Stopping Chemo

kathyriddick

I've been thru 2 rounds of chemo (taxotere and cytoxin) and have 2 left but have really been sick to the point I was unable to hold my own head up..I'm really thinking about not doing the other 2..just not sure it's worth it...I was told that it's only going to improve my odds by 5%...has anyone stopped chemo?...I will head to rad after..I can deal with alot but this chemo is really kicking my butt...to the point I'm scared of dying..and having trouble breathing..I have asthma also..have woke up several times gasping for air...it last for a week and then I seem to start feeling better just in time for another round...anyone have any advice...hugs Kathy

Unknown

Hi Kathy.
I went through 2 round of chemo, 10 months each, 2 years apart. So many, many times I almost quit. Like you, it made me too sick to live.
I don't know how much the completion of chemo increased my chances of long term survival, but all that happened when I was 38-40....and I will be 60 this summer.
What seems impossible when we are in the midst of it often becomes a 'no-brainer' in hindsight. I wonder now how I could have ever considered stopping chemo.
No one can tell you what to do, but be sure you are pestering your doctor out of his (or her) mind with your bad side effects and DEMANDING help with them. Don't stop when there are any options for relief out there.

chenheart

Sweet Lady! First of all a big (((((((((((HUG)))))))) Bless your heart; you are having a hard time indeed, and the Sisterhood here is with you in spirit.

I agree wholeheartedly with Zahalene...especially the Bug Your Doctor part. You do not need to suffer in silence~ if the Cancer Center isn't on your speed dial, put it there! I called the Cancer Center for EVERYTHING, from a one degree spike in my temperature to constipation at 2AM . They were helping me in the fight for my very life! And your Doctor and RNs are helping you fight for yours as well.

I urge you not to give up the chemo if this is possible at all. Involve the medical staff; you are taking the chemo, but they are part of your TEAM.

Keep us informed, we care about you.

Hugs,
Claudia

lfly

Hello Kathy
Please don't stop. This is YOUR LIFE. I agree with the other two. Bug them anyway you can. You do NOT have to be suffering so much. There are meds to help you from being so ill. Maybe using a different chemo. Tell them in anyway you know how to make them understand. Take a friend or family member or all of them to your next app. and let them speak for you too. You pay the onc. to take care of you! Make them take care of you.
Because of my own experience I almost died.Then someone told me what I'm telling you.
MAKE them understand or get a new onc.

Good luck. We're here for you. Sending you love and hugs.

KathiM

I agree with the others...have a talk with your treatment staff. TELL them you have the breathing troubles, Taxol is a product of the Yew Pine...many people have allergic reactions to this one!!! They can perscribe an analgesic, at the very least...

By the time I got to the chemo for breast cancer, I had just 6 months earlier finished up chemo/rads/surgery for rectal cancer. I was at the end...got 5 second opinions to find someone to tell me not to take chemo again...sigh...no one did...

I stopped when #5 oncologist, at UCLA breast center, said "You fought so hard the first time, why would you throw all of that away this time by not fighting hard again?"

Water, water, water....I drank 2 quarts the day before, the day of, and the day after infusion. Peed forever, but the side effects reduced alot.

Hugs, Kathi

seof

I agree with the other ladies. One thought to consider: What if...(I know there are way too many of these, but this one has kept me motivated) what if you don't do what the Drs. recommend and you do get a recurrence...will you regret not doing everything you could have done?

Anyway, this is a personal decision only you can make.

Best wishes, seof

Unknown

This may be totally uninformed, but I have a thought. I am guessing that you do not have nodes involved since the oncs. are not having you do Adriamycin. It seems that non nodal positive BC is treated with Taxol, but not Adriamycin. Could this be because, for most people, Ad. is so much worse as side effects go? But perhaps, for those that have a bad, perhaps allergic reaction to Taxoteres, the docs. could do Adriamycin instead? Certainly Ad. is no picnic, but for you, the taxoters sound pretty hard to handle. Just a thought. Ladies - do you know the answer to this?
And let me agree on the idea of calling your doctor and asking for some doctoring. Really, you can use the doctor's time and expertise that is leftover after dealing with patients like me who didn't call once. I want you to get my money's worth for yourself! We do not have to be well mannered patients who eat whatever is set before them like ladies at a dinner table. Complain that your food is undercooked, poorly seasoned, and see what that doc. can do! Ask also for any help dealing with the pain in the form of relaxing drugs (Ativan?), acupuncture, support staff and groups, ANYTHING, slower drips, benadryl, different taxotere. And if you need to put your head down to get through it, so be it. Let the world stop for you while you push through these hard times. Write us everyday - we will help as much as possible. You are worth everything. love, Joyce

