Hi this is Paul updating Cynthia’s blog.

Chris came to visit for 10 days. Loved it!! Especially Cynthia as her only family here is myself and that hurts her that the family is so far away. No one else to go to, to share her feelings or for comfort. She could use the phone but its not the same as in person.

The last time she wrote was to tell you about a new trial they wanted to start last week but it didn’t happen. We had asked to see a breast doctor, specifically an IBC doctor. We got an appointment with Dr Moulder, a breast oncologist and clinical trial doctor. She is the one who would of administered the new trial. We asked for an IBC doctor oh well. We went to the patient advocate to try to arrange a visit to the IBC doctor. Patient advocates are usually used to change doctors. We were not interested in changing doctors; we just wanted to be seen by the IBC doctor so we could make sure the new trial she was going to get is the right one.

When we first came to MDA for treatment in Oct of 2010, we thought we would see the IBC doctor as this was a rare disease. It never happened and the oncologist told us they all work as a team there. Ok. What did we know, so we never did see one, until last week.

So while trying to see the IBC doctor we saw our oncologist first. When we saw him he told us she did not have IBC. We were shocked to hear that from him. The way he figured it is when we first met him, we told him about the Ultrasound of her breast back in August 2009 and how the nurse was rude to Cynthia for not getting a mammogram instead. Little did we know that IBC usually happens within a 3 month period. That’s how fast it grows. So the doctor says, Aug 2009 to June 2010 (the day of diagnosis) he said that isn’t IBC. So there was a misinterpretation on his part due to the statement we gave back in Oct 2010. Lesson learned: never talk about anything that isn’t relevant to the disease.

In the meantime, our friend, Terry, an IBC advocate, arranged an email exchange with the IBC doctor Dr Ueno. He is the Executive Director, The University of Texas MD Anderson Cancer Center Morgan Welch Inflammatory Breast Cancer Program, Houston, TX. One of the lead doctors for IBC. He asked us to make an appointment to see him last Tuesday. We saw him, asked lots of questions, and he even examined her. Since coming back to Houston in November, only the first oncologist examined her. Her trial doctors did not want to see her. So the doctor patient thing at MDA is pretty sacred. Doctors do not take other doctors patients. But for some reason, he did talk to our trial doctor and it was agreed between them that Dr Ueno had a different trial that was better suited for Cynthia. So now Dr Ueno is our doctor. We are happy for that. We were so worried that no one would see what she is going through with this IBC.

We will not know what trial it is until we talk with the doctor on Tuesday. Monday she needs to have skin biopsy’s done and the doctor should start the trial on Tuesday. I know the drug mentioned is Dovitinib. The research I did on this, seems to be in pill form. I will updte more after we find out.

Cynthia’s condition:

It has been almost 3 weeks with no chemo. Once the first trial was stopped because it didn’t work, she had to wait 2 weeks to start a new trial. It was 2 weeks last week when that trial was canceled and now this coming week is when the IBC trial will start. So that’s almost 3 weeks. It seems like the cancer is worse. She is most of the time in constant pain from the skin cancer. She describes it as a burning, the same as when someone lights a match and puts it on her skin. She cries from the pain. Sometimes she feels she can’t take it anymore. I feel helpless. She doesn’t want to go to the ER because she thinks they won’t know what to do. She is probably right. The areas infected also itches terribly. Nothing you can put on it will help. She says Benadryl works and uses that, but it’s not good enough. It is still a constant itch. She is using HydroMorphone (a watered down version of Morphine) for her pain. Today it seems like one pill of 2mg just doesn’t work anymore, so she took a 2nd pill. Normally the pills are taken one every 4 hours..

I did not realize what cancer can do to a person. Especially her kind. Remember, this is not your normal breast cancer. This cancer started with an itch, no lump. One of the rarest types. After they thought they got it out of her from her surgery in Feb 2011, it came back almost 2 months later in the skin. It is still called Inflammatory breast cancer.

Her cancer is covering most of her chest, abdomen, pelvic area and back. When it starts out, it is like a skin rash. It then turns into nodules and then it gets bigger. At some point the nodules will leak like it wants to burst open. The areas infected feel like a piece of leather. It is no longer soft skin but hard. She says she feels like she is in a harness of some type. When I feel it, it is very hard.

She often asks, Why me? I often ask, why her? So if you think because you have no family history of Breast Cancer, forget it. You don’t need that history to have it anymore. You can still get it.

The most unfortunate thing about Cynthia’s condition, is when she first went to see her doctor in Norway, also a woman, when Cynthia showed her breast to her, she put no sense of urgency on the tests that were done. It took 2 months to be seen for the test. Had she of done her job, possibly we would not be here now. I feel so upset with the Norwegian health system.

Well got to go to ER. Pain is getting too severe now. It is 11.15pm

Will update after I know more.

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