Update on Mom

[Tom]

Hi everyone. I posted this as new so that you would not miss it. When I got home from the hospital, my computer crashed permanently, so I am writing from a neighbor's house. Great timing, heh? The poor neighbor had to sit here watching me sob uncontrollably as I read all of your letters. I wanted to regain my composure enough to respond and let you know what is going on, and thank you all for your help and kind words.

Let me first send out my prayers to Al and Linda. I see that they are really going through the wringer right now. I am thinking about you.

As far as Mom goes, I kind of lost it on the onc, and reminded him that one of his fellow physicians (Mom's surgeon) put her in the spot she is in now because of a failure to properly explore and stage her cancer regarding lymph node biopsy. This mess was completely controllable at that point in time, but the opportunity was sqandered through arrogance. That seemed to strike a note with him. He proceded to order a pelvis, chest, and abdomen CT, which I will be having done around noon today. I also requested a bone scan, and plain films of the hips.

I questioned the PET results because of the failure of any tumor marker increase. I am meeting with another onc on Monday, and we will review the results of all of today's tests, and go from there. I got my second wind after reading al;l of your wonderful responses. I was just shell-shocked yesterday when I got the bad news AND watched them pull Mom's Herceptin at the same time. I know it is a FINANCIAL decision, as I saw it in his eyes. He didn't have the "stuff in his pants" to be honest with me.

I will contact Glaxo Smith Kline as to compassionate use of lapatinib, as I met one of their employees last year while he was receiving radiation therapy for nasopharyngeal cancer. He was a wonderful person to talk with. I will also do my research on what "mild" chemo options you have all mentioned, and appraoch the onc with them on Monday.

Someone asked about ER status. Mom was ER-, PR-, HER+++
She began Herceptin in Juky of last year. Ironically, it seems that the 9 month time to progression is accurate after all. God this all makes me crazy. I swear I will spend the rest of my life trying to convince those in charge of this world to stop all the bull****, and find the cure for this crap. I am sick to death of what it does to patients and their loved ones.

RB, thanks for your post. I have already increased Mom's EPA/DHA many fold. Someone else mentioned Co-Q. I was giving her 100 MG 3X daily, but will up it another 100 MG.

I can't remember what all of the posts said, but I want to than k all of you again from the bottom of my heart for your thoughts and advice. I feel re-energized after reading them all, and will fight this with all that I have left. I will try to check in as often as I can get access to a computer. God Bless you all.
Sincerely,
Tom

[Lolly]

Dear Tom; it sounds like you're rallying. That's good, your mom needs your fighting spirit to advocate for her. Good news that her onc is listening to you now. I'll be really interested to see what the new onc says.

A word of caution on the CoQ-10; if your mom does start chemo, some are of the opinion that high doses of anti-oxidants can actually be counterproductive when on certain chemos. It depends on the mechanism of action of a given chemo; some work by creating free radicals, and anti-oxidants of course counteract free radical damage, so weigh this aspect carefully. When I'm on chemo/Herceptin, I cut my CoQ-10 dose to 100mg a day, which I think is enough to maintain my heart. Then when off chemo I work on improving heart health with 200-300 mg daily. This strategy seems to work for me, as I hover in the "low normal" range.
Again, just a note to advise caution with antioxidants if chemo is an option.
Thinking of you both, and keeping you in my thoughts and prayers.

<3 Lolly

[StephN]

You have every right to be PISSED at that med onc who threw in your Mom's towel in such a cavalier way. To me that was the highest and most unfeeling insult. Not to look at the situation with any more than a STOP sign for your Mom's treatment. What Hippocratic oath?

I am very glad to see that you have had the chance to get a little sleep as well as a little satisfaction that there will be more tests to check the results of the PET scan. Too bad you can not get a PET/CT fusion scan.

Your poor Mom is obviously aware that something is amiss even though she is not understanding everything. People in stages of senility still have some feelings and know when the "atmosphere" changes. I hope these next docs will be truly gentle with her.

