New CA125 numbers UPDATE
Hello Ladies!!!!!
My lovely wife Michele is doing terrific with what she calls her "Cleansing Treatments", you know, the usual chemo drug mix. She's no longer a total newbie to all this stuff, as she just had her 8th out of 18 treatments. As I said before, her initial CA125 was over 2,000 and after surgery it fell to 424 if I remember right. A week after the 3rd treatment it fell to 179 and we got wind last Wednesday that a week after her 6th treatment her number was 112. I know, I know, you have all seen this before, and this is old hat, and newbies usually respond very well, and I bet most of you could have guessed her progress. But with all that, we are mostly elated that she's getting such good care and that her body is responding in a very positive way. In a nut shell, she's almost NEVER been sick at all with the chemo, I mean Cleansing Treatments. She didn't start losing her hair until like 4 or 5 weeks in, and it only partially fell out, but we decided to give her the buzz cut and she was excited to try her wig, which looks nearly spot on from her normal hair. She mostly goes without it and has only worn it twice the past 3 weeks or so. A really neat ballcap has been her choice, it's the designer kind. She did have a mild scare with her white blood count low so she had to wear a mask some and watch being around anyone. Now the past 3 weeks her hemoglobin has been declining and had it been any lower, they would not have given her treatment today. I think it was 9.5 and they want it 12 to 14. The won't give the treatment if it reaches 9, so Michele is afraid of that. She went for a two mile walk yesterday, and they told her not to do that anymore and to get more rest than she normally does. I don't know what she should do and what she shouldn't do. They told her to eat more protein. Do any of you have any suggestions, and how do you feel the assesment I have shown here? I'm always excited to learn from all of you and I appreciate hearing what you all have to say. I am sure it is hard to watch for some of you because you know the road map for a stage 3C or 4 patient, and how excited they get when they think they are beating this. And I also know that the road ahead might not always be peachy. I've read enough about all the wonderful women who brave this fight on this page, and I am a realist, but I don't for a single minute pretend to be the know it all, and don't ever want to display weakness in front of Michele. She's 46 and an incredible fighter. Michele was Ms. Kansas Drill Team winner & she used to be a cheerleader for the Kansas City Chiefs, and she's coached hundreds of young ladies to winning national championships. She's got what great women are made of, and knowing her, and reading this page, women are way tougher than men. When I am all alone like I am right now, I let a little tiny bit of negativity to creap in and I dred to ever see her fight slipping through her fingers. I know you women have seen it all on this page and have lost some very inspirational women and leaders on the page. I can tell you, that reading their stories and progress keeps their spirit alive in me and I plan on being a great care giver. I am sad there are not more care givers on this page learning from all of you like I am. Thanks for listening, I love you all......big john
Comments
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big john, first, what a lucky
big john, first, what a lucky woman your wife is to have a real man in her life! Wow.
"Eat more protein" - a couple things on that. First, see if there is a dietician who specializes in helping cancer patients available at your hospital or treatment center to talk to. My chemo nurse said "push the protein" but what the HECK does that mean??? The dietician told me to get 7 - 9 servings of protein every day. An ounce of cheese counted for one, an ounce of nuts counted for one. Basically, an ounce of meat equalled a one count. Since a typical steak or piece of chicken could be 3 ounces - you count 3. Other things that counted: yogurt, ice cream, protein bars or shakes. (The dietician and I talked about it and my particular type of cancer LIKED hormones - which is why it could never be used for treatment - and the body recognizes soy as a hormone, so I avoided soy protein isolates - HIGHLY processed soy). The new Premier Protein and Atkins shakes were whey based and I would drink those as well.
I hope that helps big john!
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hemoglobin
I'm kind of surprised they withhold treatment when it drops to 9. They didnt do that with me. I had 2 blood transfusions first round of chemo and 1 the second round to get the numbers up. I took iron supplements (constipating and I think max recommended daily dose is 45 mg), along with a multivitamin, and drank a Carnation Breakfast Essentials first thing every morning. Sometimes I drank Boost. I did exercises in my chair and standing by kitchen counter, walked laps in the back yard several times a day. It's all about trying to maintain a balance of activity, rest, and nutrition while you're taking the poison. I would recommend taking advantage of the resources at your hospital: dietitian, physical therapy, support group for emotional support. This ain't an easy journey. Thank God, and I do, we don't have to go it alone.
Anne
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bigjohnaz, it's a holiday
bigjohnaz, it's a holiday weekend so let's hope all the lovely ladies are off celebrating our nation's birthday!
It seems that doctors are pushing the neulasta shot these days. Please note that the shot has potential side effects, but it is given to help keep 'those numbers up' so treatments are delayed. I had 3 chemo, 25 external radiaiton/3 internal, and then 3 more chemo. My chemo nurse told me going in to all of this that if there were going to be problems with getting the treatment done on that schedule it would be on the back side - the last 3 chemo.
Her body is being treated with some pretty nasty chemicals and it is taking away her ability to fight off infection. I was told not working in the garden, only prewashed, bagged salads, or someone who could clean the vegetables for me. No mushrooms, period.
