Team ILC Warriors
Comments
-
Claire,
Ativan is my friend.
0 -
Hello ILC sisters, I have been on Tamoxifen for almost 2 yrs. I have noticed a difference between brands of generic tamoxifen. Of course generics are supposed to be the same, but that is the active ingredients, there are other ingredients and fillers that differ between brands. I have had some of the side effects that are common, but discovered after my pharmacy changed brands that I didn't do as well. There is a forum under the heading of treatment section that discusses the different brands and side effects associated with each. In the beginning, I was on effexor which did greatly help with the hot flashes, but only used that for about 6 months. When I first came off the hot flashes were back, but have calmed down a little.
After my last revision, I never seemed to get back to felling good. I was fatigued, ached, and felt bad most of the time. I was out of town and had forgotten my tamoxifen. I went to the CVS, where I was and they filled the tamoxifen for me. It was a brand that I had been taking way back before my home pharmacy had a different supplier. Within about 2 weeks, I noticed that I was feeling better, and since have stayed with that brand. My suggestion is that if you do have trouble, consider switching manufacturers, and read the research an info on generic differences.
As for sleeping, I have been using a melatonin pill that is sub lingual. By dissolving under the tongue, it gets in the blood stream quicker and bypasses the liver . Often melatonin is processed by the liver and by the time it gets to the brain is in a much weaker amount. Melatonin, doesn't cause you to sleep, it is a chemical that is naturally released in the brain. When you take it, it helps make you drowsy and easier to get to sleep. No side effects and feeling funny in the morning. Just thought I would share that.
And as mentioned by Claire, anything with benadryl is a no no.
0 -
I have been on T for 2 plus years and hot flashes is about the only SE for me. I use to have bad joint pain but I take SamE daily and it has been terrific. It's normally taken for depression but it also is effective in studies for joint pain. And I figure a little help in the feel good market can't hurt. I buy it at Coscto when they have it on sale because its not cheap but for me very effective. I will likely be moving over to Femara soon. A little nervous about that.
0 -
Great link Claire. Im not on tamoxifen. I just started arimidex and that link made me realize that I havent looked up arimidex interactions. Thanks for the tip.
0 -
As previously mentioned, no real problems with tamoxifen for me, either. I'm in chemo-pause permanently but taking effexor to reduce hot flashes. I have some, but they aren't unbearable and I welcome them actually since it tells me my hormones are calming down....
Claire
0 -
Kestrelgurl, the occasional half tab of xanax (.25 mg) is my friend, too
0 -
Anyone familiar with Anna Fonfa from Annie Appleseed Project? She had ILC and credits her long remission to chinese herbs..Very interesting. She saw Dr. Wong, whom I am considering seeing.
http://www.huffingtonpost.com/jack-schimmelman/cancer_b_1642062.html
0 -
Claire,
Here is my intuition. I took off 5 weeks last summer to enjoy my family as I work alot although at home. During this time I lost my insurance. I was due for a mammogram in June. I called and cancelled it, when my DH asked me why I told him if I have BC I need insurance to pay for it.. he said thats a horrible things to say,,it was and I have no idea why I would say such a thing. Then in September my youngest son wanted a John Cena (WWE wrestler) BC baseball hat. It was $34, my husband said to me "dont you know Nate cares about women with BC, it could be you, get him the hat" Pretty odd that months later here I was with BC.
So, today was my last radiation. I am a mess. I have no skin on the bottom half of my boob, nipple, aerola are both peeling. Little blisters from the side of my boob to the underarm area. What a mess but its over and time to heal.
Saw my MO today also, gave me the RX for the tamoxifen, he said 10 years! I am not premenopausal, estrogen still at 98%. I then asked him for some stats I am very unhappy with-
Breast with rads 5% chance of it returning. Without rads he said it would have been 30%. I am okay with this one and feel all this hell now is worth it for the 5%. He also said I have a 35% chance of BC in my good side. 35%! He said lobular is 35% bi-lateral, he said although my MRI shows nothing it may mean it was too small to be detected. I get screened again in October. If he would have told me this earlier I would have had the BMX. I just couldnt beleive 35%. He also said that due to my Isolated Tumor Cells found near the nodes the tamoxifen would prevent them from finding a place to grow like in my big toe. So he was talking mets.. I didnt know that the tamoxifen would prevent this, have you all heard this? What about the 35%?? I am nauseus tonight thinking about this and not a damn thing I can do. I have got to find a way to accept this or I am going to end up hating my breasts, I do not want to do that. I probably need a good cry, it hasnt come yet. I spend way to much time being brave and strong.
FU cancer!!!!!
0 -
Kim,
I'm so sorry you're in such pain.
I really hope you heal quickly. I can't imagine double dosing like you did. Ouch! I'm wondering if I'm getting overdosed slowly with a total of 60 gray in the end. 16/30 done.
