HELP for RBC count

I'm confused. At my lab, anything between 11.2 and 15.3 is in normal range. Why would her doctor want to use a drug to boost hemoglobin levels if she's in normal range? What is the range at your lab?

[dhealey]

Terri/Ruth, When I was on Taxol my HGB got as low as 7. They wanted to give me a transfussion which I refused. I got Anaresep every other week and still my counts were low. My Oncologist suggested taking Ferrous Sulfate 325 mg twice a day. This helped get my counts up to 9. They never were normal until a month after I finished my chemo. If your not feeling that fatiqued I would ask about the Ferrous Sulfate as an iron booster.
Debbie in North Carolina

[CLTann]

For red blood cell build-up, the Chinese medicine man suggested eating red bean (a cousin of mung bean), red dates and liver. You can cook red bean and dates together in water until the beans are very soft. Add a little brown sugar for taste. I would leave out the sugar myself. An herb, Tong Quai, is also helpful for RBC buildup, but I am not sure whether it contains any hormone. Check this point before you dive into this medicine. As to liver, you can cook anyway you want to, perhaps a combination with spinach is ideal.

I am glad you are taking Reishi, which is ganoderma in Japanese. Chinese name is Ling Tse. This is the miracle mushroom sought by emperors for curing various disease and build up health. I personally am taking the medicine in its powder form (very bitter). Many of my friends found it very effective in keeping cancer cells at bay. You can find many articles by Googling.

Best luck.

[CLTann]

After writing above, I remembered the obvious RBC enhancing diet that I forgot to mention. This is red meat. Of course, we are all aware of the advice of avoiding red meat for most people. Nevertheless, steak and chops are ready builders of RBC. In oriental market, you may even find coagulated animal blood (chicken or beef) in the fresh section. Actually, the taste is quite alright, with the texture much like tofu. Cook in a chicken broth with a few squares of the coagulated blood, throw some noodle in for a quick meal. It is not as gory as one may think. After all, we all eat rare steak which certainly contains animal blood.

[TSund]

I neglected to provide full info. Ruth is receiving 6 TCH; so two more to go. Another factor is that she is to have surgery 3 weeks after #6 (neo-adjuvant chemo). At any rate, Ruth decided to have the shot as the nurse in chemo held it in her hand and told her she wasn't aware of any side effects or studies (ugha) and if going low will just go lower. (tho I wonder if this always has to be true as we have beat the WBC odds so far). Ruth is MUCH more hesitant than I to question treatment and she was nervous about me making a stink. (plus we would have had to LEAVE chemo, go 3 floors up, interrupt doc or nurse, made a general pain of ourselves...

I HATE what happened today. If I have my way Ruth will NOT see onc w/o full info of the day at hand. Because we thought blood counts were going to be OK, we did not have the full conversation with onc about boosters, ramifications, minimum levels, justifications, etc. ONly informed by the nurse AFTER the appt that onc decided on aranesp based on today's blood work. (which took a bloody long time (no pun intended) to arrive - after the onc saw us unfortunately. Ruths rbc was at 11.3 and her hemocrit (sp?) at 34. Chemo nurse said most oncs treat at less than 11.5 or 36%.

While it may be the best thing given the upcoming surgery and two more treatments, I was so frustrated I wanted to scream. There are so many questions I would have asked if I had seen this coming. I id ask the onc's nurse about the study indicating not good for tumors, and she said "doesn't apply if rbc's already low" I question that statement, or at least the assumption, but I'm sure my credentials would be laughed at in the medical world....

At any rate, that's the stats. I'll keep you posted as to the outcome. It was so hard for me...I had to bite my tng just about through. Ruth knew I was upset and that is not good for her, so I finally had to just let go. (well, sort of....as is evident by my rant here)

The good news, Ruth's WBC was up again. They are fairly amazed at that one. IT's been recovering well ever since the reishi and astralagus regime. We were worried a week ago at 3.1 but it had doubled by today, and onc said even 3.1 was very good in the middle of chemo. I only wish there was something that proved as effective for the RBC.

Live and learn...

