Archive for the 'chemo' Category

19
Aug
10

who’s telling whom what?

We went in to see Dr. Medici today expecting to tell him that I was quitting chemo; instead, he surprised us by saying that another chemo would probably do more harm than good. I’d figured on having to convince him, and he thought he’d have to convince me.  So, no chemo for me.

Also I had fluid build-up in my abdomen again (ascites, pronounced ah-sigh-tees) & had 3.5 litres drawn off (when I was in the hospital, they only got 2.1 litres).

All for now,

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06
Jun
10

Oh yeah . . .

Did I leave off baldness?

I can’t believe I forgot baldness.

And dried-out mucous membranes.

And fingernails that look like something off Frankenstein’s monster.

06
Jun
10

Side Effects for your Delectation

I made up a quick off the tip of my fingers list of side effects that I’m currently suffering. This is to present to Dr. Medici when I ask him exactly what he means when he says chemo shouldn’t affect every day life. Again, this was just the list I came up with after 10 minutes thought:

Side-effects with Abraxane, Avastin, Neupogen, Neulasta

1. Muscle-and-joint pain (A, A)

a. Controlled using Oxycodone1/2 pill ~ 4 hours/day, Morphine Sulfate 1/2 – 1 pill ~ 4 hours/night. Replaces fatigue/inability to focus mentally with drug generated instead of chemo generated (or exacerbates it, possibly). Can’t drive.

2. Fatigue

a. Trying to get up and walk around the house periodically, carry weights, do some stretching
b. Mostly napping

3. Inability to focus mentally

a. Can’t drive
b. Can’t read, knit, quilt, bead

4. Peripheral Neuropathy, fingers, large toes, lips, tongue

a. Using L-Glutamine to control it, marginally successful
b. Can’t knit, quilt, bead, turn pages in books
c. Concerned about driving

5. Bone pain (N, N)

a. See 1a
6. Liver pain, occasional pains elsewhere in abdomen, that appear to be unrelated to intestinal pains

a. See 1a

7. Mouth sores

a. Can’t brush teeth using anything but finger and Biotene

8. Sense of taste corrupted – everything tastes like sh*#

9. Insomnia at night

a. Using Ativan, currently using 1 or 2 pills ~ 4 hours

10. Constipation

11. Rash on hands and now arms

a. Burns if water warmer that lukewarm
b. Feel scraped if I accidentally rub them against something
c. Otherwise, mostly just red and ugly

12. Runny nose

13. Bloody nose (Avastin)

14. Drooling at night when laying in bed

a. No problem if I sleep in recliner, otherwise causing skin problems on face.
b. Causes sore throat from breathing with my mouth open
c. Related to Periph. Neurop, mouth sores?

15. Nausea
a. Fairly mild
b. Controlled by Compazine

16. other

18
May
10

Three Scans for the Price of . . . Three

But first, results from last week’s scan!

Good news all around – the largest tumor has shrunk from 9.4cm down to 7.9cm; several of the other tumors also have shrunk; and some that haven’t shrunk outside are becoming necrotic inside, which probably means that the Avastin is preventing the blood flow leading to them.

So, yay!

As well, at 2 months, what they’re really looking for is to make sure that the tumors aren’t still growing, but often what you see at that point is that they’re stable, neither growth or reduction. The shrinkage, therefore is actually very good news.

So, double-yay!

My spleen is slightly enlarged, which isn’t of concern yet – Doctor Medici says there are blood vessels leading from the liver to the spleen (I think this is how it went, chemo brain is to blame if I’m saying wrong, not Doctor M), and they can get a little congested. At any rate, it is possible that it is lowering my red blood count, and may in the future have an impact on whether I can continue with this chemo regimen; but for now we want to go with it for as long as my body will tolerate it, since it’s having such good effect.

I also have some pleural effusion in my left chest cavity – a build-up of fluid in the space between the lungs and the chest wall. I believe this accounts for the chest symptoms I’ve been having, and also for the anxiety attacks, which I’ve been having a bit more often. Dr. M. doesn’t believe that, but I do – I know my body, and I’ve associated the anxiety with the feelings of pressure or compression in my chest, and the feeling that I can’t breathe as deeply as I want; and that was before I knew there was something in there.

