December 6, 2013 at 2:03 pm #76946RandiParticipant
Wow, sounds like chemo is really putting a dent in your quality of life. I commend you for at least trying it.
I wonder if there is a less toxic chemo that would help you but not give you these horrible side effects. What does the onc say? I am just saying this because for me, I would want to have considered every option available and then decide. (and you may have already done this, so sorry if I am saying something you already know).
My thoughts are with you and I hope whatever you do will give you peace and comfort.
-Randi-December 6, 2013 at 3:12 am #76945bananaf1shParticipant
Your original post resonated with my doubts about my mom’s treatment, and I found it very helpful. I think you are really honest and brave for having posted it. Thank you.
I am very sad to hear about your experience on gem/cis. I’m sending you warm thoughts for strength and peace.
CarolineDecember 6, 2013 at 1:02 am #76944pamelaParticipant
I am so sorry that the chemo made you feel so bad. I think it is great you made up your mind to give it a try. My prayers are with you to find peace.
-PamDecember 5, 2013 at 5:48 am #76943lisacraineParticipant
I am sorry the chemo did not work out. Praying for your peace and comfort.
LisaDecember 5, 2013 at 3:45 am #76942scheitrumcParticipant
I am sorry to hear you’ve had such a struggle with chemo. I hope this doesn’t sound condescending, but have you discussed this with your oncologist?
In our experience, and I would guess others have had the same experience, sometimes if you don’t ask, they won’t tell…..
I don’t know if it is an insurance thing, a medical protection thing, or something outside of my thought process, but I do know there have been several situations where we were ready to stop chemo – told the oncologist – and the response was “Oh, we can do this to help”. For example, after the first 6 cycles of Gem/Cis (as you know very toxic), my wife was in such pain (nausea, listless, no appetite, etc.) that we cried together while deciding to stop chemo.
We meet with our oncologist, explained the situation, ans was informed ” Well we can put you on Emend for nausea and steroids for physical strength”. Duh????? Where was this before ?
I am suggesting do NOT accept that you struggle with chemo until you’ve asked (then challenged) your onc. to explain to you why they cannot help you deal with chemo further.
Having said that, my wife benefited from the chemo regimen – to which we are very grateful. So you also need to make sure it is effective before continuing with this challenging process.
My best to you.
CarlDecember 5, 2013 at 2:09 am #76941ladylindenParticipant
Dear Kris, Thank you for your note. Comfort is the only option I see. Please try to take care, Kris.December 4, 2013 at 11:19 pm #76940kris00jParticipant
To chemo or not is an extremely personal choice. I am sorry you had such bad reactions to the chemo. At least now you can say you gave it a go.
I don’t know much about how your journey will go now, but know my thoughts and prayers are with you.December 4, 2013 at 8:54 pm #76939ladylindenParticipant
Hi, I’m on Cis/Gem every other week. I gave it a try but after two chemo treatments, I’ve cancelled my future appointments. The first time I was somewhat hopeful but after spending 9 days in bed with extreme fatigue, extreme soreness in the abdomen that felt like I fought and lost! all month, I went for my second chemo treatment. I’ve been sick every day. I am taking meds for pains, dizziness and do not have the strength to eat. I have been much to tired to even go to the doctor. I feel that I am getting better, but not to the point where chemo will be a breeze. There’s other issues, too. I plan on spending my remaining time at home and find solace and comfort here. I reached out to the community and decided why not try it. Well I have, but I’m done. I know the way I feel is not as bad as others have felt. The courage of the members is absolutely amazing. I appreciate your quick response to my inquiry “to chemo or not to chemo?” I hope you are able to find some happiness in your holiday season.November 3, 2013 at 9:01 pm #76938lisacraineParticipant
Hello Lady Linden,
I am a little late in posting but I was diagnosed in 2010 and after a resection chemo was recommended. I was so afraid like, Mary, that I would be sick and my quality of life would be poor. I had a port placed which was great and proceeded with chemo. I remember the first treatment sitting in the chair waiting for something awful to happen and nothing! We went out to lunch after. I did have fatigue and minor nausea that was treated with zofran. I since have tried three other chemo regiments but my tumors were not very responsive to chemo. I have had great success with steriotactic radiation and the only side effect was some minor fatigue. I like Percy’s advise, try 6 rounds and get a CAT scan to see if it is working and also ask about radiation. If you would like to talk to me please feel free to call me at 330-903-6868.
