Justakid Posted October 11, 2004 Share Posted October 11, 2004 Hey Guys- Boy do I need advise!!!!!!! As ya'll know I have reacted to my "full strength" treatments of chemo (I have already had 6 weeks of radiation/chemo, that's done). I had one round of Taxotere and one round of Gemzar/Carboplatin......I reacted to both treatments. The initial plan was to do 4 full strength treatments. I've had two and the Doctor laid it out for me today. The studies for this treatment were with Taxotere/Taxol. She has told me that I need to decide NOW if I want to continue, she says she will come up with a treatment is I want to BUT there is no data to support that it will work or won't work. She will just be putting something together with no guarantees. I know there are no guarantees with cancer, but there is a portocol that is followed. But I don't know whether to have her come up with an additional treatment or be satisfied with what I already have received. It's a scarey decision and any advise would be greatly appreciated. Thanks everyone!!! Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted October 11, 2004 Share Posted October 11, 2004 Hi Beth, That is a way scarey decision. If it were me I think I would go for it. If you get sick again, just stop. But I think I would , what if? If I didn't TRY. But that's me. You must do what you think is good for you. If you have the support of your family and the mental and physcial strength. TRY!!! It sucks to have to make such a decision after all the side affects you have been through. I will pray you will make the right decision. Good luck Beth you have been through the ringer already. Take care and God bless. Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted October 11, 2004 Share Posted October 11, 2004 Hi Beth, You certainly have been thru a lot. If it was me I would go for it. The most important part battling this disease is a good patient/doctor relationship. I depend heavily on my doctor as to what treatments she suggests. Sounds like you have a good doctor with your best interest. Unfortunately there is no guarantees, but if the means justify the end that's all that matters. Never know what might happen. You can always stop if problems arise. My thought and prayers are with you on your decision and for the best of results. Rich Quote Link to comment Share on other sites More sharing options...
kimmek Posted October 11, 2004 Share Posted October 11, 2004 Beth Ouch, I am so sorry you have to make such a decision. You had Taxol right? Maybe try the taxotere this time, they are from the same tree, just different parts, the bark and i forget which other one. Mom does taxotere and although the first round was rough (not as bad as yours) the second was 100 percent better, and she will have the 3rd round this week. There was a man last time at her chemo that had the same taxotere/carboplatin and he said the first was bad but each time there after the side effects got better. we are hoping that for Mom. I dont know what to tell you to do, but I think if it were me or my mom, i would try anything. Mom always tells me she can handle anything they throw at her, because she knows its not forever and she will feel better in a few days. The doctors told her from day one, radiation and oncologist that they would bring her to the bring of death, make her feel like she was dying and almost wish she were, then she will get better. it sounds like that is exactly what your doc has done to you. although mom i dont think as reached that point, and i sure hope it doesnt get that bad thru the next 2 rounds. there is no easy, clear answer, but when we are talking of your life here, you almost have to do whatever it takes. keep in mind the saying "God never gives you more than you can handle" and put it in his hands and go for it. You certainly dont have anything to lose. Maybe it was just a fluke the first go round. I know you are scared and have every right to be and this is not fair for you and your family or any of us here, and i have no idea what im talking about now, just rambling, Just please know you are in my thoughts and prayers and will pray that an answer comes easy for you and you can get on with the treatment which ever route you chose. May god be with you Kim Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 11, 2004 Author Share Posted October 11, 2004 Thanks guys- The Doc says that these last 4 treatments were "insurance", the typical treatment was the 6 week radiation and chemo combination. IF we continue, there is nothing to tell us that it will be any benefit, it may only make me sicker and we won't gain anything from it. She doesn't know. She mentioned the use of Cisplatin BUT she feels that based on my history it will make me deathly ill, and is scared to use it based on my reaction to Carboplaton. She said it is my decision because treatments like there are what you rad about in the paper, and why there is malpractice insurance and law suits. She will be making an educated guess and we would be "pissing in the wind" (sorry for the lauguage)! Tried Taxotere - severe pain, unbareable Tried Gemzar/Carboplatin - allergic reaction to carbo Asked about Taxol alone - all tests have been done with Carboplatin in conjunction. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted October 11, 2004 Share Posted October 11, 2004 Beth, My oncologist did not give me the option of chemo, he flat-out refused to do it, said he had no proof that the side effects would be worth the little it would add to my survival odds. He said he would okay radiation, but before I started, he wanted me to go for a second opinion. The second opinion was at MD Anderson. They suggested NOTHING, "check into trials".... That being said, had it been offered, I probably would have done the chemo... BUT, were I to have reactions like you're having, my logical brain would have kicked in and said, "Hmmm...this stuff is toxic. My body could be telling me that much more of this will kill me, thereby killing any possibility of a chemo return..." Ultimately, this is your decision to make. Talk to your doctor about the possibilities of an even worse reaction and possible death. It sounds like she is pretty straight with you (as mine is with me). In the end, it's ALL a crap shoot.... Take care, you have my support either way you go. xxoo, Becky Quote Link to comment Share on other sites More sharing options...