It is a journey, and since we are all different, there is no 'one size fits all'. I will say, if she is tired - give in to it and sleep. Sleep is healing and that is part of what is needed with this all.
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She's a lucky lady
to have you looking out for her! I think NoTime has some great suggestions as far as protein, and I would also suggest that you check to see if your treatment center has a dietitian on staff. They often do, sometimes at no or nominal cost. Especially if Michele is having no appetite side effects, there are lots of possibilities. I ate a lot of hummus with vegetables, thoroughly washed, and crackers, and soups with beans in them. Dried apricots, raisins, almonds. Yogurt, for sure. Greek yogurt has more protein per serving than regular. My current favorite Greek yogurt has 26g of protein in one 8 oz serving and I mix my own fruits and nuts into it. If she is not vegetarian, red meat, chicken and cold-water fish are loaded with protein and heme iron, which is the form most readily absorbed by our bodies. Nut butters are good. Watermelon and strawberries are two top fruits for iron. Spinach, sweet potatoes and other greens such as chard or kale are good, too. Adding red/yellow peppers and tomatoes, vitamin C rich, helps with the absorption of non-heme iron from fruits and vegetables, and I often squeeze a little lemon juice over sauteed greens for the same reason.
I also found an organic whey-based palatable protein shake that I drank in between meals.
And yes, if she is tired, it's good to rest. I forced myself to have an afternoon nap some days, even if I felt pretty good, figuring my body could use the down time.
Hoping that her side effects continue to be minimal!
Chris
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Protein and blood counts
Hi big john,
I'm sorry this is so hard and scary. Everything seems so tenuous when you're in the thick of it.
When I was in treatment, I was very deficient in protein, according to my bloodwork. It lead to some critical issues. I did not use the commercial protein drinks because they contain a lot of toxic ingredients and things that are not good for the body, like high fructose corn syrup. I would never use Boost or Ensure, the drinks that doctors tend to recommend. They contain awful ingredients.
http://community.healthywomen.org/profiles/blogs/ensure-and-boost-may-be-harmful-to-cancer-patients
I made my own smoothies with whole fat, organic coconut milk (it comes in a can and Natural Value is the best brand, but Thai Kitchen and Native Forest are more readily available) and whey protein powder (the best brand is Vital Whey). The Vital Whey comes in a variety of flavors, but you can add to the taste with organic berries or other ingredients. It is easy to hide things in a smoothie that will help support her in other ways. Adding gelatin powder (Great Lakes is the best brand) will help heal her gut, which is damaged by the chemo.
I bought a diet book when I was tracking my protein intake, that listed the amounts of protein, carbs and fat in each food. But now there are a number of online programs in which you can enter various foods and can track her protein intake each day. You can find one here https://cronometer.com/ My gyn/onc wanted me to eat about 70 grams of protein each day.
If her hemaglobin drops too low, they will give her a transfusion. But that can impact her protein level and make it drop even more. I disagree with the advice to supplement with iron. Iron can support the growth of new blood vessels (angiogenesis) which can create a blood supply to feed tumors. I was anemic before my diagnosis. My doctor put me on an iron supplement and when we retested a few months later, my iron level was high. A couple of months later, I was diagnosed with ovarian cancer.
The book "The Cancer Fighting Kitchen Cookbook" is a great reference. It supplies healthy recipes for cancer patients, tells you how you can adjust the flavorings if her taste buds are off, and lists various recipes you can use to help support things like white blood cells.
I wish you both the best.
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New numbers came in today
Here is the history of Michele's numbers (CA125). Over 2,000 upon dianosis, 464 post-op, 179 after 3rd chemo treatment, then 112 after 6th treatment, and go the new numbers today which is 42 after her 9th treatment out of 18. It seems to me that these numbers are model numbers and that the chemo drugs and Michele's body are reacting in a very very positive way. The only big symptom has been the hair loss, some mild fatigue, and a few sores in her mouth early on, which have totally gone away for weeks now. I just don't see how one could respond any better than she is, but I'll leave that for you veterans to help me understand.
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CA125 numbers going down is
CA125 numbers going down is always good news! That is wonderful news and I wish her continued success in treatment. She is lucky to have such a loving and caring husband.
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John~Sent you an answer here re proteinbigjohnaz said:Hoped for more response
Thank you so much NoTimeForCancer. I loved your response and appreciate you taking the time to answer. I really thought there would be more opinions on the matter. Maybe there is just not many on this page anymore????
Hello John - Sent you some info and an answer at this link. Lots of protein info. Kudos to you and Michele for getting along so well. That's what we all wish for when we go through those grueling chemo treatments.
