Update on Hubby **Update**
Carolyn
Comments
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Carolyn
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,
Kathleen0 -
and this is the crux of all
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))
Peggy0 -
Clinical Trial Option
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.0 -
Hi Carolyn
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.
-Craig0 -
oxaliplatin... maybe take Gemzar
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,
Lisa0 -
Bilirubin Test Orderedlisa42 said:oxaliplatin... maybe take Gemzar
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
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.
Carolyn0 -
Call From New Oncologist
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!
Carolyn0 -
Best wishes on new plancbcardb12 said:Call From New Oncologist
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
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!
Marie0 -
greatLovekitties said:Best wishes on new plan
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
news good luck0 -
Good,I am glad that yourcbcardb12 said:Call From New Oncologist
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
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.0 -
Great News!cbcardb12 said:Call From New Oncologist
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
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.
Kimby0 -
I love Kimby's Mottokimby said:Great News!
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
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.0 -
Marie,sfmarie said:I love Kimby's Motto
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.
I am so glad the
Marie,
I am so glad the stents are working + have relieved your sister's pain. I also love Kimby's motto,0
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