Sickle Cell and Breast Cancer Treatment

Anonymous

Sickle Cell and Breast Cancer Treatment

Twinmom14

I have Slightly blood pressure, slightly hi cholesterol, managed by water pills and statins. I also have Sickle cell trait. Well, after have a 9mm tumor removed, accelerated radiation, which I pushed to have done before 12 weeks passed from surgery, two different oncologist, and neither seemed to concern themselves with my sickle cell trait status and a history of leg swelling, and VOC. Immediately when I started taking Tamox, I was getting breast pain. The doctor just replied," weird" . The pain started about 30 minutes after I took the pill every time I took it and lasted for hours. The pain was almost as bad as surgery. I had only 2 hot flashes in the first three days, but no more. I also have severe tonnitis now. My ears make me feel like I'm having some kind of conscious seizure. But not even 3 weeks on tamoxifen and I am having leg swelling and pains in my fingers feet and legs. One morning my legs were so weak and cold , I was jumping just to get feeling in them.. This is not joint pain, or bone pain. It's really bad circulation. I know what SC crisis is. It's pain in the fleshy parts with no history of injury. I've had them too many times over the years. The doctor wanted me to get a Doppler if it happened again but I know after having them before, that they are not true DVT clots, but cells damming up. Hydrate and pain reliever are the usual treatment. But this time the crises are in too many places at once. Fingers, legs, feet. So I stopped taking Tamox and told my doctors office. I'm not getting a stroke off of this. And I don't want organ damage. So now I'm scheduling to have my ovaries removed and then plan to take an aromatase .... It really frustrates me that as many African American women that get BC, they don't have better studies about the affects tamox has on the SC condition. Clearly there is a problem if you have high clotting tendencies. And I feel like I'm the Oncologists sickle cell expert, since they don't know. I only found one study that mentioned sickle cell crises after starting tamoxifen. It was anecdotal, no further research. They thing is the patients in the report were just like me, in their 50s, HER2+ , stage 1, and 2 weeks to a few months after starting Tamoxifen, they had a SC crisis or a stroke, or organ damage. It's serious for SC patients, not "a low risk factor."

Moderators

Hi there, Twinmom14-

We are so incredibly sorry to hear about your experience - breast cancer is hard enough to manage without also trying to manage your SC and it's infuriating that your doctor didn't try to do more to help (or at the very least, point you in the right direction to someone who could). We're so glad you advocated for yourself here, and we hope that your SC crisis has resolved or is resolving and you're starting to feel better! And we hope you continue to post here to share your story and connect with others who understand what you're going through.

The Mods

wallycat

I know nothing about this except to say I was watching a PBS special on CRISPR technology and sickle cell can be genetically treated...that's not a lot of information but if you're interested, maybe someone at your hospital can help you. Genetics and CRISPR are very techie and I'm not well versed on it so again, that's about all I can contribute here.

Best to you.

Twinmom14

Hi, yes thanks, I’m familiar. Treats the SC anemia. I’m just the SC trait with excellent quality of life with only a few incidents over 50 years. It’s been forgettable until doctors go down the list side effects. And then they ignore it, that’s the frustration. And when a crises happens, then they might acknowledge it.

I really want to get ahead of this cancer before it comes back, but I feel like an experiment rather than a patient.