the endoscopy put in a metal stent to help keep the esophagus open so that Harley can continue to eat.  So far he hasn't had problems eating, but he gets full very quickly due to the size of the tumor.

I am beyond devastated - Harley has been doing sooooooooooo good - This cancer is VERY aggressive - I knew it was, but had no idea it could grow that quickly in such a short amount of time.

The evening after the endoscopy, Harley had a rough nightt.  I think it was a side effect of the sedatives they gave him, as he vomited several times through the night.  And of course he had nothing on his stomach which only made it worse.   I don't think either of us slept all night and he had a bad headache when he woke up.  Again I think it's a side effect from the meds and not eating anything.  We did stop for a milkshake on the way home Wednesday night, but it was so rich it didn't really set with either one of us.

Today Harley had the CT scan and Dr. Ganjoo (the oncologist) will probably call us tomorrow with the results.  I'm praying so hard that the liver tumors have not started to grow again and that the cancer has not spread to any other part of his body. 

I am still in shock that Harley is going through this again, especially since it happened so quickly.  The GI doctor told me that the tumor in his esophagus was so big that he was amazed Harley was able to swallow at all - which is why the stent was put in.

Since the stent was put in, Harley has had indigestion and a feeling of fullness - I know these are symptoms of the EC, but he was NOT feeling this way before the stent was put in.  Can anyone tell me if the stent can cause the digestive problems?

If you could please continue to keep Harley in your prayers so that we can ask God for another Miracle.  I know it can happen - it did once and I know it can happen again.

Thank you,

Azzie

 

 Dear Michelle,

I'm touched that you have been following our story.  Thank you for your wonderful thoughts and prayers.

Unfortunately, the last CT scan that Harley had (Dec.7th) was not good.  I got the results over the phone (my request, as Harley's Oncologist was away for a few days).  Anyway, the Physician's Assistant called me and he read part of the results.  "..........continuing worsening and increased size and numbers of lesions in liver..........."

Tomorrow (Tuesday, Dec. 18th) we have our appt. with the oncologist and chemo treatment. I am anxious about this appt. but I know that I need to know exactly what she thinks.  I would like her to start a different chemo drug, as obviously the new one that Harley is on (which is a much stronger drug than the first chemo round) is simply not working.

I'm having a difficult time with this, and I know Harley is too, but he remains upbeat I think for my benefit.  We so desperately want MORE TIME!

I'll update this (or remind me, ok?) after tomorrows appt.  I hope that I have some good news, such as starting a different chemo regime - something to look forward to.

Gentle hugs,

Azzie/Pat 

On 12/17/2007 michelle-nj wrote:

azzie,

i have been following your story and i am devastated!!   you and harley are in my thoughts and prayers!!  its now dec 18.  how is he doing???

michelle

 

 

 

hi pat,

 

thansk for the quick reply. i totally know hwat you are going thru and i want you to know that i will include harley in my prayers.

i dont know your regilous belief but if you are interested pls call the ST MATTHEWS CHURCHES - tulsa ok..  they have an emergency prayer line - 918-583-3452    and will include you and harley in their daily prayers.  my friend believes in this line as a miracle!! 

pls keep me updated on your appt results.  if you would prefer to chat directly via email, pls do so..   my address is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

my boyfriend, rod has his first round of chemo this thursday.  i am scared to death as old issues of my mom keep cropping up.  she passed away 10 years ago from what i truly believe was a chemo overdose :(

i feel so sad for my rod because he hasnt eaten much food in the past 2.5 months and im an concerned about the treaments being too severe.

the drs are saying that "he will feel better very soon"..  ugh!!!!!!!  how is that possible,  chemo is gross.   im hoping that the treatment does start to shrink the tumor so he can start eating again.  did harley have the same???   i spoke with the oncologist today and he again confirmed that there is NO cure for this metastisis desease and that makes me sad.  he said that if people do go into remission its only for a short time.  i honestly dont believe that!!!!!!  only gods knows how long.  and maybe until this date he hasnt seen it but that doesnt mean there wont be a new drug in the next few months that will be the cure...  

i will continue to keep you in my prayers..

michelle