I had my 3rd infusion today. The lab work was excellent - all prep work = great! Dr. Behbackt said again how pleased he is that I am in THIS arm of the clinical trial. He is extremely pleased that I am having so few side effects. I showed him my buzz cut 'do', cut six weeks ago and asked him when would I lose my hair. He told me that if I had not lost it by now, I would PROBABLY NOT LOSE IT AT ALL!!!! I can't tell you how pleased I am about that news. I also asked him about the CAT (not PET) scan with contrast and my concern about the two lymph nodes picked up in the scan just before my first infusion He told me he was NOT concerned about them and expected to find NOTHING!!!! I have to have the scan as part of requirements for the trial - one after every 3rd infusion.
They kept to their original pre-med regime of giving me only half the Benedryl - 25 mg. I was told it is the Benedryl that gives me the cotton mouth. Thank you, Bill, for the suggestion of lemon drops. That should stimulate saliva and reduce the effect of the Benedryl.
I followed up on a suggestion of Judy's to keep track of the side effects on a day-to-day basis in chart form. I gave the Dr. a copy of this last infusion side effects. His said he wished every patient would do this. And that he would like to have a copy of it to give to every patient under his care. I am thrilled. He said he had no questions about the effects since the last infusion because he could see it all. I am going to tweak it a bit to 'clean' it up and send him a copy he can copy.
All in all, it was a terrific day! I was not nervous about the infusion - it went very well. The bevacizumab (Avastin) was given over 1 1/2 hours last infusion. Today, over 1 hour and starting next infusion, over 1/2 hour and it will remain 1/2 hour from then on. I am not having any ill effects or allergic reaction.
I should have decent hair length by Thanksgiving or Christmas! Hallelujah!
I think I have something to be very thankful for this year.
Friday, September 30, 2011
Monday, September 26, 2011
26 September 2011
I have been negligent about posting. Don't think I am doing poorly. I'm not. In fact, I am so busy I forget to post. I continue to feel well. It is amazing to me - this was not what I expected from chemotherapy. The only side effects I had with the second infusion (cottonmouth, headache and no taste for one meal) have dissipated and the only other side effect prevalent is that the good affects for my RA only last about two weeks. Week three was bad, but that also coincided with a turn in the weather: a drop in temperature and rain. This week is actually week #4 because my Dr. was not going to be there last Friday, so it was postponed for a week. The weather has changed back to summer - nice, mid-70's, sunny, no rain. The forecast is welcomed. I am not ready to give up on summer warmth.
I had my lab work done last Thursday, as usual. My BP was 136/82, heart rate 74, white BC count 4.4, platelets 149, RBC 14 and 43 - all normal.
After this infusion I have to wait one week and then have a follow-up PETscan with contrast. That is scheduled for October 11. This follow-up PETscan is required after every three infusions. I don't like being exposed to this much radiation but the cancer is worse. So, if this helps them see something sooner, so much the better. They will be looking at two lymph nodes that were prominent on the last PETscan due (they think) to inflammation following the surgery. That upset me for a day until I talked again with the oncology nurse. So I am trying to put that aside and not worry about something over which I have no control.
I had my lab work done last Thursday, as usual. My BP was 136/82, heart rate 74, white BC count 4.4, platelets 149, RBC 14 and 43 - all normal.
After this infusion I have to wait one week and then have a follow-up PETscan with contrast. That is scheduled for October 11. This follow-up PETscan is required after every three infusions. I don't like being exposed to this much radiation but the cancer is worse. So, if this helps them see something sooner, so much the better. They will be looking at two lymph nodes that were prominent on the last PETscan due (they think) to inflammation following the surgery. That upset me for a day until I talked again with the oncology nurse. So I am trying to put that aside and not worry about something over which I have no control.
Friday, September 16, 2011
16 September 2011
I have mentioned before that this whole process is something I can never get away from. This came home to roost yesterday. As usual, I went in for lab work and BP. No problem. My BP was 128/60, heart rate 74. My lab work was fine with white blood cells a little low which is completely to be expected in week two of this second cycle. I talked with Sid, my GYN oncology nurse at Anschutz and she told me I would need to have another CAT scan with contrast. This alarmed me but she said because I am in the trial, they have to follow the 'formula' and another CAT scan is called for after every three infusions. I don't like this - it is a lot of exposure to x-rays and more often than I want. I have to accept that but then she went on to say that they would be specifically looking at two lymph nodes in my abdomen that were larger than normal in the previous scan. This sent me into overload and I had a miserable night. I decided to call her back this morning and talk with her about it because we were very upset. I told her I thought I was CLEAR and she said I am. She apologized for upsetting me and went through it again. I said I guess I was over thinking this and she said, "You are but I can understand your concern." She will tell Dr. Behbakht (pronounced BAY' bachd) about her comment, upsetting me and my concern over them. She ended by saying she should not have even mentioned it - that the only reason they are even aware of them is that I am in the study - otherwise, they wouldn't be concerned about them at all.
