Archive for May 14th, 2010

Cancer the Poem

My husband and I are grieving for a friend who now has terminal cancer. Please let there one day soon be a cure for this dreadful disease . Let Cancer be only a distant memory.Let us one day no longer live in fear of its return.

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This is Kirstis story, she was not to be one of the ‘Lucky ones’

Invasive Lobular Carcinoma..Metastic breast cancer.

This was also my diagnosis, but NOT in the breast. This is why my case has baffled doctors and is now in the Medical Journal.

Kirsti,I think of you often.


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FEMARA the new ‘Wonder drug’ the answer to all our prayers . But is it?. Tamoxifen, not the first choice for me by my Oncologist. Femara was ‘perfect’ for me because my cancer had spread to other parts of my body.

An Oncologist is just that and nothing more. I was not told about side effects from this wonder drug only that I must take it the same time everyday. If you want tea and sympathy, you are knocking on the wrong door. Your GP? knows very little about these anti cancer drugs, if anything at all. We all need a good Internest, a doctor in the hospital who works with your Oncologist. When you are in pain you go to him. I went severeal times to my Onc. and told of the terrible side effects I was having with Femara. I may just as well have been talking with myself. It seemed according to him no other patient had complained. I found this very hard to believe.

I joined every blog I could find with people who were taking Femara and what did I find ,they were ALL suffering.

I made an appointment with Dr.Bartholo…who asked what on earth was wrong with me as I could hardly walk into his office. My hands and knees were swollen. I could not even take the cap from the toothpaste,the soles of my feet were on fire. I could not write or brush my little sprouts of hair that had just started to grow.

I told him I was taking Femara. I know at this point I knew much more about this drug than he did and told him of Femaras side effects. He told me to stop taking it and he would speak with my Onc and get back to me.

Dr.Bartholo…always keeps a promise and sure enough he asked me to make an appointment to go and see him. In his office he asked me if I would be willing to try something. I trust this man 100% and said yes. Dr.B. gave me a treatment of steroids for a short period , 21 days. He told me in a few days I would be feeling much better and I would ask him if I could continue the drug…but he would have to tell me no.

As if by magic the swelling and pains all disappeared. I felt like I was walking on air. The next time I saw him I gave him the biggest hug I was able…He laughed and said ‘For me quality of life must come first, what good is living five years in pain, rather one GOOD year pain free that you may enjoy’.

I am taking Tamoxifen ,although Oncology is far from happy but has said rather Tamoxifen than nothing. The chioce is mine. On this we are agreed, it is my life and I refuse to live it in pain.

Here are a few examples from people who are taking Femara:

My only advice I can give to an Oncologist is LISTEN to what your patient is telling you and do NOT brush them off.

3 stage 2 breast cancer . cognitive impairment, fatigue, joint pain although I manage to run 4 miles a day-new symptom is terrible gerd similar to what I experienced with chemo. esopagus to stomach burning sensation which worsens after eating. getting off femara for a month but from what I read might not be long enough to get symptom relief. I’m afraid of long term effects but also afraid to decide to stop femara as I am fearful of recurrence. anyone else with gerd or stomach problems? F 59 4 years
2.5 1X D 5/6/2010
3 Breast Cancer I had DCIS Breast Cancer, very large lumpectomy and alot of radiation. 2 years ago. I was on Tamoxafen for two years. Tolerated ok. Now they have changed me to Femera, after 4 months it is close to unbearable, the aches and pains are terrible. F 45 5 months
2.5 1X D 5/2/2010

2 Breast cancer Extreme body pain – head to toe, very stiff, arthritic feeling, headache, insomnia, hair thinning/loss, no appetite, depression, lethargic, fatigue, constipation, hot/cold flashes, high cholesterol. With all the horrific side effects of Femara, it is difficult, if not impossible, to appreciate any benefits of this drug. It has horribly impacted my quality of life. F 49 32 days
2.5 mg 1X D 5/1/2010

2 stage 4 breast cancer I just recently started having joint pain – bad in my knees and feet. I have had insomnia since I started on the drug. Am EXTREMELY tired all the time. I thought that was just from coming off the chemo – now that I see all these comments it makes me think it is this drug. I too feel very old. I was told I have to stay on this the rest of my life as this was my 2nd recurrence of breast cancer – it came back on my lung after 17 years cancer free. This drug was supposed to be the new miracle drug – It is VERY expensive even with insurace and it seems to be causing an awful lot of problems. I sure hope it is worth it. F 53 1 years
2.5 mg 1X D 5/1/2010

2 Stage II Breast Cancer I have been taking femara since August 2007 and I feel as if I am slowly losing my mind. Problems with memory, especially with words or phrases during routine conversations. I’m extremely tired all the time, my joints ache, even the joints that are not afflicted with arthritis. Sex has become almost non-existent due to vaginal drynessl I can only sleep if I take Lunesta, Demerol, & Neurontin. I also take Effexor in the AM, Levothyroxine, and Triamerene. I’m beginning to lose track of time, dates & important events. Can anybody please help me? F 54 2.5 years
2.5mg 1X D 4/27/2010

2 ductal and lobe- triple positive severe joint pain, hands, shoulders, knees, hips and feet. Hot flashes, memory foggy, headaches, dizziness. Doctor finally has taken me off of the drug. I am off of it for one week and will not take the new one till I know this one is out of my system. Does anyone know how long it takes to get out of you body? F 56 5 months
25mg 1X D 4/27/2010

5 idc, left breast headache, neuropathy in feet. neck & wrist, thumb joints hurt. Muscles ache. Ribs hurt if I twist. sweat a lot upon exertion. losing words while speaking. some swelling of extremities. horrible insomnia.

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