JaneC Posted October 11, 2004 Share Posted October 11, 2004 Beth, I'm sorry you're having to make this tough decision. I had Taxol and had the SEVERE muscle and joint pains. I had to take narcotics for about 3 -4 days each cycle to deal with them and was fairly non-functional for almost a week - but with lots of family and friend support it was doable. Also I believe they can "desensitize" you if you have had a reaction to carboplatin. I guess what I'm saying is that even though it has been really rough, they still may be able use those drugs if they think they're the best. I like to ask my docs, "if this were you, your sister, your daughter, etc., what would you advise them?" Having said all that, I'm not 100% sure what I'd do but I think I'd try to complete the chemo. Can you get a second opinion to help in your decision? Sending prayers to you, Quote Link to comment Share on other sites More sharing options...
paddy Posted October 12, 2004 Share Posted October 12, 2004 Whoo Beth!, This is a tough one. I can't help much I'm afraid but I just wanted to say my heart goes out to you and I pray that whatever you choosed to do will work out well for you. Love, Paddy Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted October 12, 2004 Share Posted October 12, 2004 Tough decision Beth. Your doctor is right, all of the data is with carboplatin or cisplatin based protocols so hard to know if whipping up a chemo recipe would help and if so how much. Carboplatin with low dose weekly taxol or Gemzar would be an option with carboplatin desensitization. There are a number of regimens for carbo desensitization out there (it is a huge pain) but it has definitely been successfully done. Here is one protocol: http://www.healthprolink.com/mobile/too ... desens.htm I guess I would say this: You are young and healthy, chemotherapy does improve survival after surgery and carbo or cisplatin based regimens are the best. I would think that if there were some way to get in a couple more rounds of treatment, I would sure want to try. Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 12, 2004 Author Share Posted October 12, 2004 Guess I have alot to think about now! Thanks for all your responces, especially Dr. Joe, I printed our the desensitization....I've had the benedryl and steriods with it before when it was administered. What a scarey uncomfortable feeling to have something injected that made your throat swell, get a rash and almost pass out. I'm gonna have to sleep on it. Oh yeah, just got home from the ER, got a 800mg Mortin lodged in my throat that wouldn't move! Now I have a new Doc, a Gastrointestinal doctor. Have to make an appt with him, we're gonna drop a camera down my throat and see what's happening. Thank goodness that pill finally went down, that HURT!!!!!!!! My life IS a sitcom! Isn't that a show? Thanks God for ER Doctors!!!!!!!!! They can be wonderful! Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 12, 2004 Author Share Posted October 12, 2004 Dr. Joe- Thanks for the picture, it's nice to see who we are talking too. Although note who has not posted a picture........me! Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 12, 2004 Share Posted October 12, 2004 Geez, Beth - the ER again? Did you go to HDH-Forest? Did you have Dr. Andrew - the tall thin guy with dark hair? Pathetic I am getting to know all the ER docs on our side of town. Who's the gastro doc? wondering if he's one my mom has seen. maybe this guy can fix whatever is eating up your throat, literally. Geez. Hang in there kiddo. Karen Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted October 12, 2004 Share Posted October 12, 2004 Gee the ER again Beth! Hope you are feeling better. Please take care! Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted October 12, 2004 Share Posted October 12, 2004 Hi Beth, Did you ever ask your oncologist about the lower weekly dose of chemo as oncodoc suggested in a earlier post. That is how I received my treatment. I did three weeks on and one week off. I started my first round when I was doing radiation. I did not have any trouble with my treatments, until 3-4 months into treatment. That's when my platelet count dropped. Best Wishes, Dee Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 12, 2004 Author Share Posted October 12, 2004 I did talk to the Dr about weekly chemo and she said based on my reactions to taxotere/taxol and carboplatin the only other drug that was studied was cisplatin, which she feels is not a good match for me. The "platin" drugs are the ones to use and I can't tolerate them. Luckily when I had chemo and radiation I was OK. But you can apparently develop an allergic reaction at any time to the platin drugs. Quote Link to comment Share on other sites More sharing options...