I read your other post late last night but wanted to see what today would bring for you. Like another post, I had the suspicion that the PET could be bright for other reasons.
After what happened to me this year, I will be the FIRST person to question a PET. Maybe you don't recall, but my brain PET this Jan. was very bright and all the specialist docs on my treatment team were just sure that the tumor was regrowing. NOT! Another case of radiation necrosis that was bleeding on itself. But there is not presently another good way to tell the difference.

I would even go so far as having one of Mom's spots biopsied before letting them take her off the Herceptin. Stick to that onc like glue until he writes the order. Stay in his face. Medicare be dam***.

What a way to treat someone who has made a monumental effort to take care of his Mom. I am glad you fought back and let him know how you felt.

[Lani]

http://theoncologist.alphamedpress.o.../full/11/4/325

[AlaskaAngel]

Steph said it all. If anyone can make a difference for your mom, you will. I am sorry that all things seem to be happening at once for you to cope with, and I am glad that this place and people are here for you and your mom.

AlaskaAngel

[Lani]

1: Drugs Aging. 2005;22(9):785-91. Related Articles, Links

Effect of creatinine clearance on patterns of toxicity in older patients receiving adjuvant chemotherapy for breast cancer.

Hurria A, Hurria A, Brogan K, Panageas KS, Pearce C, Norton L, Jakubowski A, Howard J, Hudis C.

Memorial Sloan-Kettering Cancer Center, New York, NY 10021, USA. hurriaa@mskcc.org

OBJECTIVE: A number of age-related physiological changes contribute to an increased risk of toxicity of cancer chemotherapy in the elderly. One of the most important of these changes is the progressive decline in renal function with aging. We sought to determine the association between calculated creatinine clearance (CL(CR)) and grade 3 or 4 toxicities during adjuvant chemotherapy in women > or =65 years of age with breast cancer. DESIGN AND METHODS: We identified 1405 patients > or =65 years of age who had been treated for primary invasive breast cancer at Memorial Sloan-Kettering Cancer Center between January 1998 and December 2000. Patients were included in this analysis if they had stage I-III breast cancer and had received adjuvant chemotherapy. Patients were excluded if they had a prior history of breast cancer or chemotherapy, or had no baseline creatinine value available for review. RESULTS: The 126 patients who met our criteria had received either cyclophosphamide, methotrexate and fluorouracil (CMF) [n = 65, mean age 71, range 65-78] or an anthracycline-based regimen (n = 61, mean age 69, range 65-79). The majority of patients (97%) had a normal creatinine. CL(CR), as calculated by the Cockcroft-Gault and Jeliffe formulas, decreased with increasing age (increased age associated with decreased Cockcroft-Gault [p = 0.02]; increased age associated with decreased Jeliffe [p < 0.01]). In multivariate analysis, after controlling for age and co-morbidity, a CL(CR) <50 mL/min by the Cockcroft-Gault formula was associated with an increased risk of fever and neutropenia (odds ratio [OR] 3.60; 95% CI 1.00, 12.94; p = 0.05) and a CL(CR) <50 mL/min by the Jeliffe formula was associated with a trend towards an increased risk of fever and neutropenia (OR 3.30; 95% CI 0.91, 12.33; p = 0.07), grade 3 or 4 haematological toxicity (OR 2.43; 95% CI 0.90, 6.55; p = 0.08), and need for erythropoietin (OR 4.15; 95% CI 0.81, 2.99; p = 0.09). An increase in creatinine (as a continuous variable) was associated with a trend towards an increased risk of grade 3 or 4 haematological toxicity (OR 5.81; 95% CI 0.96, 35.33; p = 0.06). CONCLUSIONS: In this cohort of older breast cancer patients, a decreased CL(CR) and increased creatinine was associated with an increased risk of fever and neutropenia or haematological toxicity. CL(CR) should be considered when determining chemotherapy dosage in the elderly.

PMID: 16156682 [PubMed - indexed for MEDLINE]

The dosages of all other drugs are adjusted for renal function--why they even have to make the statement in the last sentence is beyond me!

I post this Tom so you can stay on top of it!

