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Discussion:
Newly Diagnosed - Some Questions
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I'm curious about how people dealt with the first few weeks, months, years after diagnosis? Also, how people ended up in the doctor's office to begin with, whether or not they had any symptoms, what their initial WBC was, what their initial reactions were to the diagnosis and the chemotherapy?

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I should introduce myself. My name is Joe, and I'm 29. I was just recently diagnosed with CML on Leap Day, Feb 29.

I went to the doc twice over the course of two month due to seven episodes of unexplained bumps and bruises, some severe, that mostly occurred on my legs. The first time I went in, I had my legs ultrasounded to look for blood clots. No blood tests were done, and I was told that I was healthy.

Fast forward two months, and another big bump appeared on my back, just above my waistline. This one turned in a 12" diameter purple bruise and it felt like I was sleeping on a tennis ball. Next step...blood tests. The doc called me at home and told me to pack a suitcase and head to the hospital. He said my WBC was 250,000, and I had leukemia.

Upon getting an examination the next day in the hospital, I also found out my spleen was massive. It extended from ribcage to waistline, and covered both sides of my abdomen equally. It was the biggest spleen my oncologist had seen in 20+ years. I had been dieting heavily and working out 6 days a week for the previous 4 months, and I had lost the extra 50 pounds I had been carrying. I thought the soreness and firmness of my abdomen was due to the thousands of reps of abdominal workouts I had done.

I have to admit, I wasn't very familiar with leukemia at the time of diagnosis. I knew it was a blood disorder of some sort, but wasn't aware that it was actually cancer. I had to ask the admitting nurse what it was while she was hooking me up to an IV.

I am now back to working full time, and taking a regimen of 600mg of Gleevec and 4000mg of Hydroxyurea daily, along with Allopurinol to flush my kidneys. My last WBC was 150,000 and dropping. I reached a peak of 350,000 right before chemo began. My side effects from the meds have been pretty mild, with no significant nausea or stomach issues to speak of. As a whole, my side effects have been anxiety, trouble sleeping, loss of taste, and some concentration and memory issues. I'm not sure if it's the meds causing this, or the shock of a surprise cancer diagnosis.

Now that you know my story, it's your turn.

Joe
Posted on 03/18/12, 05:15 pm
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Reminder: This is a support group for Chronic Myelogenous Leukemia (CML). We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

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Comment:
Email me when others reply to this topic help
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Reply #1 - 03/20/12  7:44am
" Hey Joe,
Here is a great link for newly dx. Trey put together a wealth of good and accurate info on everything CML! treyscml.blogspot.com/
There is another forum that I am usually on that has a number of threads where people introduce themselves and share numbers. That site is http://community.lls.org/community/...

I was dx last Aug. Count at 250K. Had a hematoma from hockey, and went in after it wouldn't go away. Eventually had a good doc who ordered some blood tests, and went on Tasigna and allopurinol. Was playing hockey in November, and a little rugby with my son last week when he was home from college. My specialist on CML is at the Mayo clinic. I would advise both keeping your general onc and also having a specialist for key times. These would be at dx, 3mo, 6mo, 1 yr. There have just been too many questionable protocols from general oncs for patients on the forum. They have to know everything about many cancers, and can use the help of a specialist who only deals with CML. Sorry about your dx, hope that these links help. The first three months are a bit of a whirlwind. Take care, Jack "
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Reply #2 - 03/20/12  12:55pm
" That is a great site. Thanks. I found some of that stuff on my own, but there's enough reading material on there to keep me busy for a while.

In regards to the specialist, I have been thinking about getting another opinion or two. I live about two and a half hours north of Rochester and the Mayo clinic, and that's likely where I would end up if I ever needed more serious treatment. My oncologist at the local Coborn Cancer Center is not a specialist, but he does have about 10 other CML patents. They all are on Gleevec and none have built a resistance to it or needed any transplants.

How would this work? Would I be required to make the trip occasionally, or would it just be a phone consultation? Would my oncologist work with the specialist, or would I work with them both separately? Would this new arrangement I mention below make any difference?

"St. Cloud, Minn. – Mayo Clinic today (3/12/12) announced that CentraCare’s Coborn Cancer Center will be the first member of the Mayo Clinic Cancer Care Network. The Coborn Cancer Center is the first cancer-specific member of the Mayo Clinic Care Network. The agreement formalizes a long-standing relationship between the two organizations. Coborn Cancer Center physicians will benefit from enhanced access to Mayo physicians and clinical resources, which in turn will benefit local patients and their families."
http://www.centracare.com/community...

Thanks, Joe "
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Reply #3 - 03/22/12  11:59am
" I was also diagnosed when I was 29. Went in for a cough and a pain in my side. Wbc was 240,000, up to 290,000 by the time I started treatment, and my spleen was enlarged. I was still playing hockey once or twice a week so I was lucky I didn't rupture my spleen. I lost 40 lbs in around 3 and a half months because I couldn't eat. My spleen was pushing on my stomach so I'd eat like half of what I normally do and feel full to the point of wanting to throw it up. I was on Gleevec for a year and a half, I'm on Sprycel now. Took a few months to adjust to both. I don't have any side effects at the moment.
The initial shock of diagnosis lasted a little bit, it truely hit the first time I walked into my oncologists office. I accepted it and just live life day to day, making the best out of what I have and not taking anything for granted is how I see things. It's put into perspective what is really important in my life. "
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Reply #4 - 03/25/12  8:28pm
" Hi Joe,
Sorry that I didn't get back to you very quickly, I check in at the other site more often. I am in St. Paul, and go down to see my CML specialist at the Mayo clinic. There are just some things that I am glad that I chose to keep both oncologists. My general onc puts little importance on the biopsy, and more on the pcr. But the biopsy is the only way to see certain aspects of the disease and its ups and downs. The pcr is only effective at lower blood counts, the fish is more useful before that. The only way to verify a complete molecular response is to have a baseline with which to get a 3 log reduction from, or a pcr under .1 on the international scale. My general onc called for no biopsy at dx, and no fish. Also, the Mayo oncologist carries more weight with the insurance companies, as far as what they choose to cover. I checked online for top CML hematologists, and there were 4 at Mayo and one at Fairview. So I went to Mayo at dx, 3mo, just did the 6 mo, and will see him again at 1 yr. It is as my Nurse Practitioner said, I have the best of both worlds, a world renown CML specialist, and a great oncological team for blood draws and support close to home. When there is a difference in protocol, I defer to the CML specialist, and he explains why that he feels that it is important to do whatever it is, and leaves it up to me. He respects the general oncs very much, saying that he can concentrate on CML, but they must be knowledgable in all sorts of cancers.
Trey doesn't see the need to see a specialist, but I am thankful that I choose to. Its your call. But if you do, see what tests that they want to see, and get them done beforehand at your home onc, and allow enough time to get the results back before your visit. Then your second opinion will have all of the data that he/she needs to give you sound advice. Take care, Jack "
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Reply #5 - 03/28/12  12:25am
" Hi Joe - Another resource for you is The National CML Society which is the only organization solely dedicated to the needs of the CML Community in the US. There is a section for the newly diagnosed on the website and there's also an "Ask The Experts" portal you can use should you have need of it. If you call and speak to one of the oncology nurses I'm sure she would be happy to work with you in locating a specialist - it can be challenging to find one. http://www.nationalcmlsociety.org/

CML is my second cancer, so I had some idea what to expect when diagnosed in 2009. I am PCRU and doing well on Gleevec. I've found that connecting with others has been very helpful in getting the information and support needed to address many of the concerns that come with any cancer.

Take care,
Pat "

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