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Update on Hubby **Update**

cbcardb12
Posts: 85
Joined: Mar 2009

My husband met with another Oncologist last Thursday. It was definitely an eye opening experience. The dr. did a very thorough exam, and was very surprised that there was no tenderness or pain in his liver (Never has been, and that the liver was not really enlarged, asked a lot of questions and spent a lot of time going over his records. It clearly showed that he had his very best results while on Folfox w/avastin. He completed 12 tx, and yes there were issues with his hands and feet, but other than that he tolerated the treatments. After that, he took the entire month of December off, and started on Erbitux & Irrintecan in January. Well, that didn't work at all, and now his dr. says there's nothing he can do besides Xeloda or clinical trials. The 2nd (or 3rd or 4th) opinion Dr. questioned why he was taken off the regimen that actually worked! We didn't have an answer for that. We assumed that 12 was it, and you couldn't get anymore, at least no more then. She continued to ask questions, made some calls for clinical trials, and really looked very concerned. I commented that I was sorry we were such a difficult case! She said not at all, that she just really wanted to make sure that she gave the best advice that she could. So, here is where we are. Hubby is going on 30 days off any sort of treatment options, and at the same time, hubby is starting to struggle again with the effects of this disease: He is tired, bowel issues, starting to vomit alot, and really no appetite. The dr. thinks his options are: 1) Go back on Folfox (as soon as possible) 2) Get a PET scan & find out from the Sir Spheres dr if he is a condidate for that, or 3) look for a clinical trial. She is suppose to call us to tomorrow after speaking with everyone involved and come up with a plan of action. Please, please Lord, can we do this now? This has been a real trial, and I think we both are a little tired, and worried. I'm impatient to get it started so he can start feeling better. Who would ever think that he would feel better after having all this stuff pumped into his body?

Carolyn

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Carolyn,

I'm so sorry about all this. It's been very rough on both of you, I'm sure. I pray that an answer will be provided.

*hugs*
Gail

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Carolyn,
You two have been through so much. In my humble opinion, I think a PET scan would be a good place to start right now. I will keep you in my prayers as you make your decisions.

Aloha,
Kathleen

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

and this is the crux of all our stress and anxiety- when the Oncs start questioning "what to do next" with no definitive answer.....it Tees me off and give cancer the power until we take the next steps.

CArolyn, I pray for you and Hubby to take all the information in and make the decision that is best...((HUGSS))

Peggy

1survivor010
Posts: 8
Joined: Jan 2010

I was on a trial drug called Panatumamab in July of 2007-june of 2008 to shrink tumors on my colon and liver. This was a miracle drug for me and resulted in tumor shrinkage and surgeries that followed. I would suggest you ask your onc about trial drugs and this one in particular. Recently I was given a clean scan.

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry you + your husband are going through this. The good news is it looks like there are multi options + your doctor wants to find want the one that will be best for your husband.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Wow - my heart reaches out to you and your husband - this is a tough spot that you find yourselves in.

At least with this new onc, she does sound like she is concerned and wants to be thorough. I also only thought that 12 tx of Oxy was the limit - how interesting that she wants to do more - oh man, I hope your husband will be able to tolerate this.

It is scary when the docs tell you or give you the impression of "what to do next?" When you feel you have fired your last bullet from your gun and things are still progressing - that's one of the loneliest feelings known to mankind.

I'm also convinced that the doctors "don't always know" what to do in some cases, so they begin to "practice medicine" in hopes of stumbling over something. But they are only human, and Cancer is such a big world and when convential treatments fail, there is only clinical trials to do - unfortunately this is all that mankind knows to do as of the year 2010.

The good news is that this onc sounds like she wants to help, so she is providing her knowledge and wisdom and will do all that she knows how to do. Together, we can all hope that these are the best decisions, while we continue to pursue other options.

Some doctors are better than others - I'm sure it is hard for the good ones to not be able to offer something definitive, but with Cancer, there is no absolute answer every time - we are all different and the chemicals mix different within each one of us.

I understand your concern completely and wish I could offer you more than this.

A PET scan certainly seems like a good idea to find out more - wishing you all the best and thank you for your update.

-Craig

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Carolyn,

Sorry your husband and you are going through this. Interesting to me though, because I am kind of in a similar spot as your husband, except I've had more types of chemo already.
I went to my Dr. and got the talk about how I've used up the approved treatments for colon cancer. I also originally responded very well to the Folfox & asked about going on that again. Since I had an allergic reaction to the oxaliplatin in spite of it working well for me, I was told by three different oncs I saw that it could be done, but would be very risky due to the allergy. I had this allergic reaction the first time I got it. After that, I would take steroids for two days beforehand, get more steroids and benadryl during the infusion, and they stretched out the infusion time of the oxy to 6 hours so that it went into me very slowly and they could monitor me. Made for a heck of a long tortuous day, but it enabled me to take a drug that worked very well on the tumors. Without the allergy issues involved in your husband, my thoughts are why not go back to the Folfox? If I could, I would! I believe there are now different versions of Folfox with different doses (Folfox 6 vs. Folfox 4).
I know that the oxaliplatin is rough with all the neuropathy side effects, but if it works-do it!

