Possibly Stopping Chemo??
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Hi Kathleen – after the gem/cis stopped working, I did have the spheres, then started on the Folfox treatment. The Folfox treatment makes me tired and low energy, but not as bad as the gem/cis. I also have developed a sensitivity to cold with the Folfox. My dose of the Folfox has been reduced by 20% because my platelet count got really low and I now have treatment every 3 weeks instead of every 2 because my platelets don’t bounce back fast enough. Also my white blood cell count stays a bit low. Wonder why your doc is nixing every treatment for your Mom. Is it because she has mets? Where are you located? Is there another cancer center or oncologist close by? Maybe it is time to get a second opinion. I think with MD Anderson you first send the medical records and they give treatment advice or set up an appt. Others on this site have more experience with that so maybe they can comment. Don’t give up!
Hi Suzanne. Thank YOU for the encouragement. IAnd yes, you were very helpful. It is nice to hear you are at a place that encourages you and fights right along side you. I hate to even think of moving my mom to a foreign place away from many of the people she loves, particularly when her prognosis is so grave. Can you tell me what regimen you were on immediately after Gemzar/Cis? Was that the spheres? Our doc said no way to that. In fact, he said no to everything. If the spheres came after the Gem/cis, what was the next chemo regimen you used — Folfox? Sorry to be so dense. Hope you are feeling well, by the way. Best, Kathleen
Hi lovemymom – your words are so encouraging to me. Thank you so much. As far as advice for your Mom, the treatment I’ve been getting at Winship Cancer Institute (at Emory in Atlanta) has been so amazing that I have not felt the need to go for second opinions, yet. I’m not sure yet what my next step will be, but I will be turning to this board when I have to figure it out. I have not yet been turned down by insurance for a particular treatment that has been recommended, but the doctors did have to jump through hoops with the insurance company so I could get the FOLFOX chemo. I do know that at the cancer center where I receive treatment they have access to programs to help pay, if needed, for treatment. I would definitely ask about that and also get with a social worker at her hospital or cancer center to help with that. I was on gemzar/cisplatin and it also stopped worked for me, then I was offered radioembolization (sirpheres or therespheres). Have you looked into that, or chemoembolization? My CA19-9 has been kind of all over the place, so that number by itself doesn’t necessarily mean something horrible. Please don’t give up on your Mom, her will to live sounds really strong and that can take her a long way. I wish you and your family the best of luck and prayers to get through this crazy thing that’s happening. Hope I was able to help.
Hi Suzanne and congratulations on your strength and perseverance. I don’t know if this is any help, but my BIL has stage iv pancreatic cancer and he stops and starts chemo (Gemzar/capecitabine) when his body needs a break and his ca19-9 levels remain stable (below 100). This has worked for him physically and mentally. From what I can tell from your previous posts, you’ve been battling this dreaded disease for some time now, so you deserve, at the very least, kudos for your strength, endurance, strong will and continuing willingness to reach out and help others. I don’t know if you can give me any direction, but thought it was worth a shot…my mom was diagnosed with stage iv biliary cancer in Sept. Her doc hasn’t been able to say whether its bile duct or gallbladder ca. She had gemzar/cisplatin, which worked initially. Tumors shrunk, ca19-9 dropped from 1600 to 400. Now that it stopped (some tumors increased in size, some stayed stable, ca19-9 went to 900), doctor said that all is left is Capecitabine (xeloda). He referred her to hospice. This may be just me refusing to accept this, but I’ve read about lots of people persevering in the face of terrible news, and I am frustrated that the off-label use of numerous other regimens (i.e., folfox, gtx, adding avastin or tarceva) has been completely cut-off from her. My mom’s ca19-9 has not surpassed base-line and, in fact, is 600 points lower. The supraclavicular tumors and the gallbladder mass are stable. Can you (or anyone for that matter) offer any advise on second opinions or similar experiences. The funny thing is, my mom feels soooo much better than she has since initial diagnosis. Her energy is way up and pain level is way down. Her use of pain medications is far less than it was. Even her doc says the tumor in her clavicle area seems to have shrunk. I will give up the fight if I must, but my gut tells me that it’s not okay for the doc to put my mom in the loss column while she’s still living and willing to fight. Any thoughts? Any idea on where I can turn?
