Not so good news today

damama24

Went over recent scan with onc today.Some good news is the largest tumor in my liver is shrinking but one of the smaller ones is growing. My chest and lungs are clear but the scan showed a pelvic mass and my CEA jumped another 100 points, On Dec 1st it was 23.7 it
is 228.2 as of today. Onc wants me to do one more round of chemo and then another scan. She also talked about doing chemo directly to my liver. While that sounds hopeful I'm wondering if it will do any good if I have this pelvic mass doing its thing. Its pretty obvious that the chemo is not as effective now as it was in the beginning. We discussed clinical trials but they aren;t doing any now that I would qualify for and it is just not possible for me to seek treatment else where. There are other hospitials in the area that treat cancer and also do clinical trials but most are not covered under my insurance. So it seems I will have to make some tough decisions soon, I know I've pretty much run through all the chemo options approved for colon cancer. Maybe if we do thid chemo directly to the liver it may shrink those tumors enough that they will consider surgery. But then again the pelvic mass may just make surgery unlikely. I'm sorry this is a little bit of a pity party for me, but am feeling strange about all this. I sometimes feel its time to call it quits and then other times I'm willing to try something else.Its just all become so confusing. Sorry for the vent but I know the folks here would understand.
Deb

AnneCan

Deb
It sounds like a bit of a mix of news - great that the largest tumour is shrinking, but not great that the other one is growing, along with the pelvic mass. It sounds like your onc is being careful + Hopefully a good plan will come into place. You are in my thoughts.

Buckwirth

Apply around anyway
You may be able to get an exception from the hospital and/or your insurance company.

If there is an insurance advocate in your state they can also help, others here have had great success with them.

Whatever you do, don't just give up!

Blake

angelsbaby

Buckwirth said:

Apply around anyway
You may be able to get an exception from the hospital and/or your insurance company.

If there is an insurance advocate in your state they can also help, others here have had great success with them.

Whatever you do, don't just give up!

Blake

deb
sorry things could change for the better thats what i am hoping for

michelle

luvmum

Good respond on your way!
I hope you are coping with it well and I hope you will have good respond to whatever treatment is lining up for you!

Will pray for you! Dora

lisa42

something else to consider
Hi Deb,

After reading your post, I just wanted to share with you what I am doing. I, too, "ran out" of the standard chemo options for colorectal cancer. I searched for a clinical trial- found only one I qualified for, but it was already full so I couldn't get in.
I saw Dr. Lenz at Norris Cancer Center at USC in L.A. (I live in north San Diego county). Anyhow, he recommended to me and to my regular oncologist that I should go on gemcitabine (Gemzar) along with Xeloda. This was based on a clinical trial on it that Dr. Lenz had been in charge of a few years earlier. The request was put in to my insurance & they denied it saying, although it is an approved chemo for some cancers, it isn't approved for colon/colorectal cancer & therefore they won't pay for it. Well, it was submitted a second time & denied again. At that point, my husband and I didn't want to wait on treatment any longer for me so we agreed to start it and pay ourselves. That was tough, but we paid for three treatments (and later got reimbursed for it- keep reading).
Next, I gathered all the data from Dr. Lenz's clinical but the sticky thing was that no results were ever published on the clinicaltrials.gov website about it, for whatever reason.(but you can still google clinical trial gemzar and xeloda dr. lenz usc and it should come up for you to read about. So I had to get the results directly from Dr. Lenz & they were decent results that gave me some hope. Anyhow, I submitted all my paperwork, data, and a compelling letter from me to the California state Dept of Managed Care, which oversees all HMO's. I thought it would be a long, drawn out process, but within a week I got a phone call from my insurance co. (Health Net) telling me the dept of managed care faxed them a copy of what I submitted & that they were reversing their decision and would be covering the Gemzar for me and would also be reimbursing me for what I had paid out of pocket. This was a good thing, obviously, because I don't know what we would have done otherwise- we certainly couldn't afford to pay for any more chemo ourselves at that point.

Well, I've now been on the Gemzar/Xeloda/plus Avastin for a year (my onc changed me from Xeloda to the 5FU pump due to some severe issues with hand/foot syndrome & that has helped). Anyhow, my cancer has been pretty aggressive so I'm glad to say that this treatment has stopped it in its tracks kind of acting like a dam wall. Nothing has spread to any new sites in my body (was already in my liver and lungs). This last scan almost 3 weeks ago showed some slight tumor growth, but this has been after a year on the Gemzar. I keep looking for more treatment ideas. Lately, I am also on several body detox/cleanse supplements and extra anti-cancer and antioxidant supplements under the guidance of a naturopathic dr and with the approval from my oncologist.
My onc only asks that I stop taking the supplements 24 hrs before chemo and not resume again until 24 hrs after I get the 5FU chemo pump off (due to unknown possible interactions). I get my bloodwork drawn every week & for the past 5 weeks in a row, the nurses' comments have been "your numbers look great- keep up what you're doing!". That has been encouraging. Even if the supplements only help with my bloodwork and immune system, it's still worth it to me because I can stay on the chemo without having issues or as many side effects. I hope and pray it is also working on those darn cancer cells! One bit of encouragement there, in spite of slight tumor growth (2-3 mm- nothing major) is that the scan report stated that many of my lung tumors show "central lucency". I asked my onc about that (because nothing like that had ever been reported on any of my scan reports) and he said lucency means the area is clear & that could mean the center of some of the tumors are breaking up or dying off. We don't know for sure, but I'm sure hopeful that my next scan will show even more of that and no more tumor growth, maybe even shrinkage!