[Tom]

Hi everyone. I still have no computer, so I am sitting in the back of our van outside a friend's house, working from his wireless laptop. I think the neighbors think I am a private investigator on a surveillance. I expect the local police to show up at any moment.


First, let me thank Lani fo her fascinating post on capcetibine. Oddly enough, I asked the oncology nurse about Xeloda the other day, and she immediately said, "Oh Mom couldn't handle that. You'd have a terrible time handling her with diarrhea". Geez, I appreciate their concern for me, but I'd rather they think of Mom's well-being before mine. I don't care how many times I have to change her if she is still breathing. I welcome the privilege.


There has been a bizarre twist in Mom's saga. I am being careful not to get my hopes up too much with it, but I am clinging to all lifelines at this point. During another confernce with the one onc, I asked why the PET results seemed to show metastases in areas that you would not expect to see them (colon, bladder, etc.), and nothing in areas where you would. He had no explanation, but still insisted on stopping the Herceptin, saying the disease had clearly progressed.


I asked if the areas that lit up on the PET, which he determined to represent a low tumor load overall, would explain her constant low-grade fever and soaking night sweats. He said that they would not cause such nigh sweats. I then told him that one of the things I worried about when she began the night sweats, was pneumonia or even TB, perhaps acquired during our dozens of trips into hopsital settings. He said that the chest film I had requested a few weeks earlier, showed no pulmonary infiltrates.


I then insisted on a PPD (purified protein derivative) test, to see if she had been exposed to TB. He agreed, but said that even if she did have TB, it would not light up on a PET. I was disappointed to hear that, but still wanted to know if she might have it. The test is scheduled for Monday morning after her bone scan, but will take 48 hours to "cook" and be available for the other onc to read on our Wednesday visit.

Now for the bizarre twist. I went to the local library wher Mom was librarian for 35 years, and went online. I searched for information on "False Positive PET Results". I was stunned! TB, in many of it's manifestaions, including extra-pulmonary TB, and something called Tubercular lymphadenitis, DOES IN FACT light up on PET. As a matter of fact, PET is used to diagnose and follow treament of TB. Do you believe it? This, after being told for certain that TB does not show on PET. And of course, the radiologist interpreting the PET result is focused on a history of an aggressive breast cancer, not anything like TB.


Grant it, it's not much to cling to, but I will grab any rope hanging in the water, even if it's a fishing line with a sharp hook. There is a remote possibility that what they are seeing is extra-pulmonary TB. I was never aware that TB cold be found in the colon, bladder, spine, lymph system, and other places. If we are lucky enough that TB is the culprit, Mom, me, and even the pets will have to be treated. That should be interesting. People are worried about me not being able to have friends over. Ha, most of my friends stopped coming to visit long ago. They are "uncomfortable" around seriously ill people. They should take a good hard look at what might be down the road a few years for most of us.

Anyway, the plan is to hope it is TB and get the testing done. If it still turns out to be metastatic disease, I will deal with it somehow. I am looking favorbly at the Xeloda, as many of you have mentioned, and will ask about possibly doing Xeloda AND Herceptin, even if I have to tie the onc up and make him an offer he can't refuse. I am still going to try and get her the lapatinib (Tykerb) somehow. That should prove to be an interesting battle.


And so, on this bright and sunny Easter morning, as I try to imagine what it must have been like two thousand years ago for those who found that stone rolled away, and Christ absent from his tomb, I have found my own little ray of divine hope shining warmly on my skin. I wish all of your a wonderful, and hopefully joyful Easter, and thank you for all of your prayers and ideas. You have all been so kind to me, and Mom even if she has no idea. I will keep you posted as often as possible. I bought a new operating system for my computer last night, and hope to be up and running from my bedroom again soon, rather than from the back of van. Thank you all again, from the bottom of my heart.


Sincerely,
Tom

[Sheila]

Tom
I am hoping there is an explanation on the PET, and that at least you can get "Mom" on the Xeloda, Herceptin and Lapatinib....any combo with the Herceptin should make a huge improvement....wishing you and your Mom many rays of hope this Easter Sunday.