Stage 2 Sisters Club
Comments
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I did every three months for the first year. Twice a year for the next four, and at year 5 graduated to once a year checkups with the oncologist. That actually made me kind of nervous;, so I space annual physicals with my GP for 6 months later, so that somebody is checking me out twice a year.
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I am also seen by BS (annually) and PS (will eventually be annually once I get the last of the recon straightened out) so I can stagger those appointments so I am being looked at by someone quarterly. Also, because I have had so much skin cancer I am being looked at every six months by the derm - who is very thorough. I have three new lumpectomies on my back to prove it - seriously, they were the equivalent to stage 1 lumpectomies with very wide margins! Crazy!
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Have a great weekend everyone!0 -
I don't understand why here in our country is every year. In Switzerland is every six months once you reach age 40. I will ask here to do it every six months too. I would make me nervous just to have to wait to see if I have something more.0 -
Headeast, I get them every 6 months, although I don't think forever.0 -
Thanks everyone for sharing your protocols. Based on your responses, I made appt to have my first done next week. I hope/imagine the labs mentioned by SpecialK (CEA, CA 27/29, CMP, CBC, Vit D) is standard care?
My faith in imagining techniques is not what it used to be: I had 4 yearly mammograms that missed my multifocal cancer. I had a MRI-guided biopsy that missed 12.2 cm (not mm, yes cm) of cancer, and a PET scan that showed all was "normal" a few days before my DMX. My body hides things well. Wish it hid my wrinkles as well lol. So I am going to rely on blood work more this time, although I do not know how accurate those readings are.
Joe - Nice update on M.A. Keep thinking Vegas!
SpecialK - Noticed you were on Arimidex and now on Femara...why the change?
Ruth - My joints are hurting today, I'm not in the mood to power walk. Can I eat chocolate instead?
Can't remember who else I meant to respond to. Anyone with SEs or going through chemo that needs a hug for the weekend?
I'm thinking about having friends over for a "soup night" tomorrow. I open to your recipes if you've got good ones! Thinking 4 soups and great artisan breads
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nisa - don't count on the labs - not all oncs do them, and all oncs definitely don't do the tumor markers - some feel they are unreliable. As far as the other blood tests you can ask your onc to do them or your primary care - they are standard labs for a regular physical, except maybe the Vit D, but it should be! I started on Femara and was on it for 6 months. I developed a trigger thumb on my dominant hand, so my onc casually suggested a switch to Arimidex (he had started me on Femara because he feels it has the best performance) to see if it improved, so I switched and the trigger resolved. I had the same amount of joint pain on both drugs until the one year point. I developed a trigger on my left wedding ring finger, one on a toe, and a severe one in my left ankle. I also developed knee pain that required a cortisone injection. I figured I might as well go back to the drug my onc favors - so I switched back. I am using a different manufacturer, and so far so good. I still have joint pain but I expect that.
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Specialk - I have been reading about vitamin D and I believe based on what I have read that it boosts the immune system and has anti cancer properties. I take 1000 mg of D3 daily. My MO does not believe D3 hurts, but doesn't believe it helps either. The MO I saw for my 2nd opinion at Sloan Kettering felt the same way. I know some MOs check vitamin d levels in their patients. I am interested InHow much D3 can be taken safely as I do believe it helps with immunity. Do you take it?0 -
Assuming you are otherwise normal in diet etc., you can easily take 2000 iu of D3 daily. I heard MO from Sloan speak and say that recently.
Also, another one of my excellent non-cancer doctors told me that, even suggested I might take 3,000 but i haven't gone there yet.0 -
smrlvr - yes, I do take D3 - my Vit D level was exceedingly low when I was diagnosed - partly because I have had a lot of skin cancer and I don't go out in the sun - which is the natural way for the body to make vitamin D. I supplement with about 4,000iu daily - my onc believes in supplementation, and my level has come up with it. I am also required to take it with calcium because I also receive Prolia injections eery 6 months to combat bone loss.
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Here is an old post I did on vitamins after I heard a talk about vitamins. The woman who gave the talk is a doctor, nutrition specialist, and an eleven year breast cancer survivor. Here are some of her tips for staying healthy:
1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that.
2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:
* older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer
* taking acid-blocking medications make you less able to absorb B-12
* she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)
* B 6 is important in lowering the risk of breast and colon cancer
* she recommends 90 mg of vitamin C
* 30 iu of E
3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.
4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.
* adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy
* Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors
* start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels
5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added. Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.
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Ruth, thank you for that,0 -
Ruth,
I would add that if one wishes to build bone then calcium and magnesium should perhaps be added to the list.
I don't go in the sun much because I'm prone to skin cancer. Even my gardens are shade gardens. So, for me, I need supplemental D3, Ca, and Mg. I take the following amounts twice a day: 600mg calcium, 200mg of magnesium and 2000 IU of D3.
Since I had replaced bone that I lost due to Arimidex, I reduced the amount I was taking of these three vitamins. The next bone density scan showed that I had lost half of what I had gained. Now I am back to these amounts and I don't skip taking my vitamins.
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Hi, right before I was diagnosed with my BC, I had a physical and my Vit D was very low. I live in New England and stay out of the sun usually because I am fair-skinned and have had some issues with pre-cancerous skin spots. Daily yogurt eating wasn't taking care of my Vitamin D needs.
My doc recommended I take 4,000 to 5,000 I.U.'s of D3 for three months to get my levels up and then take 2000 per day routinely.
