What an awesome and uplifting article on your story Tiffany! Thanks for sharing!

Cathy

Great news! Shrinkage is the perfect word!

Hugs!
Cathy

3

(20 replies, posted in Good News / What's Working)

Awesome news Kris! Love seeing when things work!

Hugs!
Cathy

4

(4 replies, posted in Good News / What's Working)

I had written another thread that in mid August I had the TACE procedure done. Took about a week to recover then spent another 3 weeks not seeing doctors. It was actually very scary knowing the volitilaty of this crazy cancer. I had my scan and they showed bone tumors stable (yippee) and some changes to the liver tumor. Now I haven't had any chemo since the beginning of June which is awesome and scary at the same time but my docs felt another go with a stronger dose of TACE was indicated and would be more beneficial than starting chemo. So I had that last week. Definitely more liver activity this time and fevers spiking real high like 104.3. I tend to get fevers with tumor breakdown but this high kept me in the hospital an extra day. So I'm taking longer to recover this time. So I'm back to the same scenario, scan in now 3 weeks with me paying real close attention to any possible changes of my bone tumors or bile activity. So I'm going to keep on swimming!

Cathy

5

(18 replies, posted in General Discussion)

I had a flu shot last year in the middle of my Gem/Cis but I don't know any research behind it.

Cathy

6

(8 replies, posted in General Discussion)

Awesome news Kris! Let the good results roll!

Cathy

7

(14 replies, posted in Good News / What's Working)

Great news Tiff!

Cathy

Hey Dorien,
I can tell you a little bit.  My Doctor and  I chose to do chemo embolization  because of my circumstances.  Everyone is different. I've never been officially staged but my guess is stage 4 since I have a tumor in my liver plus satellites in there, some lymph node involvement and bone mets. I was diagnosed 1/12. I did a drug study for unknown primary to start, then after CC diagnosis switched to Gem/Cis.
I have been on a chemo break for about 2 months.
I have one larger tumor in the left lobe of the liver and it is really high in the dome which is very difficult to access so that was part of the reason for the chemo embo.
I had it done about a week ago on 8/15. The procedure is very straight forward and I was aware of very little or just didn't care. They had a bit of trouble getting through my very small arteries but once they got through everything worked fine. I was in the hospital overnight....I had no nausea, some mild pains more related to my bone mets rather than the procedure. I was really tired for 2 days and pretty much just felt better lying down. As they said I felt minor flu like.  By Day 4 I could get up and around and after a week back to normal. I did get a hematoma at the insertion site but otherwise all is good.
I won't know until Sept 16 when I get my follow up MRI and CT scan how well it worked.
Hope this helps.
Cathy

9

(22 replies, posted in Good News / What's Working)

Great news! Shrinkage is an awesome word!

Cathy

10

(9 replies, posted in General Discussion)

With a one day delay because of insurance I had the chemo embolization or chemo embo as they call it here about 12 hours ago. I had an extremely deep artery followed by extremely small arteries that extended a possible 45 min procedure into a 3 hour one.  They had to use ultrasound and 3 very smart Docs to get through the maze but once they were in placing the chemo was a piece of cake. Needless to say I developed a hematoma at the entry point that was almost lemon sized but was down to pea size in 3 hours.
Of course my family was a bit worried when it took so long but were thrilled I got it done. My biggest issue was all the bone Mets along my spine and my fractured sacrum. Lying flat on your back for 7 hours is not something I would recommend. While lying there they couldn't find a drug combo that would make me feel better but now the combo of Percocet and Ibuprofin has taken care of it. This is the first time I have had this procedure. Follow up MRI in a month.
I have heard energy and activity wise it can take from 3 days to 3 weeks to get back to normal. Is this true?

Just keep on swimming!
Cathy

11

(16 replies, posted in Good News / What's Working)

Yah! Kris! Stable is such an awesome word!

Cathy

12

(9 replies, posted in General Discussion)

Mark, how are you doing with the no cold foods on the FOLFOX? Plus the chemo that goes home? Is that a pain or do you not even notice it?

13

(25 replies, posted in General Discussion)

Good Luck!

Cathy

Mark,
Glad to see the good news. You are one of the few people on this site now that has bone mets and liver tumors. That is where mine are. I just finished radiation of my sacrum ( I have a fracture there) and have had radiation on the sternum, T4-T7 on my spine and my left humerus twice. The next chemo I'm trying is the FOLFOX and I'm glad it's working for you. I hope I am that blessed too.
Great news for you...keep it going!

Cathy

Hi all, thought I would post an update. After I finished my Gem/Cis I tried just the Gemzar on a 3on 1off regimen. I think I had 5 treatments total but never in that order. It was one thing or another that kept me from treatments...rashes, cellulitis, very swollen feet and then finally after 2 in a row a huge drop on platelets. My Doc believed that my body and bone marrow just needed a break. I had been on some type of chemo for about 16 months. I haven't had chemo in 8 weeks. Initially my scans maintained but one of my bone tumors grew a bit and caused a fracture in my sacrum. So I had radiation to treat it. Since I had the break I checked into doing something to get rid of the liver tumor and the Intervetional Radiologist felt based on the location of my tumor that chemoembolization would be a good choice. I'm scheduled to have that done next Wed Aug 14th. Feel a little nervous but very hopeful that this will help shrink/inactivate the tumor. Right now my large tumor and its little friends are located on the right lobe and my left is clear.  After all this is done my Doc wants me to try FolFox to see if I tolerate that better. Any thoughts or comments are greatly appreciated!

Cathy

Thanks for writing your story out. You have a very easy to read way of writing and provide us with so much important information. So keep on keeping on.

Cathy

17

(12 replies, posted in General Discussion)

Sending good thoughts and prayers! Stay strong!

Cathy

Hoping for good news!

Cathy

19

(167 replies, posted in General Discussion)

Dear Pam,
I am so sorry for the loss of Lauren. The entire time I have been following the posts on here she as been a shining light. Through your posts I feel as if I am a part of your family. Her courage and determination as well as your tremendous support and fight for her are encouraging for us involved in the fight. Praying for you and your family to find comfort in the days ahead.

Cathy

20

(18 replies, posted in General Discussion)

Lisa so sorry you are going through this. Hang on and we will keep praying you find relief and an answer.

Cathy

Shel have they given him anything to help with the feet? Mine have been pretty numb for about 15 months. Initially they were painful and it hurt to walk then they gave me some meds and it improved. But the numbness is still in parts but much less pain. I take Neurontin, Cymbalta ( had to fight insurance for that) and B6 100 . If he hasn't tried any of these ask the doctor. It can be very frustrating to not feel well and if something helps maybe that will help him.


Cathy

22

(167 replies, posted in General Discussion)

Pam, keeping all of you in prayers. Thank you for keeping us in the loop by blogging.

Cathy

Thanks all for the input. I didn't really get a straight answer from any of the doctors of the cause. The general consensus is that I may have initially had a mild case of cellulitis but I also was having a radiation reaction in my arm to the the Gemzar and capillaritis in my lower legs again from a combination of Gemzar and just general ankle and feet swelling. I took another full course of an antibiotic and this time after chemo I made it through Thurs. without a hospital visit. Woohoo!

Cathy

Thanks Percy for all the information. The more we know the better masters we are of our treatment plans.

Cathy

25

(23 replies, posted in General Discussion)

When I was in Nashville I applied to stay at the Hope Lodge through the American Cancer Society. It is free and offers rooms with 2 beds and a huge kitchen with locked cabinets and refrigerators to store food to let you cook all your own meals. Plus many organizations would cook for the lodge. It was awesome and I met some really great people.

Cathy