kathyriddick

I understand what your saying but if it's only 5% or the nurse said it could be 2 1/2 now since I did half would it really be worth it...this last time I was so very sick and I had alot of trouble breathing (have asthma also)...to the point I would wake up gasping for air ..had alot of trouble trying to sleep but when I could
I was scared to ..scared I wouldn't wake back up..it was awful..I have stage 2 idc with no nodes involved..her2 neg but pov for hormones..no family history at all...do you guys still feel so strongly...I see the dr. on the 16th to discuss all my options...are there any questions that I should ask?...Thanks for all the help..Hugs Kathy

mmontero38

unknown said:

This may be totally uninformed, but I have a thought. I am guessing that you do not have nodes involved since the oncs. are not having you do Adriamycin. It seems that non nodal positive BC is treated with Taxol, but not Adriamycin. Could this be because, for most people, Ad. is so much worse as side effects go? But perhaps, for those that have a bad, perhaps allergic reaction to Taxoteres, the docs. could do Adriamycin instead? Certainly Ad. is no picnic, but for you, the taxoters sound pretty hard to handle. Just a thought. Ladies - do you know the answer to this?
And let me agree on the idea of calling your doctor and asking for some doctoring. Really, you can use the doctor's time and expertise that is leftover after dealing with patients like me who didn't call once. I want you to get my money's worth for yourself! We do not have to be well mannered patients who eat whatever is set before them like ladies at a dinner table. Complain that your food is undercooked, poorly seasoned, and see what that doc. can do! Ask also for any help dealing with the pain in the form of relaxing drugs (Ativan?), acupuncture, support staff and groups, ANYTHING, slower drips, benadryl, different taxotere. And if you need to put your head down to get through it, so be it. Let the world stop for you while you push through these hard times. Write us everyday - we will help as much as possible. You are worth everything. love, Joyce

HI Joyce:
I had no nodes involved and i still went through cytoxan and adriamycin. I was DCIS stage 1. The way my onc explained to me at the time was that they determine your treatment based on your age to give you the best chance of survival. My lymph nodes were clean but they found traces in my blood and that's why they gave me CAF. I think it all depends on how aggressively your oncologist wants to treat you.

mmontero38

Hi Kathy:
I think before you decide to stop treatment, you really need to discuss with your doctor what is the best possible course of treatment. You need to tell him how sick you're feeling and the problem with your asthma. He may decide to change your course of treatment all together and you may not feel so sick. You should also ask him for meds to help with the symptoms. My onc, gave me meds for the nausea and headaches. I was on cytoxan and adriamycin and those really made me ill, but i crept along and finished my 8 rounds. I was done in exactly 4 months. Don't give up yet without talking to your dr first. Keep us posted. Lots of love and hugs, Lili

Unknown

This may seem very shallow, especially in light of the very real troubles you are experiencing. But my take on it is also - Dang, if I am going to be friggin bald, I better at least get the bennies of treatment! Of course you and your doc. know best what is right for YOU. If everyone writes encouragement to continue, and you still decide not to, you will know that it is a VERY informed desicion and I wish you that peace, what ever road you take. Love, Joyce

lfly

Dear Kathy,
I've thought of your situation constantly.

You are not alone in this fight for your life.

Some of us have been there where you are right now. Some have left us forever and more will follow. ALL of us wish you the best! Gather all the information you can. Discuss options with Onc.,family and friends. Whatever you decide do it with peace in your heart.
Remember...you're loved...even from ones you don't know.

