IMPORTANT CANCER INFO FROM LISA MASON, PLEASE READ !!!!

redhead65 · ‎05-16-2015

I AM POSTING THIS HERE AT LISA'S REQUEST. PLEASE SPREAD THE WORD ABOUT THIS TO EVERYONE YOU KNOW WITH CANCER AND TREATMENTS, THANKS !!

October 1, 2015

Lisa P. Mason

10 hrs ·

Friends. A confession. Gino almost died on August 14th. I got him to the hospital just in time. It seems that My Beloved has something known as DPD deficiency. A "silent" genetic mutation found in approximately 26 million Americans. Harmless unless the person is diagnosed with cancer and is given the chemotherapy drugs 5FU or Xeloda. Although the drug manufacturers disclose it, oncologists are not required to disclose the FDA Black Box warning. In essence, if a person is DPD deficient, his/her body cannot eliminate the chemotherapy. It just stays in the body and burns it from the inside out. Often times, it is fatal. I am beginning a grass roots campaign called "Rare, but there." Please, please if you or someone you know has been diagnosed with breast cancer, colon cancer, rectal cancer, esophageal cancer, head and neck cancer or ovarian cancer, I BEG you .... Google search "DPD deficiency and 5FU" or "DPD deficiency and Xeloda." I also beg you to share or post this everywhere you can. If you are on QVC's or HSN's chat rooms, please post. If you are on a cancer forum, please post! I shutter to think of the lives lost needlessly because patients/caregivers didn't know about DPD deficiency. If you want to join me on this campaign, I welcome it. God bless you! Please share everywhere...

cah · ‎03-19-2010

I shared this on my Facebook too!

That's how we roll in the shire..

PINKdogWOOD · ‎05-13-2010

@redhead65 THANK YOU for posting this much need to know info on 5FU. This is the drug that my husband had when he was being cured of rectal cancer. And he had A LOT of if - 28 days of radiation the coincided with 6 weeks of infusions 5 days on, 2 days off of 5FU. All of this gearing up for surgery to remove the cancer, which in turn left him with a colostomy.

After googling DPD deficiency and all of the symptoms noted, I am truly thanking God for staying withh my husband throughout his ordeal. I am thinking back about how he felt, problems that he had, every day he had a radiation treatment and all of nurses and doctor grilled him about how he was feeling, symptons he developed.

His lead oncologist BELIEVES in administering 5FU. Never once did he even mention DPD. Never let on about exactly what reflected in his white blood count although Dr G watched all of Bob's levels intently. I suppose I should be REALLY grateful for that and I AM however, little did we really know what could have happened.

I am blown away about this new information. I will also say that at this time, my husband need not know any of this. But I will say that I WILL NEVER forget this information. What I don't understand is why any oncologist who knows about DPD going into chemo treatments NEVER mentions this, more importantly does no preliminary testing for the DYPD gene prior to 5FU.

redhead65 · ‎05-16-2015

Dear Pink Dogwood,

I want to thank you for your response to my personal post. I found it sad, yet with an uplifting hope and it reflects a beautiful heart and mind that you have. It also speaks of your great love for your darling husband. I am so sorry he has had to endure all of that, and I am grateful he didn't have a negative reaction to the treatments.

Like everyone, it makes me ponder why doctor's , the AMA and the

FDA don't mention the black box warning, but I am assuming the percentage of problems is minute compared to the good this drug can do. Also, the medical field can't be an "alarmist" society as we all wouldn't hold up well. I suppose it is because they know what to do if a reaction occurs, and after the fact it can't be altered anyway. It is a sad situation for people like Lisa's husband, but allergic reactions can happen from any substance of this planet. Yet I do know and believe we all are fearfully and wonderfully made.

Yes, it is a good idea not to mention to a cancer patient after the fact, but it also is very good to be aware and know this for others if they have a problem or consider undergoing this treatment.

I have to put my stock in knowing that everything that happens to us is planned out ahead of time and happens for a reason we won't know until Eternity.

I pray your husband is healthy and remains that way. And thank you again for such a warm , sensitive and considerate reply.

I have just said a prayer for the welfare of both of you.

God bless.

PINKdogWOOD · ‎05-13-2010

@redhead65 Ms Red, I just read your note back to me, I must say, what a kind heart you have. THANK YOU for your prayer for my husband Bob and me. Just because a person is lucky enough to survive their cancer ordeal doesn't mean we don't need contined prayers for sure.

I know what we endured, I think of Gino and Lisa often and actually can imagine what they are still going through, at least to an extent. I saw shows Lisa did when she came back for a brief stint, always so bubbly, so sweet, cute, funny. And now to know she's gone again for good perhaps who knows. But I understand why now.

Thank you for asking about my Bob. He IS doing well, we're on the six month checkup schedule now with our lead oncologist. Do MRI scan and full blood panel to check everything. And everything's been good we're blessed to say. We're blessed to be able to manage his secondary conditions post cancer.

And I agree with all you said about the conditions of DPD and not panicing the public. Chances are we'd not be agreeing to the drugs if we knew this prior to treatments. ANd I hope you're right about addressing immediate concerns if/when all h*ll breaks lose during a treatment. God forbid.

So again, thank you.

redhead65 · ‎05-16-2015

@PINKdogWOOD wrote:
@redhead65 Ms Red, I just read your note back to me, I must say, what a kind heart you have. THANK YOU for your prayer for my husband Bob and me. Just because a person is lucky enough to survive their cancer ordeal doesn't mean we don't need contined prayers for sure.

I know what we endured, I think of Gino and Lisa often and actually can imagine what they are still going through, at least to an extent. I saw shows Lisa did when she came back for a brief stint, always so bubbly, so sweet, cute, funny. And now to know she's gone again for good perhaps who knows. But I understand why now.

Thank you for asking about my Bob. He IS doing well, we're on the six month checkup schedule now with our lead oncologist. Do MRI scan and full blood panel to check everything. And everything's been good we're blessed to say. We're blessed to be able to manage his secondary conditions post cancer.

And I agree with all you said about the conditions of DPD and not panicing the public. Chances are we'd not be agreeing to the drugs if we knew this prior to treatments. ANd I hope you're right about addressing immediate concerns if/when all h*ll breaks lose during a treatment. God forbid.

So again, thank you.

Dear Pink Dogwood,
Thank you for your kind words also. Just FYI, my man is a Bob also !!!
I am also a cancer survivor, two and a half years out from surgery, chemo and radiation and a year of constant treatments. I know of what you speak.

I will keep you and Bob in my prayers, and wish you a Happy Halloween and beautiful holidays to come.

Blessings,

PINKdogWOOD · ‎05-13-2010

@redhead65 And I will keep you and your Bob in my prayers. Thank God you too are a survivor. Your Bob obviously takes good care of you too. We're all kindred spirits I feel.

dex · ‎03-09-2010

I haven't heard any updates from Lisa on Gino for awhile which leads me to worry that things are not good.I hope that Gino is improving.I pray everyone suffering from Cancer will be healed and that one day we will never hear that word again.