However, the thing that most concerned Doctor Medici was the swelling on my left hand from last week. He was concerned that there might be hidden heart damage or a blood clot in my arm that was causing edema, and so he wanted me to have a vascular ultrasound and an echocardiogram in the next couple days.

I went in to the infusion suite and had my chemo, and when I came out, Nurse K. had scheduled me for the ultrasound at 3 pm and the echoCG at 4 pm. Fortunately, our savior driver cousin Jeanette was able to stick around and take me back to the hospital, and even had some personal business there herself, so that all worked out.

The ultrasound was given by a student, and one of the staff doctor/technicians was there to walk her through it. I was hearing comments like “Where is this thingy?”, “Show me that thingy,” “Show me that thingy in color.” I was seriously wiped out from the chemo, and all I wanted to do as I’m lying there was sleep – surprisingly, I ended up feeling pretty rested after that, so maybe my steroid high was kicking in.

They ended up taking a close look at the port and its environs, and the doctor/technician asked me a lot of questions about it. They ran over into my other appointment by about 10 minutes, and were looking intently at the results of the scan when I came out of the room. I had to wait a few minutes for the next test, even though I was late; and while I’m in having the echocardiogram, the ultrasound doctor stuck his head in the door and said:

“I just got off the phone with Doctor Medici, and he wants her to have a CT scan this evening – we’re getting it scheduled now.”

I called Jeanette to let her know that she shouldn’t wait any more, but didn’t get hold of her, which I figured meant she was out in the waiting room. We finished the eCG, and while I was changing the eCG doctor went out to talk to the other doctor. When he returned he said that the CT scan was scheduled, and I should just head right over there. When I got to the lobby, sure enough there was poor Jeanette, waiting patiently – I really appreciate the fact that she took so much time out of her life to drive me around, and to wait so long, but I didn’t know how much longer it was going to be, and figured she needed to get home to her family. After she left I called Brian to fill him in, and have him pick me up after the CT scan.

Once I was over in the radiology department, I got in pretty quickly. Nurse S. asked me why I was there, and I had to confess that I didn’t really know. All I could do was speculate that the ultrasound had detected a possible problem in my left chest/arm area, but nobody had told me what was specifically being looked for (and yes, I did ask the eCG doctor, who was the only one there by the time I was done with that test, but he didn’t know anything about it, just that the scan had been scheduled and where I was supposed to go). So he (Nurse S.) went to talk to the CT doctor, and it turned out that they were scanning the left chest and arm to look for venous clots, as I had guessed. I was still confused with why they needed a new scan, since I’d just had one on Thursday last week, and it was after the swelling symptoms had been and gone; until Nurse S. reminded me that normal chest CT scans are done with both arms above the head, so the arm is not imaged. Ah, of course.

Brian was waiting for me as soon as I was done, and we came home and made dinner, and were hanging a couple new pieces of artwork on the wall when the phone rang.

Dr. Medici was calling to let me know that the ultrasound doctor had detected some apparent slowing of bloodflow into the arms, which seemed as if it was coming from the middle of the chest; this is why Dr. M. requested the CT. The CT however, didn’t detect any clots or other problems, so unless the eCG results come back with something odd, everything seems as it should.

So that is the story of my big medical day, and My Three Scans.

15
May
10

Rash Actions

A day or so after my last chemo treatment (May 4 or 5), I developed a rash on the back of both hands. This happened once before, I thought with the adriamyacin treatment, but since abraxane is essentially the same as the taxol, it probably was with the taxol.

Exactly the same as the previous time, it starts at the base of the thumb, and runs towards the wrist for up to an inch-and-a-half; follows the web of the thumb to the base of the ring finger, where it covers the knuckle; and spreads a little bit up the ring finger, a little towards the knuckle of the middle finger, and maybe even up the middle finger a little bit. It starts out bright red, with extremely shallow bumps that taper out as they get further away from the web towards the center of the back of the hand. It is not itchy, and only mildly painful topically; but it is extremely sensitive to water temperature, more than lukewarm being very painful.

This week it was clearing up after using Aveeno hand lotion regularly, and periodically soaking it in a paste made of Aveeno oatmeal bath soak.