Terri

[AlaskaAngel]

Terri,

I admire your determination. It is hard to have all the "right" answers at the "right" time to make the "right" decisions. bc is one endless set of questions that are usually hard to see coming -- partly because even though we pay for the studies we get, we don't get to see the results right away and the docs and nurses DO, so they have the lead time that we don't get, to be a little quicker to evaluate and make decisions.

What is the communication level with her onc? I'd print out the Oncolink article (because Oncolink is so legit as a source), or one of the other articles posted about the issue, and take it to the onc as a starting point for discussion, prior to next treatment. I do think the nurses doing chemo do not seem to be aware of the issue and they certainly should be, as this is not just a rabble-raising but a very genuine consumer issue. They are the ones who really do need to see the information in behalf of their patients. A lot of people here have "been there" in feeling funny asserting knowledge in dealing with the "experts" and it just comes with the territory I'm afraid. The question is still under investigation as to what the reason is for the poorer outcomes with use of Aranesp, but the questions that are being raised are not imaginary in the least.

Oncolink's article:

http://www.oncolink.upenn.edu/resour...&ss=222&id=937

"While these results and recommendations are sure to spur future research and ongoing evaluation of the safety of these agents, what are clinicians and patients to do with the information we have? The FDA advises clinicians and patients to remember that ESAs are given to reduce the need for red blood cell transfusions and not to treat symptoms such as fatigue. The risks and benefits of ESAs must be weighed against the risks and benefits of blood transfusions in each individual case when deciding whether or not to use the agents. The use of evidenced based guidelines, such as those developed by the National Comprehensive Cancer Network may be helpful in guiding the decision to treat with ESAs. In those who choose to use ESAs, it is imperative that doses be adjusted to maintain a hemoglobin level that does not exceed 12-13g/dl. In addition, the cost of these agents is not insignificant to the patient or health care system and must be considered in the overall risk benefit analysis.

Patients and clinicians must understand that no data exists to support claims of improvement in quality of life or fatigue. The manufacturers of these agents frequently used direct consumer marketing to promote these unsupported claims, a fact that concerns many patient advocacy groups.

Studies have found a decrease in the use of ESAs by oncologists in the months since the negative study results were publicized."

[mke]

Those Popeye cartoons have a drop of truth in them.

I had two hospital stays and 4 transfusions due to low RBC while doing neoadjuvant chemo. To gear up for surgery I ate liver (fortunately I like fried liver and onions), spinach salads, kale, and some concoction recommended by a Chinese friend. That was quite tasty, it was a broth made from simmering beef bones, carrots, onions, those big white radishes, some herb (? something quai), and some bok choi at the end. We made a big pot of it and froze it in servings. I quite liked it.

Surgery was a breeze and my recovery was uneventful.

[TSund]

Thank-you all for your input and messages. This has me really shook at many levels, even more so the more I think about it. I am disappointed, worried, frustrated, and generally p'd off. I will have this conversation the next time with the onc. (Something else to fret about)

ON another note, I leave for Korea for two weeks tomorrow night (giving classes and playing concerts)I thank-you all for your input and I pray that #1) Ruth will be fine and that this will have no detrimental effects #2) I can let go enough to play some decent concerts and focus. I am sorry that I do not have time to answer those that were kind enough to answer individually. Please know that I am as always grateful.

Sincerely,

Terri

[Andrea Barnett Budin]

Terri,

I sense your frustration and your rage BIG TIME. It is great that you are on top of this and keeping yourself well-informed and proactive. But -- can you manage that without hyper-ventilating? I don't mean to be flip. Not at all! These are anxious times you're going through. We all know that too well! But your anxiety is surely felt by Ruth, which has to be alarming to her. She needs to be enveloped in a peaceful, positive atmosphere.

My spouse, Paul, was just like you. However, he asked questions couched in a calmness. Super informed and questioning left and right, and yet, with a soft, friendly, *team-like* involvement. The doc, Paul and I worked together. As a group effort. Putting our heads together. Not antagonistic, which I am picking up from you. I understand it is coming from a place of fear, which is quite natural. I am only suggesting you let up a little.

