One of the most knowledgable on pancreatic here is @FreeBird drop in on him and he can probably help with questions.
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Question: pancreatic cancer spreading to the bones?
Has anyone had experience of pancreatic cancer metastasizing to bones? Apparently, this is now my situation. The biopsy I had last Wednesday revealed metastatic pancreatic cancer in the area of my sacrum. Given that I've been in active treatment (chemo - both IV and oral forms & radiation) for the last 11 months, it doesn't seem possible that this could have happened, but it has. Now, I'm looking for information and guidance on what to do next. I'll be consulting with the local oncology group in Virginia and going back to Johns Hopkins, but any information or suggestions would be very welcome. Guess I have to get back into fighting mode.....Thanks in advance. JMS
Hi JMS. I am sorry to see that you have this problem. It seems to me from reading that it is not as common for pancreatic cancer to spread to bone, but it does happen. What happens usually after a biopsy is that it's looked at by a pathologist. The pathologist makes a pathology report for your doctor. I would get a copy of that if you haven't already, because this will tell you exactly what they are thinking about the sample taken. Once pancreatic adenocarcinoma, the most common type of pancreatic cancer, has spread, I think it's stage 4. What I would do if you're interested in a second opinion on how to proceed, is ask the Pancreatic Cancer Action Network if they have a list of specialists in your area with the most experience with this type of cancer. www.pancan.org -- that website that I mentioned earlier. They may also be able to give you suggestions for what to bring up with your doctor if your cancer has spread to the bone.
If it is a stage 4 pancreatic adenocarcinoma, my understanding is that the standard of care ranges from Gemzar (gemcitabine) chemotherapy alone, which is what my father had, until the point when it fails to keep working. Then they try other things. Sometimes they use other combinations, and for people who can tolerate it, the "FOLFIRINOX" combination seems to offer one of the better options for life extension. From looking at other peoples experience, it seems to be rough on the body compared to some of the others. It looks like they already tried chemo when you were at an earlier stage... I think you said they used Gemzar and Xeloda. Xeloda is basically an oral 5-FU, one of the other drugs they use. Maybe they will give you the option for a clinical trial, or some other combination of drugs. The last thing offered to my dad was chemo with FOLFOX-- part of the combination I mentioned-- Oxaliplatin, 5-FU, and leucovorin (folinic acid).
I am not familiar with metastasis to the bones. My dad's cancer spread to his liver. So one of the considerations was whether it would be worth seeing another specialist altogether to deal with that situation in the liver, to try things that might be thinking outside the box of the standard of care. It seems to me that if you're going to Johns Hopkins, this is a top notch medical facility, and I hope they would be able to direct you to the right people for your situation. The cancer center here did not offer the information about alternatives outside the standard of care. I had to bring it up and ask about it. They said we would need to see another doctor who specializes in those procedures to ask. So that might be something I would have in my mind to ask about.
The best sources of information I've come across are the National Cancer Institute, which is also available to answer questions, and they responded to me fairly quickly www.cancer.gov They have an informative section on pancreatic cancer, standard of care, and clinical trials
The Pancreatic Cancer Action Network, I mentioned earlier pancan.org They are also very good about responding, and have one-on-one support
The Lustgarten Foundation for Pancreatic Cancer Research http://www.lustgarten.org/
and the American Cancer Society also has filled in some of the gaps for information I was looking for in the beginning www.cancer.org
When I sat in the little exam room with dad, the doctor said he had around six months. That was in June 2012. So we are now at over nine months. He had seven chemo infusions with Gemzar only, before the scans showed that it stopped working. After looking at his other options, he decided that the quality of life was more important for him than quantity of life, so in November, he chose to not continue with treatment, after thinking about it and going back and forth in his mind. His pain has been well-managed, with only one recent bad pain problem related to the cancer in his liver, but they have gotten that under control by adjusting the medications. Overall, I think he has done better than we thought he would. Some days were hard, but then he would have times when he did extremely well. Take one day at a time, and try not to put your mind too far ahead because one problem at a time is much easier to handle than everything at once. I think that's advice that served dad well. He is now receiving Hospice care, just because it makes more sense if he's not going to treatments. They bring all of his pain medications and anything he needs to the house. They provide a nurse, doctor, social worker, medical equipment, drugs, an aide if needed, volunteers if wanted to help with chores, clergy if wanted. It beats driving out to the doctor once a month to have the prescriptions renewed, and then try to find the morphine here. That's really why he decided to go with it when he did.