Tuesday and Wednesday were beautiful days, sunny and warm, so I went out into the back yard and lay in my lounge chair in the spotty shade provided by the elm. It was a little cool in the shade, but you’re not supposed to have sustained sun exposure while on abraxane, so I snuggled under the quilt that Evelyn made for me (really, I’m going to post pictures, just having some minor logistic difficulties). I’m pretty sure that my hands were mostly under the quilt both days.

I noticed on Tuesday evening that my hands were swelling a little bit – I didn’t think too much of it, as minor fluid retention is one of the expected side-effects.

Wednesday morning, not only was my left hand quite swollen, but my ring finger was extremely swollen. Before going to my support group meeting, I showed Brian what was going on, and we decided the ring had to come off. We tried soap, lotion, oil, and icing to reduce the swelling, but that puppy was going nowhere. While I was at the meeting, he called our PCP to ask if they knew of any special techniques. When I returned home we tried her suggestion, which involves running a piece of string under the ring, then winding it around the finger. By pulling on the string as you try to pull the ring off, it should get the ring past the swollen spot. In my case, the finger was just too swollen, and although we could see some progress, it was incredibly painful.

At that point, I was getting seriously concerned about triggering lymphedema in the arm (swelling due to the lymph fluid not being able to get out of the arm – typically, when only the sentinel nodes for the breast have been removed (such as mine were), it’s not a high-risk concern, but the additional surgeries and the radiation increased my risk somewhat). I also started having a minor panic reaction at the feeling of claustrophobia of having something so tight on my finger.

So I made the painful decision that the ring needed to be cut off. We called a local jeweler who told us over the phone “Sure, we can do that”, but when we got there, fobbed us off with the excuse that their cutter was out for repair (actually, one person said it *needed* to be sent out for repair, another said it was, and we think they were both full of it). When I asked if they could help us find a jeweler who could cut it off they didn’t even bother to say “sorry” before they said “NO”. So we drove over to the mall and at the first store we found, they were very nice and concerned, and cut it off in less than a minute.

I asked to have it soldered together on a temporary basis, so that I can wear it on a chain – since the rash is a known side-effect of the abraxane, I don’t want to take any chances on having it re-sized and then discover that I have to have it cut off again.

The swelling is mostly gone now, although it took a couple days to show much result.

We pick up the ring tonight, and I’ll be very glad to have it back – until now, the only time I haven’t worn it since we were married was when I was having surgeries, and then it’s been on a chain around Brian’s neck.

14
May
10

My Least Favorite Rollercoaster

Well, one of the topics we discussed with Dr. Medici on Monday was progress scans on the chemo regimen. He said that it had been nearly 8 weeks, and since we were rescheduling the chemo, why not do them this week?

I was floored, as I understood that scans happened every 3 months – Brian was under that impression also, but he said he remembered hearing 2 months originally, but then everything he heard after that was 3 months.

Apparently we were so shell-shocked in the first meeting with Dr. Medici, just finding out that the tumors were indeed cancer, that what we missed/got confused about is that with a new chemo regimen scans are performed at 2 months, and then each succeeding 3 months as long as you’re on that regimen. And once you switch to a different chemo regimen, you have a scan at 2 months, then each succeeding 3 months. The tricky part is if the 2-month scan shows that the disease is progressing, you get switched to a new regimen, so you’ll have a scan in another 2 months.

At any rate, I jumped at the chance to have scans 4 weeks earlier than I was expecting, because the waiting is the hardest part (how petty of me ;-} ). So I had a scan on Thursday morning early.

Late Tuesday afternoon, his nurse called with the results of my CA 15-3 tumor marker blood test results: the number was down by nearly half – excellent news, yes?

Maybe. There isn’t a specific correlation between the amount of tumor marker in the blood and the size of tumors that is true for every person. For instance, when I had my recurrence, I had a tumor that was a little larger than the largest of the original tumors, and my CA 15-3 was somewhere around 9 or so. We did not check my tumor marker with the first set of tumors, since I had the surgery before I ever met with the oncologist, so I can’t say what it was at that time. But 9 is a perfectly acceptable “normal” level, one that an oncologist would expect means there is no tumor.

