al from canada
09-16-2005, 07:47 AM
Good morning,
Alot of the postings reference the results from a single blood test: ie, my alk. phos. is up, etc.
I know that I watch blood results like a hawk, have our onc trained, (I often get the results before he does); and when I get them I go into this deep-analytical zone.
Here's what I have learned:
1. be suspect of any result with 10% of the "normal range
2. different labs have different ranges of "normal"
3. much of this is due to exteranal factors (such as a glass of wine, neupogen, etc.)
4. labs do make mistakes; see Jamie's post: http://www.her2support.org/forums/index.php?showtopic=22231
5. we should look for patterns in results
Knowing all that, I am starting to control my panic response, albeit just barely.
Al
Al, I have to agree with you and feel compelled to emphasize the importance of looking at the WHOLE bloodwork picture and charting, at least numbers important to YOU --whatever they might be--over time. A bare minimum is to keep them in a binder. As I have so much paperwork associated with my illness's longevity..sigh..., I recommend buying at least a 4" binder and at least 200 medium weight page protectors to start...then, as everything comes in, just slide the page in the sleeve and keep stuff in chronological order. You can get fancy, CT scans with scans...blood work with blood work, muga with muga...but the bottom line is with HER-2 disease, you must stay on top of YOUR own case and know what your numbers are and what your scans say and also what your pathology REPORT really means. Call a university if you have to and talk with someone who is an expert in whatever your case shows up.
That said, here are some things I look for when a person with her-2 sends me their blood work. Ideally, I like to see a CBC, general blood chemistries that include liver function--especially the GGT as it is nearly always elevated in her-2 cases, calcium and CO2 levels, kidney function, etc. I also LOVE to see CA 27/29 taken over time coupled with serum Her-2 marker results, if and when you can FORCE your oncs or your primary care people to give them to you. If a person has been on Herceptin for a while, it is not unual for the CA 125, usually associated with metastatic ovarian cancer, to elevate slightly say under 100...but Ovarian cancer and/or mets proper is not usually considered unless the CA 125 goes over 200, and then, it is not definite as CA 125 can be elevated in numerous circumstances, including pregnancy, the week just before or of your period, and any time there is infection in the digestive tract, especially the bowel. Sadly, I have also had a lot of experience (not in me, thank goodness), with the devastating CA-19-9, the marker best known for pancreatic cancer and the CEA, best known for colon and pancreatic cancer. However, the CA 19-9 can also be highly elevated even in the 1,000's when there is some sort of bile duct obstruction, but of course, cancer can cause obstructions so sometimes you are talking about one and the same.
On your CBC: Try to keep the White Blood Cells at about 6 or 6.5. If they are lower than that, you can raise them easily by putting between 15 and 45 drops of reishi mushroom (in mild alcohol tincture) under your tongue upon waking in the morning. This will give you other benefits too, not the least of which is keeping your WBC's high enough, even on chemo, to avoid neulastin or other WHITE BLOOD CELL rasing painful shots...smile.
If you are a woman, try to keep your RBC's between 4.5 and 4.75, if you can. If you have trouble, try drinking a few ounces of Welches purple grape juice daily, or eat adequate raisins, apricots (dried or fresh), liver, or lamb, spinach.
If your platelets fall low, this is an indication of magnesium deficit, especially the kind caused by MANY chemotherapies (carboplatin and cisplatin are known depleters of magnesium as that is in part how they work to kill the cancer) and this is at least one reason while on either of these drugs a person's platelet's can go so dangerously low. Not only is adequate magnesium required for more than 300 enzymatic reactions in your whole body, but every morsel of ATP energy that every cell of you needs, must have at least one molecule of magnesium to be created. Magnesium is also required to fire the synapses in your brain and it has been postulated that mostly what we call "chemo brain" is merely a temporary magnesium deficit, so try to keep your platelets around 310, if you can. Worst case, though, keep them above 250. If you have trouble with sticky platelets or have been told you are at grave risk for a blood clot, heart attack or stroke, have no fear...if you are NOT already on cumindun, try 500 mg of pure evening primrose oil daily, not more than that. Evening primrose is contra-indicated with cumidun as it could cause one to bleed out. Remember platelets are essential and do so much more that keep us from bleeding to death when we get a cut or scrape or an internal hemorraging nasty. If you have low platelets, please add enough PURE magnesium to either your diet or supplements to bring the number into balance. If you are her-2 positive, do not for any reason ingest FREE calcium as in a supplement or synthetic IRON...both of these have been shown to fuel the cancer process in general and be ESPECIALLY detrimental to her-2 patients. Don't be deceived like 90 per cent of America that calcium is good for your bones...go on the internet and type in calcium magnesium homeostasis and what you will learn is that the body only absorbs as much calcium as there is magnesium in the gut as it must maintain equal amounts in the blood stream to beat (calcium) and relax (magnesium) the heart. This calcium magnesium homeostasis is one of the oldest evolutionary conserved mechanisms that still exist today that may actually go back to the origins of life itself in the humble dolomite rock, composed of layers upon layers of just magnesium intertwined with calcium, lacking just enough stability, to create an energy spark, like an early proto type battery.
Anyway, Magnesium is IMPORTANT. If your platelets are high, say over 600, it may be an indication you are hitting the painkiller bottle a little too much..yeah, right., but this can be dangerous. Try acupuncture or acupressure or biofeedback to lessen pain and slowly wean yourself off the pain meds and see if your platelets normalize within a blood draw or two.
