On the Roller Coaster
Well we are back on the roller coaster. **** finished 12 rounds of Folfox 6, 3 weeks ago. He did it with such strength, I was in awe of him. He looks so good. He is at high school weight, running 4 miles, surfing, etc.. His neuropathy is bothering him but he is pushing on.
On Tuesday he had his first after chemo CAT scan. He got the results today and it is not an "all clear" like we had hoped for. (He had a CAT in May and it was clear.) He has a lymph node that is 11 mm so they are ordering a PET scan. Also he has "a small pericardial effusion which is slightly increased compared with CAT on 2/20/09" the oncologist used the term fluid around the heart. Has anyone else had the pericardial effusion? The other organs are clear.
If it is only a lymph node, do they take it out or just go for more chemo? I know questions for the onc.
I have cried, then thought it might be OK, then cried again. Ahhhhhhhhhh!
Thanks for your support.
Aloha,
Kathleen
Comments
-
What a ride
Dear Kathleen,
I'm sorry that I don't have the answers to your questions. I know someone who has some experience with this will respond. Just wanted to tell you how sorry I am that it wasn't all clear. I will be praying for you both. I didn't want to go to bed without you having some encouragement. Your emotions are totally expected. This journey is definately a roller coaster as you say. You are both so strong. Draw close to one another. I pray for the peace of God which passes all understanding for you both.
Blessings to you,
Debbie (gramma)0 -
Thanksgrammadebbie said:What a ride
Dear Kathleen,
I'm sorry that I don't have the answers to your questions. I know someone who has some experience with this will respond. Just wanted to tell you how sorry I am that it wasn't all clear. I will be praying for you both. I didn't want to go to bed without you having some encouragement. Your emotions are totally expected. This journey is definately a roller coaster as you say. You are both so strong. Draw close to one another. I pray for the peace of God which passes all understanding for you both.
Blessings to you,
Debbie (gramma)
Debbie,
Thank you so much. We live in Hawaii so we are 3 hours earlier than the west coast and 6 hours earlier than the east coast. I didn't know if I'd hear from anyone today but I am soooo glad I did.
Thank you very, very much for your prayers.
Aloha,
Kathleen0 -
So sorryKathleen808 said:Thanks
Debbie,
Thank you so much. We live in Hawaii so we are 3 hours earlier than the west coast and 6 hours earlier than the east coast. I didn't know if I'd hear from anyone today but I am soooo glad I did.
Thank you very, very much for your prayers.
Aloha,
Kathleen
Kathleen,
I'm so sorry that you guys didn't get an all clear. **** sounds awesome, I have just started chemo and am encouraged by what you wrote. The fact he is doing normal activities is just great. A lot of people expect us to just curl up in a fetal position ang give up on normalcy(is that a word), not me. I will keep doing what I can as long as I can. Sending positive thoughts and good vibes to you both.
Don0 -
Lymph Node
Kathleen,
Was the lymph node 1.1 cm or 11 cm? The reason I ask is that I was told that lymph nodes in the 1 cm size could very possibly be from infection or some other internal issue. A dear friend of ours had a couple of lymph nodes showing but they all resolved and the doctor felt that they were due to infection issues as opposed to colon cancer. Seeing as **** may have some pericardial effusion could the lymph node be related to that? Where is the lymph node?
We have another friend that was diagnosed 6 years ago with colon cancer with extensive lymph node involvement (all around chest, neck, etc) and after 6 months of FOLFOX/Avastin was cleared. He has been 5 years NED. Other treatments for lymph nodes involve removal and radiation (depending upon location).
I send you my strongest thoughts and prayers.
Aloha,
Amy0 -
Kathleen, I'm so upset to
Kathleen, I'm so upset to hear this. I'll be praying that this is only an infection, like another poster mentioned. BTW... 11 cm is over 4 inches. 1.1 cm is teeny.
I would follow up on the effusion. Find out what caused it!
Meanwhile, praying right now for **** and your family.
Diane0 -
The Roller Coaster of Life
Hi Kathleen
Or should I say Aloha
I was troubled to read your post - the naive part of me thought you guys were over the hills and far, far away.
