• my family is really scared chemo will wipe mom out. Has anybody tried radiation only due to same fears. Any regrets or positives?

    Asked by jodir on Friday, July 26, 2013

    my family is really scared chemo will wipe mom out. Has anybody tried radiation only due to same fears. Any regrets or positives?

    Also, we're hearing so many conflicting reports of oral chemo side effects. I'd appreciate any first-hand experiences anybody would like to share. Thanks.

    18 Answers from the Community

    18 answers
    • SueRae1's Avatar
      SueRae1

      I have been on both oral and IV treatment plans. On a whole I found the side effects of oral chemo to be more tolerable. this is due to the fact that I took a pill everyday, so that my body was able to to stay steady and my energy predictable, with IV treatment you need more pre-meds to mitigate the side effects of the massive dose of chemo you are getting. The combo of all that in sitting, as it were, knock me on my A* starting about 24 hours after my treatment finished and lasting about 24-36 hours depending on which cocktail I was on and where in my infusion cycle I was. With infusion therapy you have on and off weeks, the schedule is determined by what you are being treated for and with.

      My first round of oral chemo was 4 weeks on, 1 week off. The next two were just continue taking the drug, unless I need to stop, for example when I had my lumpectomy and my cataract surgery.

      If you can let us know the name of the chemo we could give you more information about the side effects of that particular drug.

      Best of luck, hugs, healing vibes and prayers. If your mom is in good shape, which it sounds like from reading your journey, do not be too concerned with fatigue,

      about 8 years ago
    • Russ' Avatar
      Russ

      Hi Jodir, I had adenosquamous, carcinoma, Pancreatic cancer. It was treated very aggressively with 24 hour chemo for 5 weeks straight, and radiation at the same time. I always got a kick out of the two oncologists...whenever I talked about my latest side effect, the chemo oncologist said "oh that's the radiation; and the radiation oncologist said "oh that's the chemo that's doing that. I could never tell the difference because I had chemo and radiation at the same time. I did however suffer from fatigue for a very long time. I think that was the 24 hours, 5 weeks non-stop chemo that was responsible for the fatigue. Remember one thing...we all react differently to the many chemo drugs that are out there...unlike radiation where I believe there is only one type. I wrote a book about my life, pre, during, and post cancer. On my journey I have listed all of the side effects that I experienced. Take into consideration that I had 24/7 chemo, and radiation 5 days a week. I hope that we have helped you here...it seems like SueRae1 has a better idea of the drugs that you may be on. Take the parts that you think pertain to your mother, and toss them around with your mother, and other family members. Don't take your mother out of the equation...it is her body. Okay...now I am through, good luck.
      Russ

      about 8 years ago
    • Cellkiller's Avatar
      Cellkiller

      The more we are afflicted in this world, the greater is our assurance in the next; the more sorrow in the present, the greater will be our joy in the future.
      Blessings Cellkiller

      about 8 years ago
    • Bees' Avatar
      Bees

      I had abdominal radiation and if I had to do it over again, I WOULD NOT DO IT! I had a horrible time with it and it has been almost 3 years and my body is so messed up due to the damage and scar tissue. I've had 2 surgeries and a possible one in the future due to just the radiation damage. It was aweful, but i don't know where yours will be. That may make a difference. I did not or can not see any positives of radiation in my situation. Just my opinion. Good luck to you. No treatment option is an easy one. Hang in there:)

      about 8 years ago
    • sandikf's Avatar
      sandikf

      Everyone reacts differently to different treatments. I myself had no problem with chemo other than being droopy a few days to a week after each round. radiaiton on the other hand knock me for a loop.

      about 8 years ago
    • Bigmama's Avatar
      Bigmama

      Everyone reacts differently to treatments but my daughter has stage 4 glioblastoma is on timed oral chemo and radiation 5 days a week its rough a lot of nausea alot of fluids help

      about 8 years ago
    • lilymadeline's Avatar
      lilymadeline

      Xeloda? what kind of oral chemo??? there are many different kinds, but I am on Xeloda and I have been off and on it for 3 years. I can tell you a lot about Xeloda, please let me know if that is the kind that they are offering to your mom.
      I've done intravenous chemo as well and also radiation. they all have SE and every body responds differently. But honestly I would go with the most aggressive treatment to fight this beast!

      about 8 years ago
    • lilymadeline's Avatar
      lilymadeline

      p.s. in general chemo pills are much easier to tolerate than intravenous chemo...I've done both.

      about 8 years ago
    • ladyhawk's Avatar
      ladyhawk

      chemo will affect everyone, young and old differently, if your mom was in great health before this, and active, she may be able to tolerate it,, but than again, its depends on how much and how many weeks they want her on it!,,, this is why your need to sit with a hospital social worker for extensive questions and answers.

      about 8 years ago
    • geekling's Avatar
      geekling

      The whole kit and kaboodle of cancer 'treatment' is that it sux.

      If you trust your doctor, ask your Mom to do what he orders.

      If he is just offering palliative care, consider something else.

      You can have family discussions ad nauseum but the final decision is 100% up to your Mom.

      Her age and state of strength are also a factor.