One of the SINGLE most important things to check for on your CBC is your lymph count. Try to keep your lymphs in the high 30's or low 40's. If you are on either chemo or even just Herceptin alone, this will NOT be easy to do, UNLESS, you use the tried, tested in hospitals and proven age old remedy of putting zinc on the feet...I know, folks, it sounds crazy, why would we want to put that yucky BABY BOTTOM paste on our poor dry cracking Xeloda ridden feet...well, in a nut shell (nuts have tons of zinc also by the way), it is for the zinc which is needed by the immune system to continue launching charge after charge against tumors and lesions NOW HIGHLIGHTED by the Herceptin sitting in all those HER-2 receptor like a skeleton key in a lock. Even if a cancer patient is very ill and can not get nutrients in via digestion, there are at least 4 things that can help that can be applied right on the skin. The zinc in the Desitin, Vitamin A and D in a cream you can also buy in the baby aisle, and the age old epsom salt soak (epsom salt is just magnesium sulfate), will put magnesium quickly back into even an almost completely mag depleted, chemo-wretched patient, provided you can get them into a head out total immersion bath safely. If you can not immerse them completely, you could always try a foot soak. Besides being therapeutic, it is also comforting and soothing. Even the Bible has encouraged us to wash one another's feet, althugh I am pretty sure, they did not add Epsom salt to the mix...smile. Also, for folks with severe liver mets who are near liver failure and have their abodomen's swollen from where the plasma is osmoting out of their blood vessels, the traditional hospital remedy for this actually used to be head out, total body immersion in PLAIN water. The patient will need to sit in the bath for at least 1 to 2 hours for at least 3 or 4 days...much safer and MORE effective than doing the abdomen tap and siphoning off the life-giving plasma.
Also, by using zinc to raise the lymphs, which you can watch happen in yourself if you are disciplined to put the desitin on the feet EVERY night till your lymphs hit the 40's...smile...yeah right, but it is possible, I work with folks every day who do these simple remedies and live quite active and fulfilled lives even with her-2, even with mets....
Next, on the CBC, you want to keep a very close eye on the Grans (sometimes called neutrophils). If these are high, or even on the high end of normal, you can, 9 times out of 10, also be certain that your cancer tumor markers are BAD news...as there is an inverse mathematical relationship between the lymphs and the grans, by keeping the lymphs high with the zinc, you can lower the grans automatically, thus, minimizing your chances of the markers going out of control...
I could go on and on...we will take up the more challenging chemistries another time but the most important ones to watch with her-2 are your calcium levels (keep it between 9.6 adn 9.8), your potassium levels, aim for 4.5, be wary of your alkaline phosphatase as it it by itself starts rising, you can be fairly certain you have active her-2 BONE mets SOME where, even if no scan is showing them...you can confirm your suspicions even more if you get your actual her-2 numbers. If they are high and your alk phos is steadyly heading up uP UP, you have problems..you need to pick a plan and go for it...best plan to try first, an extra dose or re-loading dose of herceptin alone will usually take care of it if caught early, before the number goes, say, beyond 300. It it has gone to say 500 or over 1,000, you are dealing with SERIOUS bone and probably liver mets as well. Get on a plan ASAP. Try to get and keep the alk phos around 60 or 70.
Ahhhh yes, no blood chemistry advice would be complete with a word from the liver enzymes...as mentioned elsewhere be ever watchful of your GGT and all the others. Also watch cholesterol levels and be warned that too much oleic acid intake may cause false positive high reading of your triglycerides..more next time. Be sure you have adequate kidney function. If you don't, try to take a chemo break, if at all possible and rest and take moderate fluids..not too much as you don't want to over burder the already exhausted renal system. You can usually note liver mets, even before you see them on the scans by sharp, and then steady increases in liver enzymes.
One last one, try to keep your CO 2 around 22...I know this seems low, but carbon dioxide has an inverse relationship between itself and oxygen in the blood, meaning high CO2, less oxgygen, your cells may become choked for air, high oxygen, less CO2. Exercise, especially walking can whip this number into shape, as can breathing and sound mediation exercises, if you are unable to walk. Also, anything you can do to improve lung function with or without mets can better the Co2 as well. Some evidence shows C0-Q 10 can improve breathing in general. Ok...nuff said, --Gina
Barbara
09-17-2005, 04:58 PM
Gina:
What about calicum/magnesium supplements? Chemo left me with osteopenia. Also Herceptin has caused my WBC to drop to 3.0 and has left me slightly anemic. RBC of 4.15 and Hemoglobin of 11.6. My platelets have been fine. My oncologist thinks I am one of the 2% of patients whose WBC are adversely affected by Herceptin.
Barb
*_Sandy H._*
09-17-2005, 05:08 PM
Gina: Do you mind telling us if you are a professional? You sound like you are a lab tech or do you just like to research? Your info is very interesting. hugs, Sandy
Gina, I'm curious too as i love your advice and have tried to tell people for years about the calcium thing-society is so hard to combat. But i have a question for you, if you can help. I had chem panels done for two years very regularly between dx's. When a scan revealed a 7x9 cm tumor in my liver in addition to many others, i had no symptoms and no flagged readings on my blood work. So i have always wondered why. Also, my alk phos. is 75 and has never been out of the normal range and my last scan showed a 1cm, low-density lesion on L3. My CA 27.29 seems to be reliable and very sensitive, the CEA does not. Just curous, if you have insight into any of that. Thanks for all of your advice and info sharing it makes such a difference to us. Also where do you get treated again?
love, joy
eileen
09-25-2005, 10:47 AM
Gina: how do i find out about my serum Her2 marker results? Are they given routinely as part of the CBC's or do you have to get tested separately for them? Would this have anything to do with elevated alk levels?
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