lindseysmom Posted October 12, 2004 Share Posted October 12, 2004 Boy that sucks!!! You really have had a hard time. I really am grateful on how well I did with my treatment. Hope things will get better for you. Best wishes, Dee Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted October 13, 2004 Share Posted October 13, 2004 Beth-- Love the pumpkinhead!! Whatever you decide to do, know we're behind you 100%. You can wave whenever you turn north.... neighbor... XOXOXOX MaryAnn Prayers always... Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 13, 2004 Author Share Posted October 13, 2004 Thank you to everyone who posted and the other 400+ people who took the time to read it! I have ALMOST made my decision......I have given 150% to this fight against cancer, I have done everything that every Doctor who has ever seen me during this time has instructed me to do (except when I got sunburn a couple weeks ago). I even gained weight when my Radiation Doc thought it was impossible. I have felt pain on a scale of 1 -10 that measured a 23 (the scale needs to be changed). I have felt pain so bad that I begged my husband to put me out of my misery (which he wouldn't!). I think it is now time to say I have completed my treatment and it is now time to heal! I have the appt with the GI Doc and he is going to fix my throat. I will be making an appt with my PCP and ask him to help bring me back to health. I am going to start exercising, I am going to drop 50 lbs (slowly), eat more fruits and veggies, take a multiple vitamin and do whatever else my PCP tells me would be helpful to maintain good health and keep the cancer away. That's my plan! Quote Link to comment Share on other sites More sharing options...
Ry Posted October 13, 2004 Share Posted October 13, 2004 I wish you all the best with getting your body healthy again. If you go to the Alternative forum you will find lots of articles on what to eat, supplements, nutrition books etc. most of them courtesy of Hebbie. Good Luck! Rochelle Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted October 13, 2004 Share Posted October 13, 2004 Beth, Glad to see your picture and love the hat. I don't have access to a digital camera and even if I did , I couldn't figure out how to post a picture. Take care. Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted October 14, 2004 Share Posted October 14, 2004 Beth - awesome! You go, girl, that's the right attitude! And you're right, it is time for you to heal. And I'm with you on the healthy living and diet. I'll join you on that bandwagon. And I want our families to go camping together next spring - we'll both be svelte, strong and healthy! Karen Quote Link to comment Share on other sites More sharing options...
ginnyde Posted October 14, 2004 Share Posted October 14, 2004 Beth, First, I belong to a Red Hat group and now that I have seen your picture I am going to request that we change it to the orange hat society, cause you look great girl. Second, you do whatever you need to do. We will support you no matter what you choose, but I do think it is time to get your body and spirit healthy. Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 14, 2004 Share Posted October 14, 2004 Beth ~ I have a question for you (and maybe it's already been covered, but I'll ask again!). I saw that you had taxol/carboplatin during radiation, but then when you had it with the Gemzar/carbo combination, you had a reaction to the Carbo? how can that be? Did they ever explain why didn't it happen when you took it with the taxol? Just curious! Also -- I saw that you got a pill stuck in your throat -- UGH!!! That STILL happens to me since radiation! They said that my throat has most likely healed w/ a "stricture" (a narrowning of the throat) from radiation and that I could have a procedure to stretch it, but I'm not ready for any procedures just yet!!! I take a lot of vitamins and if I don't totally relax my throat, they get stuck about half way down and hurt like *$&@!!!!! I have learned to stay totally calm and take small sips of water until I can coax it down. Radiation....it's the gift that keeps on giving. ps -- cute hat! Quote Link to comment Share on other sites More sharing options...
Justakid Posted October 14, 2004 Author Share Posted October 14, 2004 Thanks everyone! Heather- the doc and nurse said that with carbo you can develop an allergic reaction at anytime even after months of treatment, sometimes it just happens. Go figure! Oh - I see a GI Doc next week, he's gonna see whats going on and probably stretch my throat and fix anything else he finds (I hope). I really wanna see him, have a lot of hope that he may fix the pain! What I wanna know is IF the cancer comes back.....am I toast cause I can't take these chemo drugs anymore or is something different used if it returns? Anyone know? Quote Link to comment Share on other sites More sharing options...
Hebbie Posted October 14, 2004 Share Posted October 14, 2004 I obviously don't know for certain, but I would think that IF you needed further treatment in the future, Irissa or Alimta would be an option? Let me know how the "throat stretching" goes -- maybe I'll consider it myself..... Quote Link to comment Share on other sites More sharing options...
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