Also- wanted to mention gemcitabine- also known as Gemzar. It is what my doctor is working on getting approved for me & is what I will be starting on next. I'll have Gemzar with Xeloda, and they might also add in Avastin again.
Gemzar is FDA approved for a few other cancers, but not colorectal. But there have been a couple of clinical trials looking at how gemcitabine with xeloda affects colorectal cancer. According to Dr. Lenz at USC, the results were that about 50% had a good response to it. There is no clinical trial for it going on right now, so I'm at the mercy of the insurance if they'll cover it for me right now. I actually spoke to the insurance yesterday (an HMO) to check on the status & was told that if my onc sends in the request along with a list of what I've already taken, reasons why I can't take the currently approved drugs, the fact that I don't qualify for any clinical trials within a 500 miles radius, and the data from a former clinical trial on Gemzar- then I'll have a very good chance of getting it approved. I'll report back when I know if I get it approved- I should hopefully know within a couple of days.

I think I'd go with the folfox though for now- the response rate is better and it worked for him before and the insurance should have no problem covering it since it's "standard care" for colon/rectal cancer. I just wanted to let you know about Gemzar/gemcitabine with Xeloda and Avastin. This is what Dr. Lenz from USC in L.A. also suggested that I go on & so now my doctor is working on getting it for me. It might be something to consider down the road. Never accept that there's nothing more that can be done- that's when it gets to be more of a pain because you really have to go to different oncs farther away (and you need to go to oncs who are at major NCI centers and are into all the latest research on colorectal cancer- the others won't know what to do after "standard" treatments have been used up).

Take care & I'd also immediately ask for a PET scan to check for cancerous activity and so you can get another PET a couple of months into treatment to compare and check if the treatment is working.

God bless,
Lisa

cbcardb12
Posts: 85
Joined: Mar 2009

Thanks everyone for your comments and concern. This has definitely been difficult, and coincidently, happens to be the 1 year anniversary of his diagnosis. He received a call earlier today from the new dr. to come in to get his bilirubin levels checked. Evidently, this will show signs of jaundice. There is a clinical trial at Emory, but if his level is higher than 2 he will not be eligible for the trial. They are also scheduling him for the PET scan (YAY!!) to see if there is any other cancerous activity. He has an appointment tomorrow at his regular onc, who was talking about starting him on the Xeloda, but the new dr. does not think this will do him any good. If he is going to start back on Folfox, the dr. office will need to call his insurances (BCBS & United Healthcare to get approval to start treatment immediately. Once he get's back with the results of the bilirubin test, I will be calling both offices to find out what both of their thoughts are for tomorrow, and we will make a final decision. I pray there is a consensus on the Folfox treatment, but barring that, he may be eligible for the clinical trial. Will update later today.

Carolyn

cbcardb12
Posts: 85
Joined: Mar 2009

Praise the Lord! My husband received a call from his new oncologist a little while ago. His bilirubin level was at 5.2, too high for a clinical trial. She will start him on Folfox & Xeloda on Friday. She said they are going to be very aggressive with this, and that he is not to worry about this, that there will be set backs, but feels confident that this treatment will have a good effect on him. We are so happy, thankful, hopeful & excited! She will have us come in tomorrow to set the plan together, to figure out how to manage the side effects, and the treatment schedule. This is great news!

Carolyn

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

Glad that the new Onc is so confident in her approach and is transmitting that confidence to you both.

May the new plan be the one to suceed!

Marie

lcarper2
Posts: 638
Joined: Dec 2009

news good luck

Fight for my love
Posts: 1530
Joined: Jun 2009

Good,I am glad that your husband found a doctor who really cares about him and is an advocate for him.Good luck with the treatment and wish you the best.

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Carolyn,

I'm so very happy for you! The best news is that the onc is not giving up. If she is willing to be aggressive, you've got a real winner. Praise God is right!

Outwit. Outplay. Outlast.

Kimby

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Outwit, outplay and outlast. I also love that you have an onc. willing to go to bat for you and even research clinical trials! That's a keper if you ask me. You're in my prayers. They can always "drain" the liver, which is what my sister may have done on Friday. The stints for the kidneys to drain are working and she is much relieved of her pain.

AnneCan
Posts: 3692
Joined: Oct 2009

Marie,

I am so glad the stents are working + have relieved your sister's pain. I also love Kimby's motto,

mom_2_3
Posts: 965
Joined: Nov 2008

Carolyn,

I am glad that your doctor has a good plan for your husband. Prayers and loving thoughts to you both...

Amy

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