In the few days I didn’t write anything I began to notice that the lumps in my neck were increasing in size. This is always a shocking and disturbing part of cancer. I tried to remain calm knowing that Thursday would come soon enough. I took my chemo. I got my insulin shots. I was having a great deal of swelling in my left arm from my lymphedema. I have also had a lot of muscle pain in my shoulder. It has kept me up for hours each night. Massage helps (for a while). I joked with Tamara that I have heard the expression that people take their pain and put it in a box. I think my box is my shoulder. All the bad stuff just goes there. So I am walking around with sailor’s knots in my shoulder.
I went to my weekly with Dr. Demichele anticipating little more than an acknowledgment of the increased neck lump. What I got was a total change in my chemo plan. She told me the Xeloda was clearly not working. She told me I need a ct scan tomorrow. She told me that my cancer is still being fueled by estrogen and until it is starved of what is feeding it it will continue to grow at this rapid pace. And then the draw dropper, she took me off chemo completely ( for the time being) and putting me on hormone therapy. She said I will need to be on it for 6 to 8 weeks to see if it is working. And she will monitor me closely, but if it works that would be amazing. It can not be used in conjunction with chemo so it was a radical move to do this. I was stunned at the idea. She assured me that this was the best thing to do right now. I expected her to say that more hard chemo was in store. So this was a bit of a shocker.
So this is not a chemotherapy drug. I will not lose my hair or be sick. Although Kelly has pointed out that being on toxic medications for a year has taken a huge toll on my stamina. I may or may not regain my ability to walk long distances and things like that. The name of this hormone med is femara. Pretty huh? I take one pill once a day. The pamphlet reads….Hormone – dependent breast cancers contain protein molecules called estrogen receptors. When no estrogen is present, the estrogen receptors remain inactive. When the estrogen receptors are exposed to estrogen, however, they trigger a chain of events that results in tumor cell growth and multiplication.
So the hope here is that my body starved estrogen will starve my cancer.I am nervous. I am happy to be off chemo for a little while. I am a lot of things. At this moment it is difficult to feel hopeful. Part of me is convinced my own doctor knows I am not going to make it. She told me she had been on the internet looking for alternative and experimental treatment for me. She wants me to live too. This last ditch effort could prove to be the answer. Only time will tell. Today is April 24th. I will be on this therapy until at least the end of June. I am fearful more than hopeful. Not being on chemo feels very scary. Even when it didn’t work I felt like there was a chance the poison would do its job. Now there is no poison. Just a starvation diet for my hormone hungry cancer cells. What now? I may be less tired and less weak. I may feel pretty good for the next couple months. I may see my cancer spread beyond repair. Or possibly even see it wither away and die. My prayer is that this treatment works. What else can I say loved ones? One day at a time.
Hi Andrea:
I respect your silence….sometimes we all need some “time alone” or “time away”….you have such a wonderful family to spend time with…..and that is what is important!!!! Quality time!!!!
Anyway, I am in total support of your regimen….and we will continue to lift you up….and we are sending you white light and peace…..always…I can only “imagine” what all emotional tolls you are paying at this time…and I so understand you…whatever you do, say, write, feel, or worry about…its all “all right”….its specific to you!!!!
I don’t ever pretend to know what it is your body/mind is thinking, feeling, doing, etc….each person is a unique makeup….and each person will have things specific to just them…..tolerances…..treatments…thoughts….feelings…..all of it….I get “you”….so just hang in there…one step at a time…one day at a time…and I hope you relief from the shoulder pain…the swelling…the discomfort…all of it….
Big hugs, sweet lady!!!! Donna in SC
`Alternative’ is a treatment venue we don’t see you write much about. If your own doc is potentially recommending, do you think you would be interested in visiting a nutriitionst/ herbalist. So much data revealed in areas of vitamin, herbal and antitoxon therapies. Curious to know if you have attempted parts or whole of these treatments.
Very fascinating well produced consumer-driven website not attempting to sell any particular products, touting natural/herbal remedies.
http://www.naturalnews.com/023098.html
Always wishing you the very best and looking forward to hearing about positive results from the hormone therapy. Jaija
Jaija, I receive regular acupuncture. And reiki therapy. I practice mediation. Nutritionally I have explored different therapies but have not committed to them as viable treatment. Essiac was once highly recommended as a possibility but alas it has shown in several studies to be contra indicated for breast cancer( yet effective in other cancers) My own personal feeling is that after being a vegan for 12 years and using homeopathy all the time that stage 4 aggressive cancer is beyond the scope of nutritional or dietary cure. I do not discount them in slow growing cancers. But I feel that feeding my body healthy foods and supplements can not realistically address my issues entirely. The alternative treatments we are looking into focus on things like stem cell replacement, nanotechnology, and emerging drug therapy. I understand your convictions. I hope you will never find yourself in this situation. But if you do you may or may not continue to feel that chemotherapy is the worst thing ever.
hey Andrea, you never know what’s gonna work until you try it, and sometimes the thing you least expect to work does. Good luck and you are always in my thoughts!
