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Dec 2, 2012 11:08pm Bon_ wrote:
Hi MN Harleys Mom, glad you found us. I always said that about this site is it's the best support group because it's open 24 hours and can attend wearing pajamas.
Terri is awsome and she has been through a unique treatment for IBC, she's the only one I know that didn't have radiation and had chemo for as long as she did with getting a complete response from chemo...I'm very intrigued with Terri's onc/team approach and think they are on to something with this approach, but as she said, different treatments for specific diagnosis. I'll share mine and also lists some tips, since we are posting on pin up and these tips may help many others for years to come and hope others will add on.
My chemo was 4AC & 4Taxotere, then surgery about 10 days after last chemo (chose bi-lateral mastectomy with no reconstruction), then radiation started about 5 weeks after surgery. Since I was not post-menopause and was ER+, chose to have ovaries removed same surgery as bi-lat mx, so started Femara one week after surgeries. Started Zometa infusions 3 mos after radiation and continued for 3 years and because my scans are clear, onc stopped it.
Emend is drug given for 3 days before chemo to help with nausea that the chemo will cause. Zofran is also for nausea and given during chemo infusion in your IV and also prescription for home to take as needed. The dexamethosone steroid is what keeps us awake and swells us up. I used my roid-time to get things done before crashing ha.
Taxol (Paclitaxel) & Taxotere (Docetaxel) are both Taxanes and come from the same tree, Yew.
Taxol & Taxotere can cause loss of finger & toe nails and to prevent this...1) trim all nails down; 2) put olive oil on cuticles and nails to keep moisture and avoid dry splitting; 3) bring ice cubes inside a ziploc/double to Taxol/Taxotere infusions and ask nurses to put it in the freezer, bring a bowl large enough to fit both hands finger tips in then just before the nurse hangs your bag of Taxol/Taxotere have her bring you the ice, then you put some in bowl for fingertips and keep rest in ziploc for toenails; after infusion is finished dump ice.
During Taxol/Taxotere, over-the-counter Claritin will help with the deep bone pain, but of course check with your onc first.
During Taxol/Taxotere, everything will taste like cardboard. I found that eating ice cream or pudding was good and no drinks tasted good except cold water.
Chemo causes constipation bad, pain meds do too. Ask onc if it's ok to take Fiber Capsules and Colace (1ea per day), both over-counter. During my AC I had bleeding and onc sent me to GI doc and he did my first colonoscopy and found a colon pre-cancer polyp, so he told me to take Fibercon & Colace every day for the rest of my life..I've found fiber capsules (dissolvable) are better than the hard Fibercon pill....no it does not give me the runs just keeps me regular..and my onc agreed with GI and told me that the majority of our immune system is in our colons and a healthy colon is necessary. GI told me that Senokat and others like it are only for temporary relief and not to be taken everyday.
If having headaches while being bald, any air that hits your head can cause them, try wearing a nightcap (yes like a baby) to sleep in...sold at Amercian Cancer Society TLC website: http://www.tlcdirect.org/
The worst part about mastectomy surgery is the drains, just because it's something foreign in the body and in the way/annoying, they have to be stripped like milking a cow couple times a day and there's really only one sleeping position while they are in. Had 4, 2 on each side, and one side of mine were out in a week and the other side in another week, so by end of 2 weeks they were all out, but some women have them in longer.
From day one of mastectomy, do the exercises to get your range of motion back...best one is walking the wall with your fingers. It is a requirement to be able to raise arms over head and lay like that comfortably for half an hour before starting radiation, so do the exercises from day one and several times a day, no skipping it.
After mastectomy and axilla nodes are removed, nerves will have been cut so there's lot of numbness but also when the cold air hits arm or chest it will cause an achy pain....this took me a few months to realize what was happening and when it dawned on me, started covering my arm with blanket and made a sleeve out of tube sock (cut out bottom) for sleeping and that's all I needed, sometimes it will happen in the car if the air conditioner is blowing on me, so just turn the vent away from me.
Fans, fans, and more fans. Hotflashes whether from chemo, Femara, or whatever, having a fan with you at all times will save you a lot of misery. For a great battery powered fan that will fit in your purse that is quiet and efficient, I highly recommend the O2 Cool 5-inch which you can buy at Amazon.com and it holds 2-D batteries which last long time, fresh batteries fan blows cold. Also recommend keeping a tower fan next to side of bed blowing at face, it will not only help to keep you asleep but help prevent nausea. Other places, one on counter in bathroom for when doing hair/makeup, one that can blow on your while doing dishes/cooking, one by where you sit to watch TV. The personal battery one in your purse whip it out in a restaurant it sits right on the table, at the movies, while shopping, during doctor visits, everywhere. I like to take this opportunity to thank all of my fans, ha! (I had a thread about this a few years ago under previous member name and we all got a kick out of it.)
Anything put on our skin is absorbed into our bloodstream. We have IBC which is in our skin, so we are more sensitive. My radiation onc told me to only use Dove "White" soap, it says 'white' on the box, because it is the only that washes clean. She told me to get rid of everything that I have with "paraben" in it...which was just about every beauty product I owned. Jane Iredale is a line of cosmetics with no chemicals. Burt's Bees is a line for lotions, lip balm, etc. California Baby (sold at Target & others) has chemical free shampoo and other products too. I also only use green works cleaning products in our home, unlike before cancer when I used clorox and every chemical there was.
Radiation is a cake-walk compared to chemo. If have rads, Emu Oil is awesome for radiation, it has been used in Australia for burns for many years. My onc was amazed that with my light skin that I didn't burn badly. Emu Oil is sold at Vitamin Shoppe or online for about $20. We are empty nesters, so I walked around my house topless to help get air to my skin which helped too. Do not wear your bra during radiation because it will rub off / sluff off the skin and that's some of the problem with people getting bad skin during rads (I did not have rub/sluff off), I wore maternity tops during entire rads weeks and for a month after (Rads continue to work on your skin for a month or so after, so continue). If Aloe Vera is going to be used, make sure it is 100% no additives, I didn't use it.
If having anxiety and/or not able to sleep, ask onc for meds to help. Anti-anxiety meds are so helpful and have made a world of difference for many of us. Sleep is very important to heal and feel good, Ambien has helped me fall and stay asleep, that's the key staying asleep, interrupted sleep is like never having gone to sleep at all. Before IBC, I rarely took an aspirin and didn't like taking prescription meds, now that I've learned that chemo changed my chemical balance and that I need these meds, it's must better quality of life.
Don't let the stats about IBC get you down, we are all different and none of know when our time is up. Being prepared for the worst and hoping for the best is a good thing no matter what kind of breast cancer we have. Check out the Stage IV Forum thread "A place to talk death and dying issues" - it's not a morbid as it might sound and there is great and invaluable information there, and when prepared for the worst, it will give you a peace like no other, that will help you enjoy all the years you will live and your family will appreciate it after you're gone. http://community.breastcancer.org/forum/8/topic/770023
Best to everyone and hope these tips help! ~Bonnie
Dx 3/17/2008, IBC, 6cm+, Stage IV, Grade 3, 4/18 nodes, mets, ER+/PR+, HER2-