My point to you is that there are other things out there. Unfortunately, it might take some creativity to get yourself on them & it might take some wrestling with the insurance company, but there are other possibilities.

You take care & I'd mention the Gemzar possibility to your onc- what can it hurt?

Best wishes-
Lisa

pepebcn

lisa42 said:

something else to consider
Hi Deb,

After reading your post, I just wanted to share with you what I am doing. I, too, "ran out" of the standard chemo options for colorectal cancer. I searched for a clinical trial- found only one I qualified for, but it was already full so I couldn't get in.
I saw Dr. Lenz at Norris Cancer Center at USC in L.A. (I live in north San Diego county). Anyhow, he recommended to me and to my regular oncologist that I should go on gemcitabine (Gemzar) along with Xeloda. This was based on a clinical trial on it that Dr. Lenz had been in charge of a few years earlier. The request was put in to my insurance & they denied it saying, although it is an approved chemo for some cancers, it isn't approved for colon/colorectal cancer & therefore they won't pay for it. Well, it was submitted a second time & denied again. At that point, my husband and I didn't want to wait on treatment any longer for me so we agreed to start it and pay ourselves. That was tough, but we paid for three treatments (and later got reimbursed for it- keep reading).
Next, I gathered all the data from Dr. Lenz's clinical but the sticky thing was that no results were ever published on the clinicaltrials.gov website about it, for whatever reason.(but you can still google clinical trial gemzar and xeloda dr. lenz usc and it should come up for you to read about. So I had to get the results directly from Dr. Lenz & they were decent results that gave me some hope. Anyhow, I submitted all my paperwork, data, and a compelling letter from me to the California state Dept of Managed Care, which oversees all HMO's. I thought it would be a long, drawn out process, but within a week I got a phone call from my insurance co. (Health Net) telling me the dept of managed care faxed them a copy of what I submitted & that they were reversing their decision and would be covering the Gemzar for me and would also be reimbursing me for what I had paid out of pocket. This was a good thing, obviously, because I don't know what we would have done otherwise- we certainly couldn't afford to pay for any more chemo ourselves at that point.

Well, I've now been on the Gemzar/Xeloda/plus Avastin for a year (my onc changed me from Xeloda to the 5FU pump due to some severe issues with hand/foot syndrome & that has helped). Anyhow, my cancer has been pretty aggressive so I'm glad to say that this treatment has stopped it in its tracks kind of acting like a dam wall. Nothing has spread to any new sites in my body (was already in my liver and lungs). This last scan almost 3 weeks ago showed some slight tumor growth, but this has been after a year on the Gemzar. I keep looking for more treatment ideas. Lately, I am also on several body detox/cleanse supplements and extra anti-cancer and antioxidant supplements under the guidance of a naturopathic dr and with the approval from my oncologist.
My onc only asks that I stop taking the supplements 24 hrs before chemo and not resume again until 24 hrs after I get the 5FU chemo pump off (due to unknown possible interactions). I get my bloodwork drawn every week & for the past 5 weeks in a row, the nurses' comments have been "your numbers look great- keep up what you're doing!". That has been encouraging. Even if the supplements only help with my bloodwork and immune system, it's still worth it to me because I can stay on the chemo without having issues or as many side effects. I hope and pray it is also working on those darn cancer cells! One bit of encouragement there, in spite of slight tumor growth (2-3 mm- nothing major) is that the scan report stated that many of my lung tumors show "central lucency". I asked my onc about that (because nothing like that had ever been reported on any of my scan reports) and he said lucency means the area is clear & that could mean the center of some of the tumors are breaking up or dying off. We don't know for sure, but I'm sure hopeful that my next scan will show even more of that and no more tumor growth, maybe even shrinkage!

My point to you is that there are other things out there. Unfortunately, it might take some creativity to get yourself on them & it might take some wrestling with the insurance company, but there are other possibilities.

You take care & I'd mention the Gemzar possibility to your onc- what can it hurt?

Best wishes-
Lisa

I'm sure things will change for better!
sending you my prayers and vibes!