I love you!
~leah
Andrea, I apologize if I offended you…didn’t say chemo was the worst thing ever….just not sure it is the best thing ever!! (especially if it is not doing the job). I am not a clinician, just a lay person who has researched and tried homeo remedies for my own conditions inclusive of using for my pets one of whom continues to suffer from a catastophic illness. I have become less and less trusting of big-pharmas claims to cure illnessess with meds/treatments that are not always clinically tested/effective as claimed. It’s pretty scary stuff. I echo Leah’s sentiment regarding never knowing what’s gonna work. I think everyone who read’s your on-going journey with this dread disease has that thought in mind and wants so much to provide you any and all suggestions which we do not know if you have tried. Best, Jaija
Andrea, your exchange with Jaija is EXACTLY how I feel about complementary treatment. Once again, you are on target. For those who have benefitted, hallelujah but traditional treatment must prevail. Anything else gained is ‘icing on the cake’ and reason to celebrate.
But do also believe that positive energy and prayer can somehow penetrate the ‘known’ entity of being and guide us along the path of strength and faith in ourselves.
Joy shared with those we love is increased………..Sorrow shared with those we love is lessened. I do believe that’s how it works!!
So for all of your Andrea Army out there, share some of that positive stuff with my husband, Shep, who has just been diagnosed with pancreatic cancer with metastasis to liver. One more to add to the never-ending list of victims ravaged by this hideous disease. STEM CELL RESEARCH ABSOLUTELY should be a national (make that universal) priority.
Thank you for allowing me to continue to follow you on this journey. I so appreciate your openness and vulnerability. You’ve had so much to take in and process on a daily basis….the estrogen starvation just may be the thing that kicks this thing’s butt! I hope you can feel the big hug I’m sending your way!
Morning Andrea-
I too, am looking forward to seeing if this new path is the one you needed all along. I am also happy that you will be off the chemo drugs for a while, and able to spend your time with Kelly and the kids feeling more like you than you have in a while! I want you to be able to do all of the mom and wife stuff without worrying about not feeling well. You deserve days and days of sunshine and warm kisses and all of the love of those who surround you. You are the light that they come home to-chemo or not, but I will continue to pray that this will be what we have been hoping for for you! Wishing you continued feeling better and lots of hugs and support. Enjoy your weekend-feel well-you are Blessed!
Michelle
I am always learning from you my friend! I pray this new therapy works well for you and gives your body time to heal from the ravages of the chemo. Love ya!
I have very high hopes for this change in treatment. I’ll be praying for & expecting great results!! Enjoy your great chemo-free time!
Andrea,
Not long ago I had an IBC scare of my own and found this site and all those volunteers who staff the site to be of great help. I continue to receive their information, questions from other IBC patients, etc. daily through emails. Check it out, post some of your questions and concerns with them, and see if other IBC patients have or are experiencing some of the symptoms you are or have tried the suggested route your doctor has take, as well as perhaps someone has tried other natural methods that could help. Just a suggestion…..continuing to pray and think about you daily here in Crawfordsville, IN
http://www.ibcresearch.org/
My prayers continue to be with you and your family. I pray this treatment will work for you. And it would be even better since you would not have to be sick or lose your hair. Please continue to be strong. You are an inspiration to all us women with you strength and courage. God Speed.
Andrea,
It seems like this break in the chemo is just an extension of the vacation you will be taking soon. Embrace your time off! Jesse and I praying for you, Kelly & the kids.
All the best,
Rebecca
that’s outstanding news!
Andrea,
I have follwed your story and, in fact, posted to your site one other time previously. My intrigue is that you were diagnosed with IBC 4 months earlier than I was. I believe you were originally diagnosed with an earlier stage, as well; I was Stage IV out of the gate, having spread already to lymphnodes and numerous bone sites. I have held my breath as I have followed your story because my treatment program has been a mirror image of yours…just as aggressive, aside from the fact that it has occured 4 months behind yours.