BTW, how was Ron White? ;-)
I've never heard of tami preventing isolated tumor cells from growing elsewhere in the body but that's awesome if it does! But it's also not something I've asked my MO either. I've only met with her once.
Healing hugs to you, my friend, for a speedy recovery. I hope you sleep well knowing you don't need to play laser tag in the morning!
Hugs to all my ILC sisters. xoxo0 -
Hello. Lemon I'm so sorry you are in such pain, I hope that it subsides quickly. The more I read about ILC, its treatments, SE of treatments, the more questions I have. Tomorrow I meet my MO for the first time, sure hope he has a large block of time.
Hugs to all.0 -
Kim,
Congrats on completing radiation! That is a big step.
Please don't second guess your treatment decisions.......we all make the best choices based on the; information we have at the time. This disease will drive you crazy if you focus on the "what ifs".
It's all a crapshoot and we do the best we can to avoid recurrence or mets, but honestly, I believe if it's gonna happen, it's gonna happen.
Rejoice and celebrate getting through another phase of treatment and prepare to give the next one everything you've got.
:-)
Gail0 -
Hi ladies. Hope everyone is doing well.
Lemon congrats. You should be doing a happy dance for completing rads. I hope your skin heals quickly. Get you some silvadene. That stuff healed mine quick. As far as the stats try not to let them bother you. Thats why we take either tamoxifen or and AI is to try and starve any cancer cells that do exist. Dont let the doctor upset you and he should have explained to you how the tamoxifen is going to help with that 35% risk. Healing hugs.
0 -
Lemon, congrats on being done with the zapping. I so sincerely hated the zapping. If you have bad blisters, get some of those gel plasters.
Yes, tamox can prevent mets by starving any cancer cells roaming around.
As for the bilateral incidence of ILC, I have seen conflicting info.
0 -
Dr. Wong is a serious guy and if you want to go alternative, he is probably one of the best people you can see.
0 -
Momine...have you seen Dr. Wong or know someone who has?
0 -
Today is a Xanax day. I still haven't heard from my onc my breast MRI results (test done Friday). The radiology office said they faxed it down yesterday, but I talked to my MO's nurse and she said she hasn't seen it. What could be going on? I'm afraid it's serious...argh. Every time the phone rings my heart and stomach jump.
Claire
0 -
Joelle, no, but I read up on him and considered seeing him at one point. I may still do it, if I can get it organized.
0 -
Claire,
Sending hugs! I know the wait can be maddening. Thank God for the Xanax. Hoping it is nothing and that you'll be able to relax soon!
~ Amy0 -
Claire Im so sorry that they have you stressed. There is no reason that the radiologist' office cant fax it again. They should have done that for you. Sending hugs and prayers.
0 -
Claire,
So sorry they are making you wait. It is so stressful!
When it happens to me, I try to remember that it is never as important to them as it is to me......and to try and never make my clients wait.
Sending positive energy and patience to you!
Gail0 -
Claire, I am so sorry they are making you wait. Please call them 1st thing in the morning, let them know your having anxiety and need your report. Can you go there and pick it up?
Momine- thank you for reminding me the stats are different just about everywhere we look. What a shame we cant get anything concrete.
Gail your right, we do all we can do but we will never know for sure what is planned for us ahead.
I did ask what I could take to boost my immune system, I assume my immune system is low if it didnt kill the ITC's that grew into cancer. He told me nothing I could do. He said that my immune system isnt weak the cancer cells are just smarter than my immune system and change to thrive. damn this disease is evil..
As for being done with rads, I am happy. Im just so miserable with the side effects of it I cant enjoy being done yet. I am worse today than yesterday, I have a couple large blisters underneath.. I know when they open I am going to scream. I will look for the silvadene tomorrow, thanks Melmcbee.
Amy- hang in there, your doing great. I am proud of you, going for 6 weeks is no easy feat. Stay stong my friend. xoxoxo
0 -
Lemon, you'll need an Rx for the silvadene. It's very helpful, and I hope it heals your skin quickly!
Hugs to everyone -- only good news and health for us all! xo0 -
Hi ILCrs,
Still no word...I'm half - afraid to call again, since I want the results, but then don't...you know what I mean. I would be unusual to have involvement this soon, but still...it's what we worry about.
I can't go bug them in person because my MO is 45" away in Sedona, one way. I'm trying to believe no news is good news--if it was dramatically changed I'd like to think my MO would have called me right away?, although I had a nightmare last night that I created a clay demon out of children's claya and it came to life. It was small, like a GI Joe size--I tried to smash it down but it kept forming again, and I finally smashed it down into a bunch of clay and ziplocked it in a bag. Then I woke up.
I guess I'm stressing about the results, it doesn't take a psychiatrist to figure out that dream
I'll post the results as soon as I know. Thanks forall your good thoughts and energy and love...it helpsClaire
0 -
I am soooo confused when it comes to controlling my estrogen with breast cancer. Of course, my onc wishes to push Tamoxifen upon me, but I have chosen to control my estrogen through DIM etc etc....But, now I run across this quote from Dr. Gonzalez and his references to studies on estrogen and I am even more confused than ever! any thoughts?