Hi Suzanne, thank you for the reply. Are your tumors now gone? What side effects did you have from the FOLFOX6 TREATMENT?
Suzannegm wrote:Hi jane638 – So sorry to hear about your additional tumors. I had resection, then was on gemzar/cisplatin but it stopped working, then had sirspheres, and then started FOLFOX 6 (which is a colon cancer treatment). Docs could not say if the sirpheres did the trick or it was the FOLFOX, or the combination of both. I would definitely ask your doctors about FOLFOX6. I have had low platelets since right after I started that chemo, and they had to reduce my dose 20% and eliminate the 5-fu push. I am now having to get it every 3 weeks instead of every 2 weeks also due to low platelets. But since gem/cis stopped working, I think my options were limited. As you may have read several times, whatever decision you make is the right one for you.Hi jane638 – So sorry to hear about your additional tumors. I had resection, then was on gemzar/cisplatin but it stopped working, then had sirspheres, and then started FOLFOX 6 (which is a colon cancer treatment). Docs could not say if the sirpheres did the trick or it was the FOLFOX, or the combination of both. I would definitely ask your doctors about FOLFOX6. I have had low platelets since right after I started that chemo, and they had to reduce my dose 20% and eliminate the 5-fu push. I am now having to get it every 3 weeks instead of every 2 weeks also due to low platelets. But since gem/cis stopped working, I think my options were limited. As you may have read several times, whatever decision you make is the right one for you.
Suzanne…I share your anxiety. I don’t have any answers to the many questions you have but, I am crossing the fingers that your scans come up clean.
Best wishes,
MarionSorry, I quoted, but at the bottom of the page, so it was not attached to your message. Please tell me what chemo you were on. Look for my message of today 1/6. Thank you. Jane638
Suzannegm wrote:Hi everyone. Hoping for some advice, but maybe counting my chickens before they hatch. As of my last PET scan in October, I have no active disease and I’m obviously really really happy about that, but I have scans coming up the end of January and another PET the end of February, and I’m trying to get all my ducks in a row for when I see my oncologist at Emory to go over the scans. I know there are a few of us who have had successful treatment and are currently cancer free (or active disease free per my doctors). For those who have been cancer free for a while, are you still having chemo, but if not how did you decide to stop having chemo? Right now the thought of stopping chemo scares me pieces, but I haven’t even had the scans so I may be jumping the gun. I just want to be prepared for whatever the scans show, good or bad. Also, are there any thoughts on what happens if you stop a chemo treatment for a while (as in months), then the cancer comes back, can you go back on the same treatment or does your body adapt and you have to try a brand new treatment? I’m starting to panic myself thinking that if I do stop chemo, then if it comes back, I can’t go back on the same treatment i was on because it won’t work anymore. I’m probably rambling and sure hope this post makes sense. Thanks for any thoughts.Hello. I am very curious as to what chemo you WERE on and what treatments you had to stop this disease??? I had a re-section, then gemzar and just Therasphere. Unfortunately for me, 3 new tumors have recurred so I am trying to decide what chemo treatments is best.
Since you apparently had good results with what you were on, please tell me what it was.
Thank you,
Jane 638
ChicagoI’m sorry I can’t answer your question, Suzanne, but I want to say Good Luck with the scans!! Fingers & toes crossed for good results
Hi everyone. Hoping for some advice, but maybe counting my chickens before they hatch. As of my last PET scan in October, I have no active disease and I’m obviously really really happy about that, but I have scans coming up the end of January and another PET the end of February, and I’m trying to get all my ducks in a row for when I see my oncologist at Emory to go over the scans. I know there are a few of us who have had successful treatment and are currently cancer free (or active disease free per my doctors). For those who have been cancer free for a while, are you still having chemo, but if not how did you decide to stop having chemo? Right now the thought of stopping chemo scares me pieces, but I haven’t even had the scans so I may be jumping the gun. I just want to be prepared for whatever the scans show, good or bad. Also, are there any thoughts on what happens if you stop a chemo treatment for a while (as in months), then the cancer comes back, can you go back on the same treatment or does your body adapt and you have to try a brand new treatment? I’m starting to panic myself thinking that if I do stop chemo, then if it comes back, I can’t go back on the same treatment i was on because it won’t work anymore. I’m probably rambling and sure hope this post makes sense. Thanks for any thoughts.
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