Need some help!

Sandi1

Hi, it's been a while since i have been on here.  My husband has stage 4 colon cancer, he is in his 5th year fighting it.  His body has become toxic to all chemo that is available to him.  The oncologist has decided to send him to University of Penn hospital for a clinical trial consultation.  I know i need to ask questions when we go, but i am having trouble coming up with some because we have never been to one before - does anyone have questions that they think we should ask?  Also, he will be receiving radiation for a tumor on his facet in his back, again we have never been faced with this and we have a consultation on Monday, so i need some suggested questions i should ask.  I like to go armed and ready when we get there, as my husband is too far involved in the whole process to think to ask quetsions.

Any help would be great.

 

Thanks

Sandi

 

devotion10

Hello Sandi … It sounds like a rough time

for you and your husband.  I gather from what you have said that your husband is in his fifth year of treatment for stage four colorectal cancer and that his cancer has been unable to be controlled from all available conventional therapies.

First, I am so happy for both of you that you have been able to share five years together after his diagnosis.  Surely, it has not been easy for either of you … but many simply do not have that length of time after a diagnosis … so as rough as is right now, this is a blessing.

You did not specify, but I assume that your husband has likely had some times his cancers have shrunk, perhaps he has had no evidence of disease, maybe times when his tumors have been stable … but, at this point the cancers have become resistant to treatment. This puts you at a crossroads so to speak as to how you go forward. Many things may be offered to you ... but, you and your husband may need to talk about where you are in this journey together.

I don’t know if any of the information below will be helpful, but here are some of my thoughts …

Peace. ~ Cynthia

Palliative Spinal Radiation

From what I understand, the facet of the back refers to the small stabilizing joints located between and behind adjacent vertebrae of the spine. Colorectal cancer does spread to the spine usually after the cancer has been present in other parts of the body for a long period of time. The spine and vertebral bodies have a rich blood supply and cancer cells can spread to this part of the body by traveling in the bloodstream. I suppose that this is what has occurred with your husband as you indicated he was first diagnosed more than four years ago. I assume this diagnosis has been confirmed with appropriate bone scans, CT, or MRI.

I bet that your husband has been in pain from the spinal tumor, had some incontinence, or had difficulty walking. The good news is many spinal tumors can be treated with very good results, and his pain can also be significantly alleviated.  There are also some benign tumors that can form I these spaces, but it seems more likely given his advanced cancer to be metastases from his colorectal.

Because your husband’s metastatic cancer may not be curable, the treatment goal of having local radiation on his spinal tumor is likely directed at relieving his pain, removing the pressure on his spinal cord and nerves, and preserving his quality of his life as much as possible.

There may not be any questions to ask regarding if your husband should have this palliative radiation if he is in significant pain. But, you can ask what to expect regarding the side effects of radiation: fatigue, nausea and vomiting, and skin sensitivity.  There is also a condition know as pain flare in patients treated for bone metaseses. This is an increase in bone pain immediately following radiotherapy. It is fair that they describe this potential phenomena to you both so you will not be surprised should this occur.

You might also ask how long the palliative relief will last for your husband and have them explain how long it takes for the symptom relief to take affect. The onset of pain relief following the initiation of radiotherapy often takes several days, while the full effects of the treatment may not be realized for several weeks. Therefore, pharmacologic measures, like opioids, may be essential. If your husband has not had this type of medication, ask them to explain the side effects and how to ward off constipation.

Clinical Trials

By participating in a clinical trial, your husband would be helping develop new methods to treat colorectal cancer ... not necessarily finding a way to survive his own cancer.  This is the way that researchers determine whether new treatments are safe and effective.  In addition to all the questions detailed below about clinical trials ... you might want to discuss with your husband how does he envision his quality of life as he goes further in his life journey given he may not survive his cancer. 

Here are some questions you may want to ask about cinical trials:

About this trial

• What is the purpose of the trial?

•  Why do the researchers believe that the treatment being studied may be better than the one being used now? Why may it not be better? 

•  How long will I be in the trial?

•  What kinds of tests and treatments are involved?

•  How will the doctor know if the treatment is working?

•  How will I be told about the trial’s results?

•  How long do I have to make up my mind about joining this trial?

•  Who can I speak with about questions I have during and after the trial?

•  Who will be in charge of my care?

•  Is there someone I can talk to who has been in the trial?

 Risks and Benefits

•  What are the possible side effects or risks of the new treatment?

•  What are the possible benefits?

•  How do the possible risks and benefits of this trial compare to those of the standard treatment?

Rights

•  How will my health information be kept private?

•  What happens if I decide to leave the trial?

Costs

•  Will I have to pay for any of the treatments or tests?

•  What costs will my health insurance cover?

•  Who pays if I’m injured in the trial?

•  Who can help answer any questions from my insurance company?

Daily life

•  How could the trial affect my daily life?

•  How often will I have to come to the hospital or clinic?

•  Will I have to stay in the hospital during the clinical trial? If so, how often and for how long?

