Thursday, February 2, 2012

Smooth Sailing

I had a visit with Dr. C. yesterday and got the all-clear to start my chemo.  Not a whole lot has changed since last time.  My blood counts are still great, I'm still tolerating the chemo well, no particularly alarming changes.  All the same, I'm scheduled for my bi-monthly MRI next week just to make absolutely sure everything's behaving as it should.  Except, of course, for that pain in my side.

Dr. C. gave me a physical exam and asked plenty of questions about the kind of pain I felt, when I felt it, what I could do to cause or alleviate it, and how much of a problem it was.  He concluded, with a reassuring confidence, that nothing's wrong.  He's sure that the pain is skeletal or muscular and felt no abnormalities along the edge of my ribcage, where I feel the pain.  He thinks that there may be an old injury or a flaw in the cartilage somewhere and that neither is anything to be worried about.  The fact that I'm feeling it now could be due to my sedentary line of work and my posture while sitting, and he suggests I get more exercise.  It's entirely possible that what I perceived as swelling along my flank is actually from losing weight adjacent to that area.  Even though he's absolutely sure there's nothing to worry about, he told me he could get me a CAT scan if only to put my mind at ease.  I haven't taken his offer yet as I'd like to speak with my endocrinologist first (though Dr. C. is certain my symptoms are not glandular or internal). 

I feel confident in his skill as a physician, and in his diagnosis.  I'll have to wait and see just how much that small bit of uncertainty gnaws at me before I make my decision on that scan.  I think I'm going to wait to see if it gets any better or worse as I follow some of his recommendations.  Even if the intermittent pain never goes away, I can live with that.  Just so long as it's not something we need to address RTFN.

8 comments:

  1. Have you ever heard of the ketogenic diet. It is used in children who have refractory epilepsy and who cannot tolerate the antiepliptecial drugs. It is used by the medical profession. My point is that it was used on a patient in Italy who had a GBM. The article is in Nutrition and Metabolism. "Metabolic management of GBM using standard therapy together with restricted ketogenic diet:Case Report". There are also quite a few articles from Johns Hopkins about hyperglycemia being associated with decreased survival in brain astrocytomas. It is stated as a fact that hyperglycemia promotes tumor cell growth. Makes one wonder if restricting amount of sugar and carbohydrates would make a difference in decreasing tumor cell growth.

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    1. Thank you for the information. I have not heard of the ketogenic diet and do not personally have trouble with seizures, but I do know a fellow patient who does and who reacts poorly to anti-seizure meds. From a quick glance at my friend The Internet, it seems that some reputable organizations think it has some scientific merit, so I'll pass it along (I'm generally cautious about diet plans).

      From what I understand, hyperglycemia itself doesn't have a direct impact on cancer, but the body's reaction to it does. Kind of like how anaphylaxis can be lethal but is caused by the immune system's overreaction to allergens rather than the allergens themselves. Either way, seems to me it's never a bad idea to cut down on sugar!

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  2. I listened to a podcast discussion about brain tumors from a notable group of oncologists. One was from Duke, one from UK and 2 from Australia. A patient in the audience asked the Duke oncologist what would he say is the cause of the increased number of brain tumors since he has done research on the subject for the last 20 years. His answer was that he did not think cell phones played any role but he thought there was a link to our Western diet. I think that David Servin-Shreiber's book "Anti Cancer" does have some useful advice.

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    1. I wouldn't be surprised if our diet is part of it. The question is whether it's causal or contributory. Still, it doesn't take a doctor to tell you that a diet high in processed fats, sugars and salts isn't healthy for any number of reasons.

      Too bad it tastes so good.

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  3. Has your oncologist mentioned that you would stay on another 12 rounds of temodar when your first 12 rounds are over? My husband has 3 more cycles to go and wants to go off of the chemo. It makes him very fatigued and mentally foggy. By the time the fog lifts and his fatigue lessens it is time to start the next cycle. I have been thinking of taking him to Sloan Kettering but if they are going to say that 24 months is acceptable protocol then there would be no need going there for a second opinion. My husband has a non-enchancing grade2/3 astrocytoma that has shown regression and is stable now.