My prior tumor marker level at my latest oncology followup was 10 (I believe that was in July, but it might have been November, I’ve lost track of specific dates). And when we measured it at the time of diagnosis in March this year, it had soared to 1622. Knowing that there’s at least 1 tumor of nearly 4 inches diameter, other, smaller tumors, and multiple lesions on the liver, that seems to indicate aggressive growth in a short timespan.

But does the halving of the tumor marker mean that the tumors themselves will be halved in size? Probably not, although it is likely a good indication that the chemo is having some effect on the cancer. Dr. Medici says once we get a few scans and tumor-marker measurements, we should be able to figure out *my* personal marker-level-to-tumor-size correlation. It would be awesome if it was 1:1.

So why the rollercoaster?

I’m still adjusting to the idea that I have a terminal disease, which is pretty depressing.

Yet the hope that springs up when I’m told that the tumor marker is down is hard to repress. If we knew what that *meant*, it might be that I have every reason to hope that there has been significant progress; it also might be that it only means that the chemo is good at killing off the tumor markers in my blood, but not good at killing off tissue-bound tumors.

But of course, statistics don’t lie. It’s just that you never know where your position in the stat table is, until something actually happens.

So I’m trying to maintain a balance between hope and statistics – it’s a thin line, and it’s hard to keep your footing.

We’ll find out Monday what the results of the scan are, and there’s 2 out of 3 chances that I’ll remain on my current regimen – if there is progress in shrinking the tumors, or if there is no change in the size, I’ll continue as is; but if there is growth, we’ll be switching me to a new regimen.

Dr. Medici will hopefully have the results soon enough this afternoon to be able to make that decision, because if I’m continuing the same regimen, I will have chemo on Monday. If it’s changing, I’ll have chemo Monday only if he is able to get the new drug in on time.

Hate it or hate it, you gotta love chemo when your life depends on it. . .

11
May
10

Chemo #6 – The Non-Event

Due to unforeseen technical difficulties*, the show that normally appears at this time** is pre-empted by this unscheduled story. Your regularly scheduled show will appear next week***:

We routinely try to challenge Robin with new ways of making his brain think, and one of those ways is by hiding a treat or his cube, and then having him search for it. Another way we have challenged him is to put a Teeny Greenie (dental chew treat about 1-1/2″ long x 1/4″ wide) into a square kleenex box. He figured that out too easily, so we’ve tried stuffing toys and other things in on top of the treat so that he has to figure out how to get to the treat. He’s variously managed to pull stuff out, shake the box violently so that the toys fall out, and tearing the box apart completely.

So last night, I put one of his Super Greenies (5″ x 1-1/2″) into a kleenex box without anything else and hid the box. Not very well, as it turns out. However, the increased size of the Greenie made it difficult to get the treat out of the box, and his attempts to tip it out weren’t working. Usually with the smaller treat, he can shove his long nose in and pull the treat right out. With this bigger treat, it caused his jaws to be open too wide to be able to get the treat back out – kind of like the story of the monkey with the pitcher of nuts. If the monkey grabs just a few nuts, he can still pull his hand out through the narrow neck of the pitcher; but if the monkey grabs a fistful of nuts, he can’t get his fist out through the narrow neck. In theory sometimes monkeys are too greedy to go for the assured treat of a few nuts, so they’ll sit there with their fist clenched around a handful of nuts for hours, unable to get their hand out, but not able to eat any nuts, either.

Robin *wanted* that treat, and apparently badly enough that he didn’t want to take the time involved in tipping it out of the box or tearing the box apart. Unlike the monkey, however, Robin had a third option: since it was his mouth stuck in the box, he could eat the treat without taking it out. So he spent a good 10 minutes walking around with the kleenex box on his nose, trying to chew the treat. After Brian and I were done laughing hysterically about it, I took the treat out of the box so he could actually eat it instead of just trying and not getting much. I really wish I had a picture of it!

_____________________________________________

*Neutrophils, part of the bacterial-fighting white blood cell system, were too low to progress with the chemo, since the chemo would cause them to drop even further.

**Chemo #6

***I’m scheduled for chemo on Monday morning, 5/17/10.




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