•  Will I have to travel long distances?

•  Will I have check-ups after the trial?

Comparing choices

•  What are my other treatment choices, including standard treatments?   

•  How does the treatment I would receive in this trial compare with the other treatment choice 

•  What will happen to my cancer without treatment?

 

 

 

 

 

 

 

serenity101

devotion10 said:

Hello Sandi … It sounds like a rough time

for you and your husband.  I gather from what you have said that your husband is in his fifth year of treatment for stage four colorectal cancer and that his cancer has been unable to be controlled from all available conventional therapies.

First, I am so happy for both of you that you have been able to share five years together after his diagnosis.  Surely, it has not been easy for either of you … but many simply do not have that length of time after a diagnosis … so as rough as is right now, this is a blessing.

You did not specify, but I assume that your husband has likely had some times his cancers have shrunk, perhaps he has had no evidence of disease, maybe times when his tumors have been stable … but, at this point the cancers have become resistant to treatment. This puts you at a crossroads so to speak as to how you go forward. Many things may be offered to you ... but, you and your husband may need to talk about where you are in this journey together.

I don’t know if any of the information below will be helpful, but here are some of my thoughts …

Peace. ~ Cynthia

Palliative Spinal Radiation

From what I understand, the facet of the back refers to the small stabilizing joints located between and behind adjacent vertebrae of the spine. Colorectal cancer does spread to the spine usually after the cancer has been present in other parts of the body for a long period of time. The spine and vertebral bodies have a rich blood supply and cancer cells can spread to this part of the body by traveling in the bloodstream. I suppose that this is what has occurred with your husband as you indicated he was first diagnosed more than four years ago. I assume this diagnosis has been confirmed with appropriate bone scans, CT, or MRI.

I bet that your husband has been in pain from the spinal tumor, had some incontinence, or had difficulty walking. The good news is many spinal tumors can be treated with very good results, and his pain can also be significantly alleviated.  There are also some benign tumors that can form I these spaces, but it seems more likely given his advanced cancer to be metastases from his colorectal.

Because your husband’s metastatic cancer may not be curable, the treatment goal of having local radiation on his spinal tumor is likely directed at relieving his pain, removing the pressure on his spinal cord and nerves, and preserving his quality of his life as much as possible.

There may not be any questions to ask regarding if your husband should have this palliative radiation if he is in significant pain. But, you can ask what to expect regarding the side effects of radiation: fatigue, nausea and vomiting, and skin sensitivity.  There is also a condition know as pain flare in patients treated for bone metaseses. This is an increase in bone pain immediately following radiotherapy. It is fair that they describe this potential phenomena to you both so you will not be surprised should this occur.

You might also ask how long the palliative relief will last for your husband and have them explain how long it takes for the symptom relief to take affect. The onset of pain relief following the initiation of radiotherapy often takes several days, while the full effects of the treatment may not be realized for several weeks. Therefore, pharmacologic measures, like opioids, may be essential. If your husband has not had this type of medication, ask them to explain the side effects and how to ward off constipation.

Clinical Trials

By participating in a clinical trial, your husband would be helping develop new methods to treat colorectal cancer ... not necessarily finding a way to survive his own cancer.  This is the way that researchers determine whether new treatments are safe and effective.  In addition to all the questions detailed below about clinical trials ... you might want to discuss with your husband how does he envision his quality of life as he goes further in his life journey given he may not survive his cancer. 

Here are some questions you may want to ask about cinical trials:

About this trial

• What is the purpose of the trial?

•  Why do the researchers believe that the treatment being studied may be better than the one being used now? Why may it not be better? 

•  How long will I be in the trial?

•  What kinds of tests and treatments are involved?

•  How will the doctor know if the treatment is working?

•  How will I be told about the trial’s results?

•  How long do I have to make up my mind about joining this trial?

•  Who can I speak with about questions I have during and after the trial?

•  Who will be in charge of my care?

•  Is there someone I can talk to who has been in the trial?

 Risks and Benefits

•  What are the possible side effects or risks of the new treatment?

•  What are the possible benefits?

•  How do the possible risks and benefits of this trial compare to those of the standard treatment?

Rights

•  How will my health information be kept private?

•  What happens if I decide to leave the trial?

Costs

•  Will I have to pay for any of the treatments or tests?

•  What costs will my health insurance cover?

•  Who pays if I’m injured in the trial?

•  Who can help answer any questions from my insurance company?

Daily life

•  How could the trial affect my daily life?

•  How often will I have to come to the hospital or clinic?

•  Will I have to stay in the hospital during the clinical trial? If so, how often and for how long?

•  Will I have to travel long distances?

•  Will I have check-ups after the trial?

Comparing choices

•  What are my other treatment choices, including standard treatments?   

•  How does the treatment I would receive in this trial compare with the other treatment choice 

•  What will happen to my cancer without treatment?

 

 

 

 

 

 

 

Thanks Cynthia

I am at the point where we are starting to consider clinical trials, and I think your list of questions will be very helpful.