With the B12, there are two kinds...look at the ingredient list on the bottle and try to take methylcobalamin instead of cyanocobalamin. Your body will absorb the methyl, whereas the cyano just passes through. Here's a link to one account...http://www.naturalnews.com/032766_cyanocobalamin_vitamin_B-12.html
I hope everyone is having a good weekend!0 -
Hi all! Just wondering if anyone is into yoga? I just recently started and found an awesome dvd Thriving Yoga for BC patients. I'm really enjoying it and do notice a difference in my anxiety level. hope it helps with the extra lbs I've put on with stinking tamox!
Gentle hugs!0 -
mjs, I don't do yoga but I thought about starting now. I just bought the dvd you mentioned at Amazon. Thank you for sharing!0 -
Altbraves - thanks for the info. After asking SpecialK for advice on supplements a few months back, I started taking some, including D3. Initially My problem is inconsistency, but I'm getting better since I re-organized the cabinet where I keep my meds and now take them every day. There are SEs to supplements as well.
Mjsgumbas - hi! Did some yoga off and on. It is a fabulous practice. It is so good it helps with more I can mane here. At the studio where I sometimes go, the practice comes with a powerful upper back massage from one of the instructors that goes around from student to student. That alone makes you want to go back! Do not worry about the extra "padding" ... They are "war wounds" my friend!
Ruth - it is so good that you are out there! Did not know Arimidex did that to you. I'm starting to have a few and slight issues with it...takes 5 minutes to get moving in the morning, feels as if my joints have frozen.
Headeast - how are you 5 days post-chemo?
Hugs to all, Nisa0 -
Nisa, thank you for asking. I am doing much better than what I expected. Tired and some gas and stomach cramps, but mild, I can tolerate them fine. I take Omeprazole in the am for that and I hope I won't have those crazy hot flashes I got two nights ago.0 -
I used to do yoga but have gotten away from it over the past year plus. Less available "me" time...and just when I (we!) probably need it the most. But I loved it when I was doing it regularly.
Here's a link to the Thriving Yoga dvd's:
http://www.amazon.com/Yoga-Breast-Cancer-Patients-Survivors/dp/B0036LG0F4
Thanks for the tip, Mjsgumbas! I needed this reminder.0 -
Good morning all.
My wife does Reiki therapy every Monday which is offered for free at our hospital. She loves it. She says it energizes her body and soul. Check into that if its available. Well, 5 more Rads to go, then we are done. It will be a nice Christmas present. For those of you going through your Chemo, hang in there! You can and will get through it! Bless all of you! Have a great weekend!
One question to the group- She started Arimidex Nov 25th. 1mg pill per day. No side effects yet. For those of you who have used this drug, is there a best time of day to take it and when should we expect to experience side effects? Right now she takes it around dinner time.0 -
Take it whenever works best for your schedule. Do NOT expect terrible SEs. Most people do fine on it.
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Hi JDB53: congrats on the no rads present for Christmas. I am so glad that your wife is doing well. Its a long road with lots of curves, but she will get there. I just finished my chemo yesterday and am so happy about that. Now on to my next phases......by the way, Reiki is wonderful. Once upon a time I was Reiki Level 1 certified. There definately is truth to alternative medicine. I truly do believe that the mind/body connection is powerful. Keep up the great work!
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Thanks Ruth and Girlstrong! Girlstrong, congrats on finishing chemo!0 -
JDB53 - some people experience insomnia with AIs so she may have to experiment a bit to find the right time of day to take it. I usually take my AI at night because I take my vitamins/supplements/AI with dinner, or just after - both to help digest them and to avoid any stomach upset, and it is easier to take everything together.
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Hi Everyone! Hope all is well.
Joe - My SEs from Arimidex - month 3- are mostly "frozen" joints that would not freeze as often if I listened to Ruth who showed me that daily exercise takes care of that. And unpleasant taste that is hard to get rid of. Now I take it in the AM because SEs seemed more pronounced when taken it with dinner.
Girlstrong - Congrats on leaving chemo behind! Hope your hair starts coming in soon.
We are all pretty quiet here. I hope it means everyone is doing well. I have scheduled my transfer surgery in 2 weeks and look forward to no more TEs - 8 months has been enough.
Love, Nisa0 -
Nisa, eight months sounds as an eternity! I will be having it for four soon and seems forever. Still have to wait for more expansions though. Next one is next week and starting with Tamoxifen next week as well.
It is a good feeling to know we are at the end of the treatment and that chemo is behind us!0 -
Hope everyone had a good weekend. Thanks for all the input about the AI. So far so good! No side effects. She sleeps well and she is active so the joint issue hasn't come in to play. Its only 1 mg per day which I guess is the norm? She just called me and has finished Rads this morning so four more to go! She is going in to Reiki now. She is going back to work full time Jan 2nd. As treatment ends I am feeling a bit anxious as she is also, like ok, whats next? I know this is what many of you have felt. Any advise? I think the Holiday season is good timing as its not really giving us much time to dwell on it right now. Tuesday is her birthday. I took the day off and will take her on a shopping spree. That should be fun! Thanks to all, be well!0 -
Jdb, shopping spree!! Just what the doctor ordered!0 -
Joe, shopping is definitely the best medicine!
Happy birthday to your wife! 
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Mary Alice - Happy Birthday and many, many, more! A husband taking his sweet wife on a shopping spree? OGM...I really really want Joe to hang out with my husband.
Headeast - Because I have had an excellent experience with my TEs (and with my surgeon who is incredibly competent), I think of them as friendly. Except when I hug people and I see shock in their eyes, like I just stabbed them with a knife, or two.
Everybody - Where are you? Come on out and share an update!0
