Calling all TNs
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Welcome Rascalsmom! Interesting to me to read your side effects, - I, too, have had that weird cigarette smell!! I still do, although not as much as I once did. I don't think I heard anyone else mention that! Wishing you good health!!
LoveMyVizla, - Wonderful that there is good news on the horizon, - I hope they HURRY UP!!
BE WELL wishes, and hugs, to all here!
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Wow LoveMyVizla, what a great link. Looks like wonderful news for TNBC patients like my wife. They might have really discovered terribly important.
Update: My wife's ER/PR+ turned TNBC while taking Xeloda. She got 16 months out of it and won't miss the H&F SE's. She's been on Halaven since, which has its own debilitating SE's. She's got numerous spinal mets, however, after her second infusion of Halaven the pain stopped. Also, her usually high calcium of 10.5+ suddenly dropped to 9.5 & 9.7.
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Mike - so happy to hear Halaven is working for your wife!
Thanks for the link Vizla
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Congrats!! I popped on and I am so grateful that you are cancer free!
May God continue to keep you healthy, happy and safe!💕
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Hi LoveMyViszla!
I've already switched MOs once, my previous MO was worse, he was outwardly hostile and incredible condescending, he made me feel so small. The one I have now is better, but only marginally. I dread all appointments with her, but I had to make a lot of fuss to switch doctors in the first place, they were determined to force me to keep seeing the previous one, so I highly doubt they'll be amenable to another switch. I feel like the MOs at this centre prefer patients with no mind or voice of their own, they don't like being questioned.
For my pre-chemo checkups, I was seeing a really great MO, but she couldn't keep seeing me because she was finishing her locum and moving elsewhere for another position, I still miss her.
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AnxietyGirl,
Maybe a good idea is to find a Integrative Medicine MD or Naturopathic MD who can be part of your team? That is what I did. Oncologists seem to know a lot about chemo but not that much about complimentary things.
After my consult, I brought HIS list of recommendations to my MO and said, "I had a consult w an integrative medicine cancer doctor to see what I could do to fortify my system, and this is what was recommended to me; do you have a problem w any of this?" Some doctors can "listen" better to another doctor... Mine did. :-) He was fine with all of it -- though he said no aspirin/fish oil till my port placement had healed due to blood thinning properties of those two.
I am now doing baby aspirin every other day and Metformin 2 x 500 (approved/prescribed by MO). Also I take Melatonin at night. All three have anti cancer properties and all correlate with better survival outcomes.
Re nutritional IVs, my MO was not enthusiastic, but I decided to listen to my gut and do them. I told my MO that I was going to, because I want to be very honest with him. (If there is a major reason NOT to do something, I also want to know about it.) The reasons he came up with on the negative side had to do with infection, needle sticks, etc. And the possibility of a negative reaction that would then be hard to correctly attribute between chemo and IV. But he did not have a major objection. So I did it.
The IVs made my side effects about 50% less in round 2 than round one.
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Hi all, I'm new to this forum and hope it's okay if I'm a borderline member. My initial path results were ER+, PR-, HER2-, and then my oncotype came back with a score of 38 and showing triple negative. My oncologist said that's because my cancer is so weakly estrogen driven that on a molecular level it's ER-. Which makes the oncotype invalid for me. So even though I'll eventually be on tamoxifan just in case it helps, right now I'm in chemo in spite of no node involvement and clean margins after my mastectomy. So a nasty techinically ER+ positive but really TN cancer.Yay. I've had my first round of TC a week ago.
@AnxietyGirl - I am sorry you have an unkind oncologist. My initial MO was an ass and so demeaning and dismissive. When I told him about my serious needle phobias and asked for a port, he said no. Just no. Fortunately, when I asked my breast surgeon for a second opinion referral, she sent me to a very kind MO who I trust and am happy to be working with. And he immediately okayed the port placement. If you have anyone on your team you trust (like I did my breast surgeon), ask to be referred to someone kind and who listens to patients. Sometimes if you don't specify that, the just go with who has a better reputation. This is all hard enough without having to work with someone who treats you poorly and ultimately, the MO is the person you'll be working with the longest.
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I’m done! Treatment is over!
Excited yet feeling a little lost...0 -
Congratulations! I'm at the beginning of my journey, and I am happy to cheer for you and think of reaching the end of my treatment too.
Bravo!
Santa Barbarian
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cccmc2 - congrats!! Feeling lost is the norm I think. After treatment ended it took me months to get it together mentally- it was like going back to the emotions right at diagnosis.
I’m 9 months out from chemo, over 6 from radiation, and I feel pretty darn good most days.
Best wishes to you!
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thank you !
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congratulations cccmc2!
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ccmc2 - congrats!
I'm done too. I finished rads yesterday. Feels a bit odd to suddenly have nothing 'medical' to do. I'm prescribing myself lots of exercise. Was it this thread that someone posted about making her body inhospitable to cancer? That phrase resonates.0 -
moth - exercise is a great plan. I find I feel much better the more active I am, both physically and mentally.
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Since we are triple negative, do any of you know of specific vitamin and/or mineral supplements we should avoid after we've completed chemo and/or rads?
My onc isn't specific as she as a doc just thinks supplements are a waste of money.
I've taken supplements throughout my adult life.
Just looking for experience of other TNs.