LisaNovember 3, 2013 at 12:15 pm #76937RandiParticipant
To do or not to do chemo, as others have said, is a very personal decision. I too was very hesitant and scared of doing chemo. I had had radiation therapy for breast cancer previously and was grateful that I did not need chemo at that time. When i was diagnosed with this cancer, the thought of doing chemo scared me to death. I had all these images of losing my hair, walking around looking like sick, nausea, etc.
I was lucky and able to have surgery (Whipple) and the choice to do chemo was mine. They could not tell me that it mattered if I did it at all. My husband and I talked about it. I decided to do it so that I would have no regrets with the understanding that I could stop at any time.
I only had Gemzar, which I am told is the most “tolerable” and the only side effects I had were fatigue toward the last 2 cycles, nausea which was controlled by medication (Ativan), and some intestinal ‘disruption’.
Obviously, my situation was different from yours, but the decision process is somewhat the same and still very personal. I have no regrets. But again the decision is so very personal.
What I like from what other people said is that if you start it, you can always stop it.
Best of luck to you and please keep us posted on your progress. whatever you decide will be right for you.
-Randi-November 3, 2013 at 2:18 am #76936daisyParticipant
My mom is taking only Gemzar no Cisplatinn….we went to Sloan and the oncologist knew my hesitation regarding chemo. I read all the time that it is not very effective. I was happy to see that he put her only on the Gemzar. The standard of care is usually the gem/sim combo. I felt that he knew how important quality of life is and did not throw an intollerable treatment her way. She walks or runs every day and feels great. Very few side effects…just another idea to think about.November 2, 2013 at 5:03 am #76935pattimeltParticipant
I am 67 & was diagnosed a year ago with the exact same Stage IV, inoperable intrahepatic bile duct cancer. I 1st went to see a surgeon who determined it was inoperable then he sent me to see the radiology oncologist at UCI. I had 2 SIRT treatments of radioembolization. They did not shrink my tumor. I then went on 2 rounds of Gem/Cis with no bad side effects except my blood count went way down & my tumor marker #s increased. Then went on Oxaliplatin/Xeloda with worse side effects. I had horrible sores on my legs. Then had an MRI showing my tumor had grown. So none of the treatments have worked for me. I am now on a chemo break. My oncologist said even if I had more chemo it would only give me 3 – 4 months than with no treatment. I feel great. No symptoms at all from the cancer. Just fatigue. My oncologist said why not take a few months off chemo & enjoy feeling good! I will see her every month to check blood & then another MRI to see how the tumor looks. It is a little scary not having any treatment. I am trying to see another surgeon for 2nd opinion.
This disease is crazy. Seems like everyone reacts differently to treatments. I believe with all my heart that God is the Great Physician and will lead me to the right decisions regarding further treatment options. I am not sorry I tried chemo & if it had worked I would probably still be on it.
God bless you!November 2, 2013 at 3:09 am #76934pfox2100Member
Thanks Pam, I am trying. I am responding well to chemo having shrinkage and my ca 19 9 is all wnl now. So I feel hopeful that things are going in the right direction and I have to believe that bc I will do everything in my power to fight to be here for my children. I don’t come on this site as much as I did a couple months ago but read up when I can. Take care of you.
PorterNovember 2, 2013 at 2:58 am #76933pamelaParticipant
Thanks so much for your sweet message. I’m sorry I haven’t been on the site much since Lauren’s passing, but some days it takes everything I’ve got to get out of bed! I do try to read everyone’s posts and comment here and there. You seem to have the same spunk Lauren had. That’s a good thing! This cancer thing is no picnic. I hope you have a great support system, because I think that really helps. I hope we can chat more in the future. Hang in there. I’m in your corner.
-PamNovember 2, 2013 at 1:54 am #76932pfox2100Member
Hi Pam I have never reached out to you much but read your stories all the time. I remember reading that your daughter was quite young like me. I sure do admire her strength and determination and I am sorry for your loss. I feel the same way in regards to if there is anything that can shed a light of hope or benefits to helping me beat this cancer I am willing to try. I need to give it my all so I can look back and tell myself I tried everything. I have really appreciated your posts over the last few months. Thanks.
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