And I am hoping and praying that you both still are just that - I don't have experience with pericardial effusion so I don't want to speculate when I don't know - I'm very curious on what your onc has to say about it.
On the lymph, I hope it is not 11cm, that is big indeed. Maybe it is the 1.1 as had been mentioned before.
Ol'**** is a bigger warrior than I am - a very tough man indeed, from what I hear.
I just want you to know that I am with the both of you and praying for the best possible result - if it is something, at least you've got it early and **** can jump on it right away and chase it outta' here
Please let me/us know - I know you will.
Your feelings are normal...I think "teary" is the new normal for all of us - once we've been touched.
Aloha
-Craig0 -
kathleenSundanceh said:The Roller Coaster of Life
Hi Kathleen
Or should I say Aloha
I was troubled to read your post - the naive part of me thought you guys were over the hills and far, far away.
And I am hoping and praying that you both still are just that - I don't have experience with pericardial effusion so I don't want to speculate when I don't know - I'm very curious on what your onc has to say about it.
On the lymph, I hope it is not 11cm, that is big indeed. Maybe it is the 1.1 as had been mentioned before.
Ol'**** is a bigger warrior than I am - a very tough man indeed, from what I hear.
I just want you to know that I am with the both of you and praying for the best possible result - if it is something, at least you've got it early and **** can jump on it right away and chase it outta' here
Please let me/us know - I know you will.
Your feelings are normal...I think "teary" is the new normal for all of us - once we've been touched.
Aloha
-Craig
I am truely sorry I hope and pray that he will be ok
Michelle0 -
Dear all
Dear Friends,
I just woke up to get ready for work and I had to stop by here first. I knew you would be here. Thank you so much. Ah yes, the lymph node was 11mm not 11cm.. I was stressed last night, I corrected my post.
Your thoughts and prayers mean the world to us. You give me the umph to get up, get ready and go teach 25, 5 year olds.
**** is going surfing with a good friend today and we are letting our 15 year old take a day of school to surf with Daddy. She just wanted to be with him today.
We'll try to stay focused on our many blessings.... try to keep scary thoughts away.
With appreciation and aloha,
Kathleen0 -
11 MILLIMETERSKathleen808 said:Dear all
Dear Friends,
I just woke up to get ready for work and I had to stop by here first. I knew you would be here. Thank you so much. Ah yes, the lymph node was 11mm not 11cm.. I was stressed last night, I corrected my post.
Your thoughts and prayers mean the world to us. You give me the umph to get up, get ready and go teach 25, 5 year olds.
**** is going surfing with a good friend today and we are letting our 15 year old take a day of school to surf with Daddy. She just wanted to be with him today.
We'll try to stay focused on our many blessings.... try to keep scary thoughts away.
With appreciation and aloha,
Kathleen
Kathleen, I'm sure you know that's less than half an inch. Whew... Glad to hear the correction!
I hope **** and your daughter enjoy their day together and praying that the lymph node is from a minor infection. You didn't say where it's located.
God Bless,
Diane0 -
I bet it's just a falseKathleen808 said:Dear all
Dear Friends,
I just woke up to get ready for work and I had to stop by here first. I knew you would be here. Thank you so much. Ah yes, the lymph node was 11mm not 11cm.. I was stressed last night, I corrected my post.
Your thoughts and prayers mean the world to us. You give me the umph to get up, get ready and go teach 25, 5 year olds.
**** is going surfing with a good friend today and we are letting our 15 year old take a day of school to surf with Daddy. She just wanted to be with him today.
We'll try to stay focused on our many blessings.... try to keep scary thoughts away.
With appreciation and aloha,
Kathleen
I bet it's just a false alarm. You'll let us know how the PET scan turns out?
--Greg0 -
AlohaKathleen808 said:Dear all
Dear Friends,
I just woke up to get ready for work and I had to stop by here first. I knew you would be here. Thank you so much. Ah yes, the lymph node was 11mm not 11cm.. I was stressed last night, I corrected my post.
Your thoughts and prayers mean the world to us. You give me the umph to get up, get ready and go teach 25, 5 year olds.
**** is going surfing with a good friend today and we are letting our 15 year old take a day of school to surf with Daddy. She just wanted to be with him today.
