Medical Update -- Xeloda vx. Taxotere.... and the winner is....

We arrived a few minutes late... and there were no parking spaces... so we parked right in front of the hospital, in the spaces reserved for taxicabs. Who says there are no advantages to having cancer? With a tav neichut (handicapped parking permit) you can park almost anywhere!

We went in, paid and sat down to wait...

When my Second Opinion Oncologist (SOO) came out of her room, she was surprised to see us.

"I did not expect to see you;" she said softly.

When we said down in her office, she continued, "You did not need to come. I sent you an email..."

I explained that we, particularly Moshe, had more questions for her.

She repeated what we have heard before, both from my regular oncologist and others as well: there is no 'right or wrong' answer. Even though Taxotere is an excellent, and effective, chemotherapy, she does not like it so much because of its toxicity. She prefers Xeloda, which has much fewer side effects. That said, she understands why my oncologist recommended Taxotere, and agrees that it makes sense to try it.

She did suggest that if we do choose Taxotere, a full dose should be administered once every three weeks. My oncologist recommended that I receive the Taxotere weekly (1/3 of a dose per week), like I received the Taxol. Spread out, the side effects are less severe. My SOO ceded that the difference in efficacy was not that significant.

(She quoted a study that compared Taxol weekly, Taxol once every 3 weeks, Taxotere weekly, and Taxotere once every 3 weeks. She said that Taxol weekly was the most effective, followed by Taxotere once every 3 weeks.)

When our meeting ended, the SOO told us "there is no reason for you to come to me again; you have an excellent oncologist."

Then, almost as an afterthought, she added, "except, perhaps, after Tykerb. There are several new drugs that are coming out for HER2 cancers."

She suggested that when the time comes, her hospital might be involved in research that will be relevant to me.

As we left, she repeated that we can email her with questions and that we can rely on the judgement of my oncologist. Then, again, softly, she wondered that we had come.

I wondered if I had missed some sort of subtle message when we spoke on the phone. I do not think so. I just think she thought it unnecessary, and thought that was clear. I think she was being sensitive to the fact that it costs so much money to sit with her.

Nonetheless, as we walked out, Moshe expressed his relief at having gotten our SOO's opinion. He noted that had we not gone, he would have spent his nights, laying awake in bed, wondering if we had made a mistake about my treatment. When you look at it that way, we did not waste our time or money. It was worth it for his peace of mind.

And, just so we would take full advantage of being in Tel Aviv, we went out to China Li, a nice Chinese restaurant in Tel Aviv.



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

Medical Update -- Xeloda vs. Taxotere

I tried to bypass the trip to Tel Aviv.

I emailed the oncologist and received an answer from her. She recommends Xeloda and Herceptin.

Because Moshe wanted an uninfluenced opinion, I sent her the minimal amount of information necessary to form an independent opinion. But now I had more specific questions.

I emailed her again, but did not receive an answer. So I called her with several follow up questions.

She was in the middle of seeing patients, so she was not available for a lengthy discussion. I managed to ask about Taxotere, and she repeated her recommendation to switch to Xeloda.

I wanted to ask her more questions, but she did not have the time or the patience. I asked if there was another time that I could call her. She was noncommital.

That is the only thing that I do not like about this doctor. The only way to consult with her is to come in person. It seems to me that we should be able to have a short phone consultation for relatively simple questions or, at least, a short correspondence via email.

It is clear that the only way we are going to receive satisfactory answers to all our (read: Moshe's) questions is to go in for a consult.

Moshe really wants to do this. I really do not want to. This is so ironic. I am going for him, and he is going for me.

Either way, we are both going to Tel Aviv tonight.

All I want to do is sleep. I forced myself to stay awake to call the oncologist when the secretaries said to call. (Then I had to argue with the secretary until she put me through, and then the doctor did not even really have time to talk with me!)