I have bee receiving Procrit, and Aranesp, over the last 9 yrs, as my HGB drops, as does my energy level (being on Herceptin, which I believe is keeping me alive and holding mets at bay). I get regular ECHOs and am holding my own. I USED to get the Procrit if I was under 12.4. Then time changed, and we switched to under 12. NOW, as insur co's won't pay the exorbitant price ($7,000 an injection today vs $800-$1200 for a long while). Medical facilities kept upping the price as many insur co's weren't covering enough. (Mine usually did.)

NEW Cancer Center rules -- you have to be under 11. At least for NON CHEMO PATIENTS, which is in actuality what I am. I was 11.3 and feeling like I was crawling. I know a few days after the injection I feel peppy again, thank God. QOL is a big factor. I was asking FOR the injection. No. You can't get it (because of above new rules). I pushed. They checked my chart. (My onc was out of town.) They found a notation that stated that IF NEEDED, I WAS TO GET 300 ARANESP. Still, they checked w/the pharmacist who recited the new rules. I asked them to call my insur co. I was calm on the outside, but outraged on the inside that I had to beg for assistance, per my personal experience. They sent someone to have someone in whatever dept (?accounting) call my insur co. They got through, discussed back and forth, as I waited, in the dark so to speak. Finally someone returned to say they apprvd a *half dosage*. I said good. They said ok. The half dosage was just as good (150) as the full dosage, in lifting my energy up to functioning, not a struggle to get dressed in the AM. I remained adamant, determined, gently aggressive and in control. I wanted to scream. I wanted to cry. I felt so frustrated. My husband was unsure if I should get the injection, fearful of the *studies*. Again, I was going on 9 yrs of *personal experience*. MY EF has been okay w/ea ECHO. *Others* this is not true. *I* felt like a wreak w/Taxotere, BUT it annihilated every one of my met liver tumors into nothingness, so I'm good with that. *Some* had not too bad a time w/Taxotere. Some can be 7 something (HGB) and walk pretty perkily. I can't. Every person, every *body*, every cancer (and all its infinitesimal fine points) is DIFFERENT. Cancer never read a book. There are no hard and fast rules. There are no simple answers. At every turn is yet another conundrum. Another exasperating issue to muddle through. Another surprise! Unforeseen matters abound. Disappointment is unavoidable. So -- Terri -- be prepared to remain on your toes, and to try as best you can to be aggressive and yet full of grace. It is possible. It will help YOU *not* make yourself sick over worrying and feeling frustrated and stressed out. And it will help Ruth HEAL and thrive in the best of atmospheres. Your love is apparent. Let that force work for you and for Ruth. I guess that's my point w/relating my experience above. Paul got everything done, with the docs, the nurses, the insur co's, without making himself crazy (and me too in the process). Occasionally, when I'd hear him on the phone in the other room (as I lay in stupor mid chemo) and I realized it was a half an hour and he kept repeating the same, SENSIBLE thing to the person with the sense of a penny on the other end of the phone, and then I heard him raise his voice -- which he doesn't do in such matters USUALLY, I would drag myself out of bed and go to his office across the hall. I'd see him turning red in the face, so enraged, uncommonly so, and *rightly* so. I'd say to him, PLEASE, PAUL, YOU'RE GOING TO MAKE YOURSELF SICK. I NEED YOU TO BE WELL. And he'd calm down. He'd see what was occurring. He *got* that he was spiraling out of control and he would excuse himself from the ongoing conversation. We learned that if he called the insur co right back, maybe waited five minutes, he'd get to speak to ANOTHER person. And, usually, THAT person immediately saw the problem he was calling about and rectified it. So if one route is blocked -- we learned to take another.

If you are forever p'd off, even if that is unspoken, it is a clear message being sent, I assure you. Wishing Ruth and YOU an easy time. Make your way through the process, the surgery, the treatments and the healing. Be a part of each step of the way, doing your best at every turn. I wish you well, as I wish all my Soul Sisters and each of their loved ones fighting for them, and going through this ordeal totally with them. I honor all!
Andi

[harrie]

My RBC dropped while on TCH. Managed all 6 rounds with maybe Procrit twice. After my 6th round, my RBC just came up on its own. I didn't think it was anything significant I had to worry about, just par for the course with my taxotere. The dropping of the WBC was more of a concern to me.
I am almost 3 months post my last round of chemo and I feel absolutely great.
Maryanne