We'll try to stay focused on our many blessings.... try to keep scary thoughts away.
With appreciation and aloha,
Kathleen
Hi Kathleen,
I'm a 808er also. I'm glad that **** did so well with the folfox, I'm always in awe of people who carry on their lives with chemo. Please know that I will be praying also for you also and stay positive!
Donna0 -
Thinking of You
Just wanted to let you know that I am praying that all is going to be ok and that is just from an infection. He sounds amazing at all he is able to do since all this has began for him. Keep us up to date.
Kim0 -
Anxiety-O-Rama
Kathleen and ****:
I'm sending all my my best wishes you way.
When my husband has one of his set-backs, I lose it--tears, stress, anxiety, sleeplessness. Once I get past my anxiety-o-rama, however, I remember how much can be done to either cure this disease or treat it as a chronic illness.
Kathleen, you gotta believe! Stay positive.
Hatshepsut0 -
Thank you
Thank you for all your support. I have checked in through out the day because I get so much strength from you. ****'s echocardiogram is set for Tuesday and his PET scan is on Wednesday. I have been in touch with Dr. Lenz at USC and faxed him the CAT scan write-up. They are amazing at USC. He had already looked at the faxed papers and said the the tests that were ordered are correct. He will look at everything after the PET and echo and let us know if we need to head back out to LA or if we can stay here in Hawaii.
Thank you for your warmth, thoughts and prayers.
Aloha,
Kathleen0 -
Small pericardial effusionKathleen808 said:Thank you
Thank you for all your support. I have checked in through out the day because I get so much strength from you. ****'s echocardiogram is set for Tuesday and his PET scan is on Wednesday. I have been in touch with Dr. Lenz at USC and faxed him the CAT scan write-up. They are amazing at USC. He had already looked at the faxed papers and said the the tests that were ordered are correct. He will look at everything after the PET and echo and let us know if we need to head back out to LA or if we can stay here in Hawaii.
Thank you for your warmth, thoughts and prayers.
Aloha,
Kathleen
Kathleen,
My latest CT scan post 6 cycles of Folfiri/Avastin reported "small pericardial effusion new since previous CT". There were so many other questions about my lungs and mediastinal lymph nodes, subcutaneous nodes, etc. that this kind of got lost in the shuffle.
I go to Dr. Lenz for a second opinion as well and think that he is awesome. He also recommended that I get a PET. Nothing was discussed about an echocardiogram. Perhaps because for me it is a "new" finding?
Best of luck and prayers for ****'s echocardiogram and his PET scan.
Susan0 -
Small pericardial effusionKathleen808 said:Thank you
Thank you for all your support. I have checked in through out the day because I get so much strength from you. ****'s echocardiogram is set for Tuesday and his PET scan is on Wednesday. I have been in touch with Dr. Lenz at USC and faxed him the CAT scan write-up. They are amazing at USC. He had already looked at the faxed papers and said the the tests that were ordered are correct. He will look at everything after the PET and echo and let us know if we need to head back out to LA or if we can stay here in Hawaii.
Thank you for your warmth, thoughts and prayers.
Aloha,
Kathleen
Kathleen,
My latest CT scan post 6 cycles of Folfiri/Avastin reported "small pericardial effusion new since previous CT". There were so many other questions about my lungs and mediastinal lymph nodes, subcutaneous nodes, etc. that this kind of got lost in the shuffle.
I go to Dr. Lenz for a second opinion as well and think that he is awesome. He also recommended that I get a PET. Nothing was discussed about an echocardiogram. Perhaps because for me it is a "new" finding?
Best of luck and prayers for ****'s echocardiogram and his PET scan.
Susan0 -
Thanks
HI Everyone,
Thanks for all the support. After all the tests, we will meet with onc on Thursday. I know all of you know how this feels. I don't think we can fully explain it to anyone else. We are making it through our week. We went fishing on our boat yesterday with our 12 year old daughter and it was so good to get out on the water. Still, every few minutes that feeling hits you in the stomach and you feel like you have to catch your breath. I am praying for peace. I am praying that I can be a strong wife and mother.
Aloha,
Kathleen0
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