• How long did chemo last?

    Asked by katiecb on Thursday, June 13, 2013

    How long did chemo last?

    My mom was diagnosed with Stage 4 pancreatic cancer in October, she is getting intensive rounds of chemo every 3 weeks. 2 hours during first round, 1 hour and 45 minutes in the second round and a 46 hour pump she takes home. She asked her doctor today what the plan was, and he said that chemo is working, if it stops, they could switch chemo, is this her quality of life? Is this her forever? Or are their other options? She has second opinion from another doctor in July. Any ideas/good questions to ask doctors?

    4 Answers from the Community

    4 answers
    • Russ' Avatar
      Russ

      Hi katiecb,

      So sorry to hear about your mother. I am a stage III 12 yr survivor. I had 24 hour of chemo for 5 weeks through a pump that I carried with me, and radiation 5 days a week for the same 5 weeks. One does not know how long these things will last...it is different for all of us. It is also based on the severity of the cancer, and as time goes by they come up with different chemo drugs that don't require long treatments.

      This disease is one that is frightening for sure. Even though doctors and researchers have made tremendous strides in their never ending battle to find a cure for cancer it is not something to be taken lightly. Hearing those words, “you have cancer” in itself is very scary. Shortly after my 2nd anniversary of surgery for pancreatic cancer my sister had made the comment to me in one of her emails…“it must be scary to have cancer.” I simply said "yes it is scary." You never know when or where it’s going to show up again. It tends to wear on your mind. Every time you read or hear something about cancer, it sets you back a little. Every time you get a pain you think it is back. When you go to the doctor there are more tests and it just doesn’t seem as though some of the administrative people who handle your appointments and tests have the same sense of urgency that you have. But then why should they? I read where Harvey Martin, (ex-Dallas Cowboy football player), died from pancreatic cancer at the age of 51...he had surgery one year ago. It set me back a few days, but I came back stronger and more determined to beat this thing. Regardless of what lies ahead for me I will continue to fight and try to help others to do the same.

      We all have our own way of dealing with cancer and I choose to tell my story to others. I am not a professional counselor but until someone has gone through what I and millions of others have gone through you cannot tell another cancer victim how they feel…or how they should feel. First the initial shock of hearing that you have this deadly disease called cancer, and then the surgery, and then they tell you that the survival for stage-III of your cancer is 2% for the first three years, and then the radiation and chemo treatments, and then more chemo, and the never ending emotional roller coaster. But I cannot focus on self-pity…or waste my time thinking of how unfair this is to me. I have always been a positive person and nothing will change that...but this is certainly a true test of my strength and determination. And if I can make a difference in just one person’s outlook about how to deal with this disease I feel that I have done something...it makes me feel better.

      I can remember when I first started going for my radiation treatments. Your scheduled time of the day for treatments was always the same. So you end up meeting and talking with the same people every day. All of us sit in this small waiting area that puts you almost in a circle, so you’re facing others. You sit there in your gown waiting for your turn to be called for radiation. Some people try to avoid eye contact while others limit their conversation to just a hello. One day someone new to the group greeted everyone with...”hi, how are you doing?” The one gentleman who had throat cancer leaned over to another patient and said...“that should be one of the top ten questions that you don’t ask a cancer patient. How are you doing? How do you think I’m doing?”

      He was always grumpy and hardly ever said anything to anyone. I just thought to myself how sad for this guy that he couldn’t be more positive. But then as time went by I began to understand. Many people are just plain mad about having this disease and that’s their way of dealing with it, and that’s okay. Others are sad and that’s okay too, and I think all of us are probably frightened to some degree, and that too is okay. Whatever feelings you have about your cancer are all okay! In due time you will realize that it is time to use all of this energy on your recovery process. If you are sad about having cancer...cry, it's okay. I cried in the beginning, but I looked at those times as emotional cleansings. You get it out and move on. I hope and pray for you and your mother in that she does not suffer while undergoing treatments.
      Best regards,
      Russ

      about 8 years ago
    • pancrease54's Avatar
      pancrease54

      Sounds normal to me. Doctors many times discover that a second or third round of lesser known kinds of chemo get great results. I am certain your Mom has been told "Everybody is different" I did 6 months of 24/7 3 weeks on/one week off.(5FU) They tried to kill me but it worked. 2 days before the end of my last month I called my onc to tell him I was near death. Doc said to lay the phone down and pull the needle out of the port in my chest. When I picked back up Doc said it was good I called, I could have spent Christmas in the hospital. Not an exact science.
      Best of luck, sounds good!

      about 8 years ago
    • JMS's Avatar
      JMS

      Dear katiecb - your question is interesting to me because a coupleof days ago, I put one out there that's very similar. So, at least let me tell you what my doctors have said to me about your question. I don't know what your Mom is taking, but I'm now on Folfirinox (which is a combination of 4 chemo drugs). It's much stronger than the Gemzar I was previously on and takes much longer for the infusions. I now have 6+ hours of infusions at the hospital every other week, then go home with a slow-drip bag for the next 48 hours. I'm much more dizzy, exhausted, and feel considerably more nausea than previously. Also have issues with putting food or drink in my mouth (very painful, especially cold things) and cannot pick up or hold anything cold as my fingers begin to hurt as though I'm being stabbed.
      On the issue of how long the treatment period will last, my local doctor indicated I'd stay on this until the drugs didn't work or I could no longer tolerate them, whichever comes first. He might then switch me to a combination of Abraxane and Gemzar as a trial. My Johns Hopkins doctor has indicated much the same thing, with one exception: if my tumor markers come way down after the first 6 months, and my CT scan is clear, she'd consider taking me off chemo for a while to give me a chance to recoup., Then if the numbers start to go back up, she'd start me up again for another 6 months. There are no clinical studies on this - it appears. Also, since use of Folfirinox is fairly new for pancreatic cancer patients, the longest anyone has been using it is around 2 years, so this too does not provide much useful information. You might want to ask the second opinion doctor about on/off strategies and if he/she knows of any studies that indicate how long a patient might be able to put up with this chemo regimen (and what is the longest time his/her patient has been able to remain on the drug)?
      Hope this helps a bit at least. JMS

      about 8 years ago
    • JMS's Avatar
      JMS

      katiecb - let me at least give you the information I do have. I don't know which chemo drug your mom is on (Folfirinox or the Abraxane/Gemzar combination), but I can share with you what I learned at the Pancreatic Cancer Network advocacy day events held recently in Washington DC. There was a break-out session focused on new treatments and developments. The doctors touched on new techniques (such as the T-cells), but there wasn't much that was going to come out very soon. However, I asked them the question about how long was it reasonable to expect a Folfirinox patient to be able to remain on the drug and was it recommended to take a periodic break to allow the patient to regroup and build back up a bit (in other words, is there a point where the drugs designed to kill the cancer end up killing the patient as well because of the cumulative levels of toxicity building up over time). Both doctors agreed that it was a matter of quality of life and should the patient want to "take a holiday" (their words), there's no reason why that can't be done and, in fact, this type of approach is relatively common. For me, I'm having considerable difficulties from the side effects (I have a 6 1/2 hour infusion every 2 weeks, then a take home slow drip for another 48 hours) and cannot imagine how I might be able to manage staying on this regimen in perpetuity. So, I intend to take the periodic holidays as a means of pushing out the time period over which I can tolerate the drugs (and hopefully, at some point, some more effective and curative drugs will come along before it's too late).
      Perhaps your mother might ask about the periodic holiday approach at her second opinion appointment in July. Hope this is at least a bit helpful. JMS

      about 8 years ago

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