Now I can't sleep because I have to get ready to go see the doctor, because she did not have time to answer my questions over the phone, and she would not commit to talking with me later.

Oh, yeah, and did I mention that we had an appointment for 8:30 pm, but they moved us up to 7:30, which is NOT a good time for us?!?! (I hope I can sleep in the car!)

I am really trying to stay focussed on how important this is to Moshe.

I wish my two doctors would just talk directly with each other.

I am really inclined to take the Taxotere, for all the reasons I wrote in my previous post.

Moshe asked that I do not decide anything until I speak with the other oncologist. I am trying, but it is difficult.

Now, in addition to not wanting to spend the time or money getting this second opinion, I am worried that it will cause even more strife if Moshe and I do not agree on the next course of treatment.

...as if I did not already have enough stress in my life!

I HATE having cancer!



Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

You Wanted to Know.... (Perpetual Patholoy)

So, Monday night, my friend calls and says: my father and his sister are friends with this super amazing pathologist. My aunt (who is also amazing) is here visiting. Get me your medical records by Wednesday, when I'm taking my aunt to the airport. She will bring them to the pathologist. Call my father, he will tell you what to get.

Wow!

So, I drop Tuesday's plans to take the car to the shop (which, only moments before, had seemed like the logical activity for my "day off"), and I start making calls.

I know that getting everything is going to be challenging. When I called my friend's father, he told me that I needed to get slides and a parafin block. "Don't take no for an answer," he instructed.

Great.

So, first I had to argue with the Sha'are Zedek (SZ) pathology secretary, who says, regarding the parafin block: "we don't give that out." Then I had to argue with the Maccabi Lab secretary, who first says "we can't give that out," then adds, "you need to have a note from a doctor."

Thank God, at least I had slides already, from when I went to the US for my mastectomy/reconstruction. Of course, the slides aren't labelled well, so it's impossible to know which slides are from the biopsy, the lumpectomy, or the mastectomy....

Well, after I insisted that the material in the parafin block actually belong to ME (since it comes from MY body), the not-so-helpful SZ secretary conferred with the pathologist, who informed her that I actually could take the parafin block, if I leave a deposit (of 221 NIS -- you gotta wonder what that one shekel is for....). Oh, and please call back later to make sure that it will ready in time....

Then, the friendly-and-helpful Maccabi Lab secretary suggested I just get my GP to write the letter. If I have a letter, she explained, then I won't have to pay; though I still have to leave a deposit (of 1,000 NIS!!). Oh, and it will take three days. ACKKK -- I need it by tomorrow morning! OK, have the GP write "dachuf" (urgent), and I will see what I can do.

In the afternoon, I call SZ back. The secretary (not the same one) doesn't know what I'm talking about. "Please call again, in the morning". Then I call back Maccabi; the secretary is trying to help , but still can't make any promises. "Please call back in the morning."

Meanwhile, Moshe is trying to get all the paperwork and CTs on a DVD. But the scanner is not working...

I call my friend. She is leaving for the airport at 9:00 pm. Call our mutual friend, she directs, "He can bring the stuff when he comes home from work. I'm sure he'll be home by then." (Like my husband, mutual friend works in computers; I am not nearly as certain that he will get home early enough...)

I call mutual friend. He's usually home by then, but can't guarantee it. (I hear his wife say something quietly in the background.) He continues, "I'll do what I can."

I call my friend in Rehovot. Can you pick up the stuff from the lab tomorrow? She can. But how to get it to Jerusalem?

Make some calls.... Try some leads.... Nothing.

It is too late to make more calls.

I start composing a letter to the amazing pathologist.

I am too tired to finish it.

Go to sleep.

Wake up.

Start again.

Call SZ: "we have it ready for you; the lab closes at 3:00."

Call Maccabi: "it will be ready soon; the lab closes at 5:00."

Leads went nowhere. Post to blog. Post to various lists.

Get call from school at 11:20. School is ending at noon, because of President Bush's visit to Israel.