If I was in your position, and there were no other options to go after the bone problem directly, I think I might try a clinical trial if there is something available that looks promising. That might be a better option, depending on your goals.
What I did with dad was we tried to lay out all the options available for a cancer, then see which ones looked realistic according to the research and the opinions of the doctors, and which had to be ruled out. It's my understanding that there is no known cure at this point in time for stage 4 pancreatic cancer. The five-year outlook is not good at all, but there are some people who do fight on, and do better than others. So we tried to set goals for what he wanted to achieve, what was important to him. Everyone is different, and each situation a little different. For him, it was more important because he felt better when he was not receiving treatment, to enjoy quality of life while he could rather than spend all of his time running around to treatments. For him, and his unique situation, I think this made sense. Here are the options we looked at:
1. Chemotherapy. This really was the only option offered by the oncologist at the cancer center. If he was going to continue, he would have went on that FOLFOX combination, and to be honest, it didn't look that promising to me on paper. The other thing we could have done was seek out a clinical trial somewhere else, or head over to another cancer center for another opinion. Clinical trials might be your best option if you're in fight mode. Pancan.org may help you search for clinical trials that are right for you, using the national cancer institute database
2. Radiation therapy. This was not an option for his secondary liver tumor because of where it was located.
3. Surgery. Not an option for him. Liver is a major surgery. They said even if they could operate, they would advise against it because he probably would not survive the operation. Then there's a recovery period in which he would still have the pancreatic cancer to deal with.
4. Some other procedure outside the box, from an specialist dealing with the problems directly affecting the liver in his case, such as a radio frequency ablation, chemoembolization, or radioembolization that might be used in a liver cancer tumor. We could have gone to see a specialist and ask more questions to see if there were options in this route. With your situation, which is different, I would maybe prepare questions to ask about what other options there are for the secondary bone cancer thinking outside the standard of care if there are any. This might be a question you could ask pancan.org But then you still have the issue of the cancer spreading and how to deal with it with chemo.
5. Complimentary and Alternative Medicine. I really didn't see anything that looked too exciting outside of mainstream medicine. There was some interesting information on the possibility of using intravenous vitamin C in a clinical trial with Gemzar, in an early clinical trial. However, in your case, I think they are saying the Gemzar isn't working anymore. We tried oral GLA from plant oils with Gemzar, based on a paper from the Mayo Clinic that it basically might help the Gemzar to work better, figuring well it couldn't hurt. It didn't appear to do anything. I wish I did know something creative, and outside the box, as long as its backed up by some kind of evidence.
6. Palliative or Hospice care. This is ultimately what dad chose when he decided what was right for him with his situation, and his goals, after trying treatment. Basically the goal is to no longer treat it, but manage the pain, keep as comfortable as possible, and go on living and enjoying life as much as possible, taking one day at a time, one problem at a time, managing the symptoms. He has been on Hospice since January, and they have been more effective at managing the pain than the oncologist alone.
If you are determined to battle onward, like I said, out of all of these things, if I was in your shoes, probably I would listen to the doctor's opinion, maybe get a second opinion, and seek out options for a clinical trial using that great free resource of pancan.org
My husband went in for chest pain, and turned out to be a bone lesion on his sternum (secondary to primary in pancreas).. The oncologist at hospital and Massey Cancer Center stated that spreading to the bone is not A-typical. So without this bone pain, we would have never discovered the cancer.
My husband had radiation on the spot on his sternum, which ease the pain considerably. They also found that the other spots they found have shrunk slightly after his chemo.
I hope this helps. My husbands doctor stated that although A-typical, spreading to the bone and not the liver and/or kidneys does help his longevity, as he has decided no more chemo, due to the incredible side effects, and going for quality of life.
That has happened to me, and I'm getting radiation, which I being told is extremely effective for knocking cancer out of the bone and alleviating pain. Not a lot of treatments are required, and side effects are relatively few. I just started my treatments and feel better already.