Loretta
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Hello everyone, It's been a
Hello everyone, It's been a long time. I am a caregiver and have enjoyed my journey being beside my wife during this battle. For now everything is going terrific. My wife Michele has been in remission for 14 months after being diagnosed on April Fools eve in 2016. Michele's CA-125 has been bouncing around 11 to 13 for over a year now, so she calls her norm "12" since that is her birthday in April. She was tested every single month through October 2017 and has asked to go every 3 months for now and not seeing her oncologist but every 3 months also. The biggest delima was to get her port removed or leave it in. Michele and her doctor thought to leave it in since it's difficult for them to draw blood and since it's Michele's least favorite thing to do, it's staying in, at least for now. The long term effects stage 4 OC has had on Michele, besides the obvious, is that she was used to being an athlete, as a dance performer, a cheerleader for the KC Chiefs, a cheer coach, to running the state of Arizona's cheer program for all high schools, the change is that the steroids have wrecked her pysical appearance (according to Michele) and hasn't lost the weight she gained. We realize it's a small price to pay and being able to eat is sure better than not being able to eat and being ill. So Michele is just living with it, and she talks about getting back into shape again, not sure if that is good or bad. The other major change is that Michele is very very active in the OC chapter her in Arizona and donates a lot of time to the organization. So much that the chapter gave her a very nice award at their banquet recently. Michele is young and active and a role model to those OC patients who need a smile and encouragement. Michele has met so many freiends suring this journey. I'm very proud of her and like I said, I've enjoyed being by her side. Michele and I realize we are both mortals and have learned to enjoy each day. We do many things we never dreamed of taking the time to go do, like our weekly feeding the ducks in the city lake. We never stopped long enought to enjoy life fully and this bump in the road has gotten us to stop and smell the flowers, breath the fresh air, and keep putting one foot in front of the other. My favorite movie is "It's a Wonderful Life" and we enjoy it more today than ever before. I still sleep with one eye open, but what's important is that Michele feels like she's cured, and her attitude to all of this has never waivered. My wish is that all you wonderful ladies can keep pushing forward, there will be a cure, we just gotta believe......big john
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Happy with your Updatebigjohnaz said:Hello everyone, It's been a
Hello everyone, It's been a long time. I am a caregiver and have enjoyed my journey being beside my wife during this battle. For now everything is going terrific. My wife Michele has been in remission for 14 months after being diagnosed on April Fools eve in 2016. Michele's CA-125 has been bouncing around 11 to 13 for over a year now, so she calls her norm "12" since that is her birthday in April. She was tested every single month through October 2017 and has asked to go every 3 months for now and not seeing her oncologist but every 3 months also. The biggest delima was to get her port removed or leave it in. Michele and her doctor thought to leave it in since it's difficult for them to draw blood and since it's Michele's least favorite thing to do, it's staying in, at least for now. The long term effects stage 4 OC has had on Michele, besides the obvious, is that she was used to being an athlete, as a dance performer, a cheerleader for the KC Chiefs, a cheer coach, to running the state of Arizona's cheer program for all high schools, the change is that the steroids have wrecked her pysical appearance (according to Michele) and hasn't lost the weight she gained. We realize it's a small price to pay and being able to eat is sure better than not being able to eat and being ill. So Michele is just living with it, and she talks about getting back into shape again, not sure if that is good or bad. The other major change is that Michele is very very active in the OC chapter her in Arizona and donates a lot of time to the organization. So much that the chapter gave her a very nice award at their banquet recently. Michele is young and active and a role model to those OC patients who need a smile and encouragement. Michele has met so many freiends suring this journey. I'm very proud of her and like I said, I've enjoyed being by her side. Michele and I realize we are both mortals and have learned to enjoy each day. We do many things we never dreamed of taking the time to go do, like our weekly feeding the ducks in the city lake. We never stopped long enought to enjoy life fully and this bump in the road has gotten us to stop and smell the flowers, breath the fresh air, and keep putting one foot in front of the other. My favorite movie is "It's a Wonderful Life" and we enjoy it more today than ever before. I still sleep with one eye open, but what's important is that Michele feels like she's cured, and her attitude to all of this has never waivered. My wish is that all you wonderful ladies can keep pushing forward, there will be a cure, we just gotta believe......big john
Hi Big John,
I am normally active in the Uterine Cancer board, but I'm happy I wandered to the OC board and read your thread. I love your attitude and optimism and think Michele is a very lucky woman. I'm happy to hear that everything has been going well with your wife and that she is still very active and in remission. Best wishes to her longevity and good health! Thanks for the update!
Wishing you both the best!
Rebecca0 -
Michele is one lucky woman
to have you as her partner. She seems to be doing quite well and is living her life as well as she can. Like Michele, I have been athletic all my life and despite the effects of Taxol and Carboplatin chemotherapy, I continued to swim long distance at least several times a week throughout treatment. Other than back pain and neuropathy in my feet caused by the chemo, I basically breezed through the treatment. I still swim regularly and am beginning to feel fit and healthier. My treatment ended almost 4 years ago. Keep up the positive outlook and continue to appreciate every moment. Cancer, in my case stage 3 uterine papillary serous carcinoma, taught me to live fully now and enjoy each moment.
Warm Wishes to you and Michele,
Cathy
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