Unknown

unknown said:

This may be totally uninformed, but I have a thought. I am guessing that you do not have nodes involved since the oncs. are not having you do Adriamycin. It seems that non nodal positive BC is treated with Taxol, but not Adriamycin. Could this be because, for most people, Ad. is so much worse as side effects go? But perhaps, for those that have a bad, perhaps allergic reaction to Taxoteres, the docs. could do Adriamycin instead? Certainly Ad. is no picnic, but for you, the taxoters sound pretty hard to handle. Just a thought. Ladies - do you know the answer to this?
And let me agree on the idea of calling your doctor and asking for some doctoring. Really, you can use the doctor's time and expertise that is leftover after dealing with patients like me who didn't call once. I want you to get my money's worth for yourself! We do not have to be well mannered patients who eat whatever is set before them like ladies at a dinner table. Complain that your food is undercooked, poorly seasoned, and see what that doc. can do! Ask also for any help dealing with the pain in the form of relaxing drugs (Ativan?), acupuncture, support staff and groups, ANYTHING, slower drips, benadryl, different taxotere. And if you need to put your head down to get through it, so be it. Let the world stop for you while you push through these hard times. Write us everyday - we will help as much as possible. You are worth everything. love, Joyce

I don't know about that---My nodes were clear, w/a small tumor and I was given Adriamycin, Cytoxan and Taxol. I'm not sure how they determine who gets which drug. It must have to do with the cancer cells themselves. I had an overall grade 1 cancer however my nuclear grade was a 3. So maybe that made the Adriamycin necessary. As far as stopping chemo, don't do it. My AC treatments were horrible, and I too felt that I would stop treatments. But I continued and it was not a picnic but I eventually got through it and am glad that I did. Now I can feel that I did everything humanly possible to prevent a recurrence. If it does happen at least I'll have no regrets. Please talk to your onc and ask him if some adjustments can be made to your meds that will enable you to continue. Anything we can do to increase our chance of survival is worth it. Good luck, Eileen

Stormy8281

Hi, kathyriddick.

I went through the first series of chemo treatments A/C, and developed an infection in my portacath. I spent four days in the hospital on an antibiotic IV. The cancer center I was recommended to was supposedly one of the best cancer speciality centers. During my second treatment, I started having a freezing reaction. It was like running out into the snow naked. The nurses game me a prescription for an antibiotic in case I had an infection. The same thing happened after my third session. They gave me a new prescription. (they absolutely said nothing that I definitely had an infection. my husband was even standing there) On my way to the last session, I was feeling really sick; worse than having the flu. After arriving to the center, they had me lie down. A few hours later they sent me to the hospital. My point to all of this is that I was never informed I had an infection, nor did anyone tell me they were testing for infection. I was able to catch one of the drs. of the center on call at the hospital, to tell him how upset I was, and before I finished my comment, he told me that it sounded like I wasn't happy with their treating me and I should find another facility. My mouth almost dropped to the floor. He also told me he was inclined to believe what his staff said. I then said that I was a banker and if our company felt that way about our customers, we wouldn't have a company. He just walked away saying, well that's their policy. I was too sick to run after him, and beat him up just kidding.

Of course, after this happened I had no choice to find another center. I was without treatment for about 6 weeks, and really felt terrific. Because I felt so well, I didn't want to received any more infusions. After all, it was my decision, or one would think. Right now, my only daughter won't talk to me, implying I was using my cancer to see my grandsons. (I was floored, to say the least) Since she's about 7 months pregnant she told me she didn't need all the stress, then proceeded to tell me she didn't want me to call her again. I know I seem to be rambling on, but this last part has just happened, and I still feel like I have been shot in my heart. We did have our ups and downs while she was growing up, but in the last 7 years, we were actually close. Or so I thought. She does live 500 miles from me, so I feel I'll never see my grandsons again. They're 5 and 7.

I have started with my treatments again, not because of the way my daughter is treating me, I 'just' am. Please keep telling me that it's my decision, don't worry about anyone else, or what they say, just take care of yourself. Somehow that advice just doesn't work.

Please do whatever you can to live. You're message struck at my heart and I didn't mean to go on and on.

Lots of Hugs,
Gale

tan39

Please don't stop,i had no node involvement and all clear from mastectomy and no sign of spread, BUT, i want to live without the fear of this hopefully never coming back, you deserve this too. You must get your onc to sort out your breathing, maybe some relaxants, anything to get you to finish your treatment, its got to be worth it..