Looking for a a knowledgeable compassionate caring specialist

[RachaleM]

Hello all,

My name is Rachale and I am going to be 53. I am hoping that I can receive some direction and support. I was formally diagnosed with myeloproliferative myelodysplastic unclassified and Thrombosis in November 2012 after my spleen died and I developed a massive blood clout (5 cm in my aorta artery). Ended up with two life saving major operations for which I am grateful.

Doctors could tell that something was going on with my blood 30 years ago when they were inquiring about family history of Sickle Cell anemia when they saw abnormalities but couldn't pinpoint what I had. I had a major heart attack in 2008 which baffled the doctors because I am a health nut, that walked 3-4 miles a day and didn't have any blocked arteries. In the last two years I developed peripheral vascular disease so I haven't been able to walk any kind of distance. My doctor said that it was usual that I had been able to have children, I said I do have 6 children but I lost five children due to five failed pregnancies. When doctors were able to answer my questions about why I was suffering miscarriages, I became very proactive with my nutrition.

I have been trying to wrap my arms around this illness but have felt like there are so many moving parts. it has been really overwhelming and lonely.

I have been really struggling with the medications. even with taking a minimal amount of the medications. I experienced awful side effects while taking hydroxyurea which proved ineffective in reducing my normal elevated Platelet count is close to 2 million). Switched to 2 mg of Anagrelide but also experienced sever abdominal, digestive and elimination pain that with even 20-40 mg of Hydrocodone wasn't touching, finally was taken off of the anagrelide for two weeks and started taking 0.5 Anagrelide since February which brought my Platelet count down to 385k with minimal abdominal pain. The biggest problem that I am now experiencing is excessive rapid weight gain, having gone from 169 to 230 pounds, The first month back on the medication, I gained 30 pounds and have proceeded to gain as much as ten pounds each month.

I realize that my hematologist oncologist works primarily with cancer patients whose life are in more immediate threat. when I hit the 70 pound mark, I cried when the nursed weighed me.

My doctor was unsympathetic and said that she couldn't believe that I would fall into the 1% of patients who experience rapid weight gain even though I eat organically, don't eat any fast food and my diet primarily consist of brown rice beans, small portions of ground turkey, and chicken, greens and some fruit. Meat approximately once or twice a month. After that appointment, I thought that I found a specialist for myeloproliferative myelodysplastic disorders who was completely disrespectful who treated me stereotypical (as a fat ignorant black woman) and condescendingly. He even suggested that since my spleen was removed that I now had more room to over eat and that my abdominal pain is physiological. He hadn't even read the medical records that my primary physician had provided him from all the procedures and blood work ups. It was humiliating. All the side effects that I have experienced are consistent with the overview of the drug. I have started keeping a food journal so that I am never put in that position again. My primary physician is also of the opinion that the anagrelide has triggered the weight gain and is communicating my experience with the pharmaceutical company. I will be working with a naturopathic doctor and a MD who specializes in homeopathy.

I was freaking out because I knew that that kind of weight gain meant that I was likely to develop diabetes and high cholesterol, I am not worried anymore, , I now have diabetes and elevated cholesterol

What is really interesting is that I have always maintained consistent and regular doctor visits and I have gone from being really active, healthy and strong to taking 9 meds (including four blood thinners) per day. while I am grateful to have the opportunity to finish raising my children, I am also seeking a quality of life which I no longer have, there has to be some balance out there some where, My life is pretty demanding with the level at which I raise my children all testing at the 98 percentile with the 3 youngest, 15,16,18 looking at Ivy league or at the least top tiered universities. I got to the point in my career that I was earning 120k per year but now have day in which It's difficult to maintain our household.

I worry that if the myeloproliferative myelodysplastic disorder doesn't shorten my life that diabetes or that I will develop heart disease which my family has a history of and that Anagrelide has a propensity to cause. My children only have me (the children father passed away three years ago.

I feel like the key is working with a great hematologist Oncologist who has a genuine interest in their patients, someone that I can partner with and is open minded and compassionate. Does anyone know of specialist in IL that would be knowledgeable, who is also caring?

The other thing is that I am having a difficult time finding information on myeloproliferative myelodysplastic unclassified, I find info on myeloproliferative or on myelodysplastic but not both together. Medifocus says that provide information on the disorders but I am not sure if this is the best medical information outlet. Any information or direction would be much appreciated.

I am so grateful that I stumbled upon your forum and that I am not walking alone anymore,

Rachale

[DanL]

Rachale,

I am really sorry to hear what you have been through so far. .The MDS/MPN diagnosis is a rare diagnosis, which was my initial diagnosis for about 1 1/2 years, before I visited three different doctors and two of the three agreed that it was MDS with Fibrosis, which kind of looks like and MDS/MPN, but is generally treated like MDS.

Whether or not your hematologist/oncologist is meeting your needs, it is not only common, but useful to seek out additional opinions, especially when the diagnosis is unclear, and the treatment path is not set out. Getting the additional opinions not only provides you with some clarity, but also confidence about what the next steps are.

there is an interactive map on the marrowforums website that has the MDS centers of excellence:

http://www.marrowforums.org/maps/treatment_centers.html

you can use this as a reference to begin your search for a specialist.

[Chirley]

Hi Rachale, I'm sorry you are being treated disrespectfully by your doctor.

You need to find someone who you can communicate with, who respects you and that you can respect.

Sometimes it's not the message the doctor is giving that is at issue but the way they say it.

You said that you have peripheral vascular disease which limits your mobility. I too have mobility issues and because I'm not as active any more, I have piled on the pounds. I don't think I overeat (well, not much). I just used to keep my weight under control by being active. Now that I'm sedentary I should eat less but I can't because I don't have the willpower, I have very little to keep me occupied and I can't see where I can cut down without compromising my nutrition.

I was referred to a bariatric surgeon for consideration of gastric sleeve surgery but he refused to operate because I wasn't obese enough. I told him I was willing to eat more, gain weight and come back . but he said he liked his patients to survive surgery and the odds were against me. He said it would make him look bad if I didn't survive .

If its any consolation, oncologists/haematologists don't like their patients losing weight. Losing weight is not a good sign in their specialty. Also, recent studies have shown that people with a high BMI appear to have a longer survival with cancer, heart failure and kidney failure than those with normal or low BMI.

I've been skinny, normal and overweight and I can attest that their is definite discrimination and profiling of overweight people and worst of all, that discrimination is accepted as normal behaviour by a lot of people.

I too, have a rare illness and quite often feel very alone. Sometimes I have questions that just can't be answered but there is always support on this forum.

Best of luck to you.

Regards

Chirley