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CONFUSED ABOUT STAGE IV REMISSION. ANY HELP?

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Man oh man...this is such a roller coaster! I can't believe all the extremes this cancer is putting me through! I was told I am in remission a couple weeks ago, but lately I keep wondering what does that really mean? What can I expect? Is there any way to know how long so-called "remission" will last? What happens when it comes back? Is treatment worse? Is there any hope that it won't ever come back? I would appreciate any answers because right now I am in great need. Am making an appointment with an oncology psychiatrist, but I'd rather hear from real people. THANK YOU!

12 replies

The hardest part for us after treatment is getting used to the "New Normal" they talk about. Life after cancer treatment is truly different. There is anxiety when test time is near and what ifs. We wonder if we are becoming hypochondriacs and all sorts of things. This is normal and gets better with time. Be strong and live life day by day. I'm glad you are going to see someone to help cope because it is a tough journey. Just know it gets better. Prayers are with you as you go down this new path of life.
Blessings,
Joy

A complete remission is defined as complete disappearance of all such manifestations of disease. The goal of oncologists is to strive for a complete remission that lasts a long time - a durable complete remission (CR).

A partial remission is defined as 50% or more reduction in the measurable parameters of tumor growth such as an abnormal finding on physical examination, radiologic study, or biomarker from a blood or urine test.

Unfortuanately, the vast majority of remissions that are achieved are partial remissions. Too often, these are measured in weeks to months and not in years. Some types of cancer do not show any meaningful reponse to chemotherapy.

And yes, there are those that have lasting durable remissions. Highly selected patients whose tumors are "responsive" to chemotherapy can have long-term remissions.

I have had two remissions already. I have NHL-stage 4. I had two years between the first and second onset. Since I have indolent NHL, it will definitely come back. My remissions have been two years apart. My only advice to you is to hope for the best, enjoy life, and when it comes back, if it comes back, fight hard and know that life between remissions needs to be enjoyed. A positive outlook is vital. GOOD LUCK.

Howard

Thank you, Joy ... what a great attitude!

Thank you gpawl... your posts are so knowledgeable and informative -- we (I) need those, so thank you much for continuing to share.

Thanks, Howard ... what a trooper you are. Best wishes on your continuing journey...

I have stage 3B lung cancer. Diagnosed Dec 2007. Treated with aggressive chemo and radiation Feb 2008 - June 2008. In July I was told I was cancer free. it returned in December 2008. From what I understand, the cancer can just get too small for them to see and it doubles in size every 4 months. I am looking into natural remedies now. Vegetable based diet, exercise, fresh air and sunshine, etc. I quit the chemo last Wednesday because I couldn't stand being sick anymore.
I will keep you in my prayers.
Mary

I was diagnosed with stage IV Non-small cell lung cancer March 2008. I have been treated w/ carboplatin and Alimta, after 6 months I had to stop the carboplatin and have just been on the Alimata(every 3 weeks). Now my Dr. wants to add Avastin. I am concerned about the chance of bleeding on the brain as a side affect. I had a small tumor on my head, but I had that removed via stereo tactic radiation May of 2008, it is gone and been over a year. My Dr reassures me I will be fine(he is at Sloan-Kettering), but still worry. Any experience or advice on Avastin. Thank you and God Bless!

Right on Joy, I have been told that by my primary care doctor, whom I see every other month and run the CEA tumour marker, that am I am hydochrodriac, I laugh and say "WHEN WAS YOUR CANCER BUDDY" which if I am correct will show cancer coming back, mine has always been the same and I am so thankful, I check my Hemoglobin, every other month because that shows anemia, I do not care what anyone says about being on the defense, I am my own caretaker and I care for most for me. almost 2 years cancer free and counting

Have a wonderful day!
Linda

So glad your in remission That is great. What was your chemo. My husband was on carbo/taxol/avastan he had 6 rounds every 3 weeks. Had a ct scan after 3rd round showed no improvement but no growth. We do another ct scan next week say a big prayer for us he is not doing well & I hope it is just because of the chem still in his system.

Thank you for your replies. It's interesting to have your memory jogged back to another time that seems remote in this "New Normal" world, but is really only a matter of two short months since I posted this.

I am happy to report -- no, pretty ecstatic -- that I continued with a couple more chemo treatments (Carbo /Taxol /Avastin) after the above, and then had another PT/CT scan on June 25. I am in COMPLETE REMISSION with no signs of active cancer. I count myself among the luckiest people in the world, cannot really grasp the hows and whys of ways I have been blessed.

I know the journey is not really over until it's over, but the past year has been the most stressful, life-altering period I never dreamed of experiencing. It has changed me down to the very depths of my soul.

My best advice (as if!) is to have as many prayers said for you by as many people as you possibly can, and to keep fighting those negative thoughts of doom that haunt you from the first moment of diagnosis. If I can be blessed by such a miracle, ANYBODY can, so start looking and praying for yours.

BEST WISHES! XOXOXOXOXOXOXOXOXOXOXOX

I am so happy to hear that you are in complete remission. After chemotherapy for non hodgkins lymphoma and subsequent cat and petscans, I am told I am in complete remission. I asked my doctor what that meant. All he said was it means you are Normal with no signs of cancer. He said if you stay in complete remission for two years, you are over the hump and that the chances of the cancer returning are much smaller, almost next to none.

God bless you.

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