"There was a misguided comment about estrogen's effect on breast cancer, and a strong criticism of Suzanne Somers for recommending estrogen in a patient with the disease.
Having followed the science of estrogen and breast cancer since I began my research career as a medical student 30 years ago, let me assure readers that the scientific community has very little idea what estrogens (there are at least 22 different estrogens) do to breast cancer. During the 1960's and 1970's before the advent of tamoxifen and other "hormone blockers," oncologists routinely prescribed Premarin or DES, a synthetic estrogen, to their patients with recurrent or metastatic breast cancer. The hormone treatment, still in the texts into the 1980s, fell out of favor with the development of the "hormone blockers."
The recent re-evaluation of the Women's Health Initiative data published just weeks ago, investigated the effet of Premarin, a synethetic estrogen, prescribed to women after hysterectomy. A control group of women who had undergone hysterectomy received no hormone. To everyone's surprise, the estrogen supplemented group had 25% less breast cancer, not more as was expected, contradicting the previous general consensus. There are significant conventional reports over the years showing estrogens do not stimulate breast cancer growth dangerously, but may promote breast cell differentiation. The National Cancer Institute is currently funding a study investgiating the use of high dose estrogen in the treatment of recurrent or metastatic breast cancer.
Also most breast cancer occurs as women age - when estrogen production drops dramatically. If estrogen were the dangerous culprit, breast cancer would be epidemic among teenage girls and women in their 20s, instead of the rare disease it is in these populations.
Nothing in medicine is simple, and Suzanne was not an idiot for suggesting a breast cancer patient consider estrogen treatment, whatever the BRCA status may be."
NG0 -
Joelle, here is a page with some links on this matter: http://www.tree.com/health/breast-cancer-hormone-replacement-therapy.aspx
http://www.medicallessons.net/2011/04/about-the-premarin-study-hysterectomies-and-breast-cancer/
Here is an article about the use of DES to treat metastatic BC: http://jnci.oxfordjournals.org/content/103/12/920.full
0 -
Sending hugs, Claire! I hope you hear good news soon.
I just read here on BCO in the radiation section about avoiding vitamins and supplements while undergoing rads because they can interfere with the effectiveness of radiation. I've been taking a daily multi vitamin for 18/30 days! I'm freaking out right now because my RO never mentioned this to me. Or I don't remember this during our initial meeting. I'll see her tomorrow. Any thoughts, please? Did I just waste 18 days of radiation therapy??? God, I hope not.
Amy0 -
Amy - I didn't stop taking my vitamins or calcium during rads. Once a week I met with my RO and he went over my medical history, including the meds that I take (vitamin, calcium, biotin). He never said a word about dicontinuing these meds while in treatment.
0 -
Amy I don't think you have any need for concern. My understanding is that large antioxidant supplements are the ones to avoid during rads, but that a diet rich in antioxidants is fine. Likewise, sounds like the multivitamin you took was just a daily supplement but not a concentrated therapy.
0 -
joellelee- this article just reminds me that no one simply knows the answers, which makes it all the more scary.
Claire- Yes, obvious what that dream was about.. I am sorry your having to wait, hang in there!!
Say my RO today. Got 3 prescriptions, 1 for the silvadene, 1 for a strong hydrocortisone cream and pure vicodin, without the tylenol, I had never seen these tiny little pills. He said regarding my breast, he had seen worse but my reaction was no typical. My nipple was beginning to invert and underneath it was beginning to bleed last night. Aerola has peeled off revealing pink flesh, I cannot describe how sore and tender this is.. blisters in underarm and side and underneath breast. The creams and pills and helping, if I knew then what I know now... I have do many doubts right now.
Amy- you didnt waste 18 times.. your doing great, stand tall girl you got this!
0 -
Thank you so much Janetanned, Gemini, and Kim! I'm not so stressed now. Breathing a sigh of relief! I'm meeting with my RO tomorrow and will seek her reassurance as well.
OMG Kim! I am so sorry you're in such pain! Thank God for the meds. I hope they help relieve the pain quickly and help speed up the healing process. Let me know when you're ready to do the happy dance and I'll join in. Sending healing hugs! BTW, I'm definitely doing tamoxifen. No reservations about it. There are 1000s of women taking it with little SEs or their SEs are quite tolerable. What we see on these boards is a small minority of women who are unfortunately having SEs and are here seeking support they so desperately need. If I ultimately do experience unusual SEs, at least I know where I can come to find answers and support. I'm also going to ask specifically for the Mylan brand over Teva as that seems to have the most tolerable SEs (for me anyway).
Sending hugs to all of my ILC sisters. I hope you all have a good night. 😴0