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    1. I'm not sure what they'd say about your husband. Each patient is different and they're very clear that no one really knows the "ideal" length of treatment. The reason they picked 24 with me was because I still showed signs of non-progressing cancer and 24 months is the longest course of treatment that the makers of Temodar recommend. I am free to ignore that recommendation and go longer than 24 months. I am also free to disagree with my doctors and stop taking Temodar entirely. They wouldn't fault me and have told me that either of those options would be reasonable, even if they think I'd have better luck with 24 months. They even told me, point blank, that some studies indicate there's no benefit to taking Temodar for longer than 6 months.

      In other words, they are very open and honest about what they do and do not know. They do not claim to know the best treatment in this case. What they recommend is what they believe to be the best treatment, given all evidence and a detailed knowledge of my specific case. Seeing as they are some of the best in the business, I value their opinion pretty highly, even if it's still only an opinion.

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  4. Knightly,

    I wasn't sure how to go about this but I'm a 23 year old female who had a whole lot of terrible health problems come up in the last few years out of nowhere. I happened upon your blog because I googled a rather painful lump that appeared on the top of my head out of nowhere and it is huge and I was trying to figure out what it was (because I hadn't hit my head...especially not the top) and I saw the cancer forum post and was checking it out. I have consistently had what was written off as an unimportant and non dangerous mass in my brain and since I've had chronic daily migraines since I was 5 or 6 I asked if it could be that causing it and the just kept saying no don't worry about it. My migraines have progressively gotten worse and I'm now epileptic, and have a myriad of other health problems (including a few in my heart and so on...I'm on disability and am not expected to improve and all kinds of stuff is popping up and it's starting to get terrifying) and now this giant protruding lump that hurts like hell and I'm beginning to wonder if it could be the non issue mass that's really something worse causing terrible problems. I wonder if I should insist on another MRI? Well, it can't be anything with contrast as I was recently diagnosed with renal insufficiency and my kidney function is too bad to handle any contrast. I just keep wondering what's next. I'm getting sicker and there's less time to recover between hospitalizations and such. I have something to add to the list of things really wish people would quit saying: "Well, you're too young to have problems like this." and I want to just say well obviously not if I'm 23 and have several cardiac problems, epilepsy, nerve damage, three separate chronic pain syndromes, refractory occipital neuralgia, fibromyalgia, diabetes, chronic daily migraines and muscle spasms, renal insufficiency (kidney failure), had cervical cancer (but caught it early enough and was totally resected), pulmonary edema, and that doesn't begin to cover the stuff that has emerged but hasn't had a name put to it by the doctor yet... And those people tell me I'm too young for this stuff...they should tell the diseases that. Anyway, I'd love to ask you some questions and hear about all of your experiences or whatever you want to talk about because I find your blog uplifting and helpful to others and I just want to say that even though I may be a stranger, I still care and I am here if you should want to talk to someone else about anything. My email address is LiveLaughLoveVengeance(at)yahoo(dot)com and my name is Alysha. Hope that you are feeling well. Also, hope to hear from you soon. :-) thanks for reading. Best wishes. 

    Alysha

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    1. Wow. That is quite a hand you've been dealt, Alysha. I'm glad that you've enjoyed my blog, and thank you for taking the time to let me know and to share your own experiences.

      I guess to start with, it's unlikely the lump on your head has grown from a brain tumor as brain tumors are typically restrained by the skull. That said, it is something that's causing you physical and emotional distress, which I feel is enough to bring it to a doctor's attention. Same with the migraines and epilepsy, particularly because they've worsened. I can't make a diagnosis, but I do know that I started to get optical migraines due to my tumor pressing against a blood vessel. There may be something similar going on in your case, even if the mass is benign and does not need to be addressed. After all, it's still taking up space. Did the epilepsy start recently?

      Were I you, I'd try to get an MRI. Without contrast it won't paint as clear a picture of what the mass is doing, but it will at least give you and your neurologist some indication as to whether or not it's stable. When was the date of your last MRI? I know that many people with benign or controlled brain masses receive MRIs every 3-12 months to make sure they stay benign and controlled.

      Fortunately I have not had anyone tell me that I'm not actually sick due to my age. Maybe people have expressed surprise, and once or twice I've caught a glimpse of sorrow as they do some math. Once with a doctor who had a son my age. Again with a lab tech who was so close to my age she wondered if we'd gone to high school together.

      I'm doing all right. I had an MRI myself on Wednesday and it showed no progression, so I'm pretty happy about that. My mind has felt unusually clear lately. I think I'm going to write a post about all that soon.

      Hang in there, Alysha. I know it can be frightening, but you're not alone.

      I'm going to send a copy of this to your e-mail address (thanks for including it).

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