Stop everything. A had made plans to go to her friend's home after school. I promised to pick up the kids, if the school buses cancelled pick-up, like they did during Bush's last visit. I call the mother of A's friend. No answer. I call the father -- he says someone will be home at that time and the buses should be fine; that's why the school is ending early -- the roads are closing at 1:00. He'll call back if there is a problem.

Wait! Roads will be closed at 1:00! Drop everything. Take friend, who had come over to help me tidy up my house, and head off to SZ to pick up parafin block. At least I had good company for the ride....

Zip to SZ. Find pathology department in the deep, "down-below" of SZ. Get package.

Zip to deliver package to mutual friend. Mutual friend hands me a large, potted Aloe Vera plant, a gift from his wife and her mother. (THANKS!!) Then a cab pulls up with another mutual friend! Bizarre!! I invite cab friend to come for dinner on Shabbat; I tell him we are having guestst that he would enjoy meeting. "How do you know that I don't already know them?" he asks. As I'm getting in my car, I call out their name. "Yup, I know them," he says with a smile, "we'll be in touch." Small world!! But, no time for chit-chat. Close door and...

Zip back to our side of town.

Get back just in time to drop friend off to pick up her kids and for me to arrive at OT, at my appointed hour... on the dot!

Then, home and back to work!

Driving home. Moshe calls. He is also on his way home. He's driving right behind me. He is picking up an old scanner, that we never got around to hooking up. He's hoping to use that to finish scanning the material. Good luck.

At home: No response to any of my requests. My Rehovot friend checks with he neighbor, who owns a cab company. It will be 220 NIS to send the material by cab. OK, at least we have an option.

Moshe is worried. Even if he could set up the scanner right away, it was already doubtful that he could finish scanning all the material. We discussed some options (there weren't many) and our priorities. He would at least make sure to scan in the CTs. He left. Back to the office.

I still needed to find a way to get the materials from Rehovot!

Out of desperation, I called a friend who used to drive all over for his job. He started a new job, but maybe he still drives all over... He doesn't. But his office is in Lod (and there is a branch in Rehovot). "Why didn't you call me yesterday?" he asks, "I was working in Rehovot and could have brought the package to you in the evening." Little did we know! We tried to figure out how he could help. We couldn't come up with a feasable solution. Then... walla! (voila) After work, he would drive the 20 km to Rehovot to pick up the package, then he would drive back to Lod, to the airport, and deliver the package to my friend, at the airport!

A solution!!

OK, now to finish the letter for the pathologist, explaining what I'm sending him and giving him a brief overview of my medical history. (all this on one page!)

Oh, no!! I forgot about picking up A, who was no longer at her friend's home, but rather at the birthday party of a boy from her class, at the Traffic Safety Institute.

Time was running out!

I called the mother of another school friend, who lives closer to where we live. She's not picking up; her daughter didn't attend the party. I called another mom -- same thing. I called another mom -- same thing. Finally, I called the father of (horrors!) one of the boys -- same thing. I called another mother, who I don't know as well, but I was getting desperate! She agreed to bring A to her home. OK, at least her home is only a few minutes from my home.

I have less than half an hour to finish the letter to the pathologist.

I am desperately trying to compile a clear and consice document. I am running out of time. My brain is fried. I am struggling to focus. It is almost done.

My daughter calls. The mother is bringing her all the way home. THANK GOD!! I want to thank the mother, but I don't have time. A thanks her for me, as I hang up the phone.

Finish the letter. Review the letter. Make some alterations. Check again for clarity. Hope I did not leave anything out. Email the letter for Moshe to print. He puts the letter with everything he has compiled (DVD plus photocopies of the material that never got scanned). Then off to our mutual friend...

Time's up.

What's done is done.

I am beat!


Please daven (or send happy, healing thoughts) for RivkA bat Teirtzel.


With love and optimism,
RivkA