I am 53 and for approx. 4yrs. I had been dealing with extreme hot flashes. I would get bright red (including the whites of my eyes) from head to toe. My OB/GYN said it was menopause and put me on HRT. I stopped taking after 9 mos. as I saw no change and was hearing and reading that this is not necessarily a good thing. Since Jan. 09 I was so fatigued all of the time, started losing weight (not trying) extremely low blood pressure along with rapid heart papitations and dizziness. Again, at annual exam all passed off as menopause - I just have an extreme case. By Aug.09 I was having extreme explosive diarrhea up to 5 or more times a day. By Oct. I had continuous severe swelling from abdomen to feet. I went to primary physician after work one morning in pain from swelling and was seen by a Dr. I had never seen. Dr. looked at swelling and immediately noticed I had a butterfly rash on face (I had this since May - also blamed on menopause) and thought outside the obvious and suspected Lupus. Ordered blood work - came back positive with a low count. Referred me to a Rheumatologist - he ordered blood work and a 24hr. urinalysis (5H1AA) to rule out diseases with similar symptoms of Lupus before doctoring for Lupus. These symptoms can also mimic IBS, Crohns disease and others. The urinalysis came back positive for a very rare and often
situation that not all things are the obvious and we need to look outside the box. Not everything can be blamed on menopause - at this time I am living proof! Will be happy to answer any questions.
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Hi Zebra23 - How wonderful to know that you've become an advocate for yourself and others! You've done a lot in a very short time, and your passion comes through in your words. I'm so glad you found our site and you're bringing this information to others.
I too have a rare form of cancer - chronic myelogenous leukemia - that most people, including many doctors, have never heard of. I've found that the rare cancers have a lot of common concerns that stem from getting less attention and less funding than the more common cancers. I've found a literal world of support through global support groups involving patients from around the globe who share my disease. When it comes right down to it, we are all humans and all need support, no matter what sex, age, race, color, country or language. I'm looking forward to hearing more from you, and about you.Thanks for all that you do to help spread the word about carcinoid cancer!July 2, 2010 - 4:33pm
Zebra23 - Thank you for sharing your story with us. Carcinoid cancer, like many rare cancers, does not get a lot of public attention and your story is going to help alert others about this condition.
You may already know about this, but in case not, I wanted to make you aware of the Carcinoid Cancer Foundation which provides helpful information and resources for patients and caregivers. Their website is at http://www.carcinoid.org/
Please let us know if there's a way we can assist you, we hope to hear more from you and learn more about your journey.
Take care, PatJune 29, 2010 - 5:36pm
Pat, thank you so much for responding. I am aware of the Carcinoid Cancer Foundation. On June 18/19th my family formed a team "Carcinoid Crusade" and collected donations for Relay for Life Walk in our county. I questioned the American Cancer Society office in my city and they had never heard of Carcinoid Cancer nor is this on the list of cancers that receive funds from the relay. Our goal throughout this 2 day event was to bring awareness to Carcinoid - we were successful in that respect as many people questioned us and I was able to talk with a local oncologist on the radio about cancer and I asked him to explain Carcinoid Cancer to the listening audience. I saw him at the Relay and he told me from that on air discussion 4 people called for an appointment to have their symptoms checked out. We wear our Carcinoid Cancer wrist bands and t-shirts and have many people ask us questions about this which is our purpose - to make people aware so they will tell others or think about if ever the need arises. Let me know if I can help anyone or answer any questions. Zebra 23July 2, 2010 - 3:52pm
Wow. What a series of experiences you have been through. Thank you so very much for writing.
I am so sorry that it took so long to figure out what was affecting you and that you are handling medical issues on so many different fronts now.
How are you feeling mentally and emotionally? Do you have family or friends in your support system? Do you have a therapist or a support group? Are you having any insurance issues?
Have you found this online support forum before?
Do YOU have any questions, Zebra? Is there anything we can help you research or find the answers to?June 29, 2010 - 8:24am
Thank you for responding. I have a wonderful close-knit family that has always been supportive of each other. I stand in awe of the support I have received from my co-workers. I work midnights @ the Post Office. During heart surgery & recovery I was off work for 4 months and not a day went by that I did not hear from someone in one way or another. My husband and I attend a Carcinoid Cancer support group once a month. There are just a handful of us but we keep each other educated and keep in touch when someone is going through a procedure or just down. Mentally & emotionally I am great - I have my moments as does everyone - but I plan on staying strong and fighting with everything I have to prolong the inevitable. Yesterday, July 01, I had a SIRShere procedure done - shooting glass beads full of radiation into blood supply of liver tumors in hopes of slowing things down. I am scheduled for 2ndJuly 2, 2010 - 3:01pm
procedure Aug.11th. I have high hopes that this will help - I will try anything at this point to slow things down. From day 1 I started my own
researching on the Internet, books and any thing I could lay my hands on.
Most of the time we are educating the medical field and others of the cancer as most have never heard of it. My goal is to bring awareness to
others so that if ever needed - they can be diagnosed a lot sooner.