I began Femara one week ago and can only pray that it’s the answer. My last chemo was December 13, before double mastectomies in late January, followed by 28 radiation treatments that absolutely tore me up. I, like you, believe that my cancer is too aggressive to “cut the Skittles” out of my diet and have it make any difference. I think you are right in your feeling that diet and supplements are better left for the early stage cancer patients. My concern with the Femara is that everything I’ve read about it speaks to how effective it is in treating “early stage” estrogen dependent breast cancers, never any mention about late stage, such as the nature of yours and mine.
But the proverbial “they” are the experts and I’ll do anything they suggest will save my life. I find it interesting that I was finding it interesting 🙂 that I was being put on Femara which, to date, had not been prescribed for you. I felt this is where we parted ways as far as similar treatments then I read today you are, in fact, being put on Femara as a hormone based treatment program, as well.
Keep up the fight!
Sandi, a warrior, too!
http://www.caringbridge.org/visit/sandijohnson
Oops…by the way, I am on Femara indefinately!
Sandi
http://www.caringbridge.org/visit/sandijohnson
Hey Andrea:
My vote is with you and Toni, also….I wholeheartedly agree with your reply to Jaija….well spoken, my friend!!!
Hugs…Donna in SC
Andrea:
I am hoping that this is good news that I am going to share with you.
I am on Femara (very expensive in Canada) and have been since November. I went for a ct in March and nothing had changed, I was stable. Yes, I still had the cancer in different body parts, it just had not grown. For me at stage 4 that is a good thing.
Now that you are off xeloda, I can say that it did not work for me and I just read on the IBC research site that it has not worked too well for many with IBC. Doctors need to know that.
Andrea you really described it well, the part of being on nothing but a little tiny pill. I felt and still feel the same way. But the scan showed the same. By the way the new skin mets were not cancer, they were my fear and were benign tumor and ecsema.
I will let you know ahead of time though, get ready for your shoulder to go from most terrible pain to most, most, most terrible pain. Femara really affects the joints. I can barely get up sometimes on my knees and can hardly use my shoulders. They tell me from my last ct that it is severe arthritis now. Whatever, I never had it before Femara, except the pain in my shoulder on the side where the lymphedema is. I now take celebrex for it and it helps a lot.
Anyway dear girl. Anything for me is better than that chemo gut.
All the success to you and to your friend Sandi on this. All success to me too.
God bless you sweetheart.
Love Renee
Toni, Donna, forgive me but I don’t see a `vote’ scenerio here. I am certainly not the enemy. I was trying to help make suggstions of an herbalist possibly suggesting alternative chinese herbs/treatment(s). My tone was not meant to be definitive. I never wrote to stop with conventional meds nor attending to the recommendation of your clinicians. I was merely providing (an)other insight that have helped other patients. Gimmee a break. Everyone reading these posts are wracking their brains to try to help in any way possible. It is quite likely writing thoughts in an e-mail does not come across `literally’ sometimes as you hope. In that case perhaps it is best I don’t write again. My thoughts were only with the best intentions. Jaija
just a p.s….why it may always be helpful to do your own research regarding commecial treatment drugs…..read this post.
http://bcaction.org/index.php?page=fda-letter-february-27-2008
BC Advocay groups are not always in sync with FDA `standards’ as this letter reveals.
It is really confusing to we consumers who put our trust in the FDA.
I have learned that consumers have to research, research, research conventional treatments and discuss with their clinicians who sometimes themselves are unaware of the concerns that are revealed.
Jaija, I am not upset at all at your suggestion. I have not sought out herbal/nutritional assistance for several reasons. 1. Financial. Supplements cost a lot of money. Even with the help people give us I seriously find these out of of my league. 2.They do not give specific information about how much and how often to take them. 3. Even though you do not trust the FDA I wholeheartedly believe that these medicines are not in any way tested or proven safe and effective. Why should I spend thousands for medications that are unproven? If my insurance covered them I would likely try it. It is not a problem for me that you made a recommendation. I hope you are not offended. I am not. Sincerely, Andrea
Jaija, I surely didn’t mean any offense at you either…perhaps “vote” was not a good choice….opinion would have been better. Like you said….internet is often very hard to interpret since you can’t hear the inflections in one’s words….so, please, continue to post if you so choose…
Andrea, you once again, so eloquently, I might add….expressed your opinion so well….you really ought to find a publisher for the blog…your posts….they are tremendously well written…
Hope today is a better day for you…take care…..hugs…..your bud in SC