      Best wishes for a great outcome.

      about 8 years ago
    • junie1's Avatar
      junie1

      everyone here has some great words. I had both chemo,& radiation. Chemo wasn't that bad, no hair loss for me. just tired, i was also working a full time job at a grocery store. but i just kept Radiation wasn't that bad, little like getting a bad sun burn,, I did what ever the doctors said,, i just wanted to get it over with!and get on with my life.. That was 19 yrs ago.. Good Luck,, I'm not one on lots of research, i get too confused as to what all is being out there, and reading stuff just confuses me more.. Side Effects will come,, no doubt, but if your mom's dr. is for getting your mom healed, he should be able to answer your questions. God Bless, all,, june

      about 8 years ago
    • MizJill's Avatar
      MizJill

      Hi Jodi.... My hubs is doing the radiation/oral chemo at the moment. He is a bit extra tired; takes a nap in the afternoon, but do not fear the oral chemo! We have been amazed at how tolerable this treatment has been. He has lost some hair directly over his tumor site, but not his whole head, nor his eyebrows and lashes. We have a 45 year old woman at exactly the same treatment stage whom we see at the hospital and you can't even see her bald patch unless she shows you. (My hubs just had thin, greying hair so it's more apparent.) The oral Temozolomide is a breeze; he just takes it at bedtime and sleeps through it. He takes an anti-nauseant *just in case*, but that causes constipation, so the Docs keep suggesting that he drop it.

      So... positive, positive... go for it, Mom! We have just one week to go and it's not been bad at all! (Notice, I use the Royal 'we'.... you will too, probably... you really go through this with your loved one step-by-step! Good luck and love! Jill

      about 8 years ago
    • jodir's Avatar
      jodir

      Thank you to everybody who responded to my chemo question. I hope I'm posting this in the right place, I'm generally a computer idiot.

      Sue Rae, we just consulted with a brain cancer specialist today and the chemos being suggested are Temodar (temozolomide) oral given 5x per week for 4 weeks combined with Avastin given IV one time every 2 weeks for 12 months. This is part of a clinical trial at UCLA. There is no radiation in this treatment protocol as Mom is 71 and they say that radiation is possibly more detrimental to a 71 year old brain than it is helpful-her tumor was very large and would require a very large area of radiation. Doctors offered three treatment options-mom seems to be moving toward this one. All of your responses have helped her to get more comfortable with the prospect of chemo.

      During all of our decision making efforts, I realized today, it must be very hard to actually determine exactly what is making patients feel sick. Between chemo, radiation, and the tumor itself...it must be hard to differentiate which is causing the nausea, diarrhea, fatigue..

      Radiation is still up for discussion, but we have many factors to consider. MOM has a genetic thing called EGFR 3 that they believe makes cell division of tumor more aggressive than normal and radiation may not be good for that. They have medicine that they believe help slow the cell growth, Lapatinib, but my family is against it (although I am not), with this drug radiation could be used. Does anybody have any experience with the Lapatnib?

      Sooo much information and so little time to decide-ugh. No matter what it's all up to MOM, and I'll stand behind any decisions she makes. Her tumor is glioblastoma IV-it's terminal :( We are just trying to find the best way to extend her life and maintain quality of life as long as possible. We just wish there was more time to decide and more time to live-well.

      Thanks to everybody who reads this, we can use all the help we can get. My thoughts are with you all...Jodi

      about 8 years ago
    • marlo1130's Avatar
      marlo1130

      Steroids kicked my butt.....radiation was manageable,,,came home took a nice nap.....I have inoperable astrocytoma. getting ready to start chemo after 8 yrs of remission.

      almost 8 years ago
    • PattieB's Avatar
      PattieB

      Jodir, just doing research for my Mom and our family. How s your Mom? Mom has a glio as well. Surgery 9/3 surgeon was optimistic and now I notice a different thought Pattern. But, there s No integration of treatment among the neuro surgeon, oncologist, and radiologist and floor hospitalist. Mom just finished day 22 of a projected 30 day radiation treatment band has been on temodor (oral chemo) too. But the combination of radiation, oral chemo, resection surgery and the tumor itself s wiping her out. It is such an emotional roller coaster for Mom and all of us. It is so hard knowing what to do. York Mom s ahead of my Mom w/he dawns and treatment anyways wondering if you were up to sharing where things are at and what you and your Mom (and family) felt was worthwhile. With kind rewards and caring, PattieB.

      almost 8 years ago
    • DaveWaz's Avatar
      DaveWaz

      A very dear uncle was diagnosed at the age of 81 with Glioblastoma. At the time he opted for surgery and then radiation. He did very well with the surgery and the radiation did tire hime but he also tolerated it well. At a later time, 6 months, he received a more direct radiation to the tumor area. When he started to regress he received an IV treatment and could not tolerate it and at that time decided to end treatments. One thing I did learn through this process is the fact that all of us want to live as long as possible and the extra time that radiation and chemo gives the individual brings some acceptance to the terminal disease. Blessings to your mother and the family.

      almost 8 years ago
    • PattieB's Avatar
      PattieB

      Dave, thank you for your reply. Maybe that will be the only gift in this. The process is helping with acceptance. It is such a mean and ugly disease.

      almost 8 years ago
    • PerryLowell's Avatar
      PerryLowell

      Jodi,

      My sister has inoperable GBM, she was diagnosed in June of 2012, had Temador and radiation and has been in remission until yesterday. They're going to start her on Avastin now, which has good results for recurrent GBM in giving a few more months.

      She didn't tolerate Temador well, as it plunged her platelets, and had to be taken off it, but radiation was easy on her. Most of her symptoms seemed to be because of the tumor itself, and not the treatments, other than the platelet thing which left her tired.

      -Perry-

      over 7 years ago

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