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Congratulations cccmc2!!! It takes a while, but soon you'll be filling your days with "normal" thoughts and tasks. 😊
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RascalsMom,
There is a center in Chicago called The Block Center -- an integrative cancer treatment center. I had a consult with them. Dr Keith Block. He also has a book that you could get, for a lot of this info. You can probably get similar advice from a good experienced integrative medicine MD or Naturopathic MD in your town. The Moss Report has a lot of this info in it as well. You want to find someone who is looking at your entire system, all your nutrition, your lifestyle habits, and and your unique needs. Many places do a bunch of blood tests to determine these things.
In lots of ways, cancer can be seen as a metabolic disease... Many adults are diabetic or pre-diabetic in our modern fast food culture. What's normal for us physiologically is hunter-gatherer food, not processed supermarket shelf-stable food. Foods that are in their whole state. My glucose was on the high side of normal when I was iagnosed and I considered myself a very sugar conscious eater. And, our standards of normal may be quite high. Both my parents developed diabetes as older adults. I figure I am definitely on the metabolic disease spectrum.
Many things have been found to discourage the growth of cancer via statistics of recurrence. Exercise of about 30 mins per day - or 3 hours/week - of brisk-paced walking definitely improves survival and diminishes recurrance. (Even during chemo it helps the tumor's response). Intermittent fasting or fasting-mimicking - see USC's Dr Valter Longo's info online - stresses cancer cells and boosts immune function. High vitamin D status helps - you want to be up near 80 which is much higher than the cutoff of 30 for 'normal'. Low blood sugar/ low inflammation diet: no white sugar, white flour, white rice, or other refined carbs. No transfats or deep fat fried/ charred foods. No alcohol. Yes to fermented foods like Kimchi. Ketosis is a benefit, as cancer cells can't use ketones for fuel but normal cells can, but huge amounts of the wrong meat and fat seems to be a bad idea. Keep protein lowish and primarily from fish/ nuts. Max out your fresh veggies.
Going at least 13 hours between dinner and breakfast (no night snacking) is a benefit to blood sugar. Keep most of your diet focused on cancer-preventing foods, like an array of colorful vegetables. I was told to limit egg yolks but whites ok. I was told to keep my fruits low glycemic (berries, kiwi, watermelon) and to have small amounts-- treating fruits, sweet potatoes, carrots and other healthy-but-sugar-laden foods as treats and stay under ~1/2 C of these per day, combined. There are food based supplements, which can give you revasterol etc without the sugar. Stay away from dairy due to inflammatory properties (though organic whey protein isolate powder is ok as a supplement).
Basically, you fill up on above-ground veggies, deep sea fish, and healthy fats like nuts (almond, macadamia, pecan, walnut) and avocado... Healthy complete carbs, like lentil and quinoa are ok, also small amounts, keeping an eye on total carbs.
Sleep/sleep hygiene is very important. Deep breathing (consciously really filling you lungs deeply) min100 breaths per day. Melatonin is a benefit, and regular bedtime in totally dark room is a benefit. Metformin is a benefit. Baby aspirin. All of these chip away at recurrence.
I am taking a host of natural superfood supplements (curcumin, reishi mushroom, super green powder) during my chemo, and doing fasting-mimicking before the chemos to stress my cancer cells. I am also doing vitamin IVs for nutritional support. Last heat is a very good stressor to cancer cells. I am doing infrared saunas which heat your tissue.
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Santabarbarian,
What great info! I'm going to clip and paste to my docs so I can reference it when needed. Thanks for such a comprehensive post!
Vickki
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Rascal Mom: The dietician at Northside Hospital here in Atlanta put me on Glutasolve powder, twice a day. You can sometimes get it here more cheaply than Amazon. Apparently we TNBC folks need it both during chemo and for general support. I'd also take a good probiotic. I have GERD badly, so the dietician has me taking this powerful, and expensive, powder 1 or 2 times a day. Without VSL#3, I lose my voice by the end of the day. And singing in a community chorus is something I missed during the worst of chemo and have returned to.
Good luck!
Paula
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Thank you so much. I'll look into the books.
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congrats to Cccmc2 & Moth!! Hope you both a well deserved celebration!
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Moth
So sorry I missed your post saying you finished as well. Congratulations!
Vickki
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Congrats to Cccmc2 & Moth!! Now you will have time for fun things instead of dr appts!
As for supplements, my onc suggested vit D.
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moth : congratulations! that's awesome!
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My MO recommends Vit. D also. About the deep breathing...my PT recommends it, as it helps pump the lymph fluid around.
Congrats to finishing treatment!
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I’m about 3 weeks post chemo and obsessing a bit. I have this weird kind of muscle fatigue in my buttocks and back of thighs. My onc said it can take 6 weeks or so to not feel any risidual effects from chemo. But this hasme worried. I can’t seem to shut my brain off. Anyone else experience this ?
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cccmc2 - when I finished chemo it was actually worse than going through chemo for me. It took about 12 weeks for me to not have really worrisome muscle pains. I am a very fit person, so it wasn’t like I had health issues that should make my recovery more difficult.
I didn’t have your exact issue, but I had severe back and shoulder pain - I had a complete breakdown in the onc’s office I was so fearful it was mets. I felt so horrible and was really questioning my decisions.
I know it is hard, but it can take time. For myself, I found that stress exasperated everything exercise made me feel better.
Hugs.
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thank you VL22.
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cccmc2,
It actually took me some time for all the aches and pains to recede. During treatment, I was very lethargic so I didn’t move around much. After I finished neoadjuvant chemo, I felt a lot of aches as I became more active. I pushed thru with exercise and starting life again and it’s much better. Of course, you’ve always got to follow your gut. I hope things proceed smoothly for you!
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thank you! I actually found a thread titled “muscle fatigue after chemo” lol. So I’m feeling a little better about it . It seems to affect many. Whew...
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