I feel better after talking with her this morning and am trying to put it on the shelf where it belongs. It is amazing how a small comment can cause such a big reaction. Being sleep-deprived this morning didn't help my reaction. I think both of us will be looking for those lymph nodes to have shrunk in the next CAT scan October 11. Her explanation is that there is a good possibility that they were enlarged due to inflammation from the surgery. Hope she is right.
This is a roller coaster!!!!!
I feel better after talking with her this morning and am trying to put it on the shelf where it belongs. It is amazing how a small comment can cause such a big reaction. Being sleep-deprived this morning didn't help my reaction. I think both of us will be looking for those lymph nodes to have shrunk in the next CAT scan October 11. Her explanation is that there is a good possibility that they were enlarged due to inflammation from the surgery. Hope she is right.
This is a roller coaster!!!!!
Saturday, September 10, 2011
9 September 2011
I had the 2nd infusion a week ago yesterday. The side effects I had over the weekend were very minor: cotton-mouth and the beginnings of the chemo headache. Dr. Bekbaht said I should take the Zofran (anti-nausea) pre-emptively so I took one Saturday night although I did not even have a hint of greasiness or nausea. I took another one Sunday morning because we were going to a 50th Anniversary party and I didn't want any problem. Again I didn't even have the hint of queasiness so did not take another one - absolutely no problem. I did have the chemo headache with eyes aching for three and a half days - Sunday through Wednesday mid-day. Constipation seems to go with the weekend following the infusion and I have mastered it by stopping taking the iron pill and upping the Phillips Milk of Magnesia pills to two for the weekend. Then I am back on schedule and can resume the iron pill without having any difficulty. Nothing since and no other symptoms of side-effects. I know I am fortunate - Dave says I may be one of those people who breezes through this. I hope so but am not expecting to go through all six infusions without something else going on.
Because I could not stay on Norvasc for high blood pressure, my primary doctor switched me to Clonidine. I am on .2 mg morning and night. It is really doing a terrific job. When my labs were checked on Thursday, my blood pressure was 120/60 with a heartrate of 74 (after some walking) This is terrific in light of the fact that the Avastin (bevacizumab) will increase my BP over time. The rest of my labs were also good - WBC 2.7; RBC 13.4 and 40.5. The platelets were still in the acceptable range but lower than before this last infusion, at 101. It is normal during chemo for platelets to go down.
We went down to Fort Collins on Thursday, ran some errands and ate dinner with Judy and family. I had worn my wig the first time we saw the kids after my haircut. I decided to wear a tied scarf cap on Thursday and the kids simply were terrific! They liked the cap and were very matter-of-fact about it. Then I asked Vivian if she would like to see my buzz cut (it has grown to over 1/4" since I had it cut off). She did want to - liked the haircut and ran her fingers over my very short hair. Sid touched my head, too, but didn't seem interested in running his fingers through it. They both are terrific about what I am experiencing and I love their casualness about it.
I am feeling very well - not experiencing fatigue. I continue to go to PT (Medicare is paying for another two weeks) for leg strength, cardiovascular improvement and shoulder/upper arm strength. The first exercise I do is the recumbent stepper. I love that machine - no impact on my knees but it helps me strengthen my knees and legs. I can really feel the difference. Also, it does NOT hurt my back. I am up to resistance of 3/4 for 15 minutes. For the shoulder/upper arm strengthening, I do exercises with 1#, 2# and 3# weights. I no longer have the upper arm/shoulder pain I had for which I initially started this PT. One of our errands Thursday was to pick up 1#, 2# and 3# weights at the SNIAGRAB sale from Sports Authority. I bought two sets so I can balance the weight lifting. I hope to continue at least two days of PT throughout my chemo. After next week I will have have to pay for the use of the recumbent stepper - $5.00 for 1/2 hour. Not bad!!
Because I could not stay on Norvasc for high blood pressure, my primary doctor switched me to Clonidine. I am on .2 mg morning and night. It is really doing a terrific job. When my labs were checked on Thursday, my blood pressure was 120/60 with a heartrate of 74 (after some walking) This is terrific in light of the fact that the Avastin (bevacizumab) will increase my BP over time. The rest of my labs were also good - WBC 2.7; RBC 13.4 and 40.5. The platelets were still in the acceptable range but lower than before this last infusion, at 101. It is normal during chemo for platelets to go down.
We went down to Fort Collins on Thursday, ran some errands and ate dinner with Judy and family. I had worn my wig the first time we saw the kids after my haircut. I decided to wear a tied scarf cap on Thursday and the kids simply were terrific! They liked the cap and were very matter-of-fact about it. Then I asked Vivian if she would like to see my buzz cut (it has grown to over 1/4" since I had it cut off). She did want to - liked the haircut and ran her fingers over my very short hair. Sid touched my head, too, but didn't seem interested in running his fingers through it. They both are terrific about what I am experiencing and I love their casualness about it.
I am feeling very well - not experiencing fatigue. I continue to go to PT (Medicare is paying for another two weeks) for leg strength, cardiovascular improvement and shoulder/upper arm strength. The first exercise I do is the recumbent stepper. I love that machine - no impact on my knees but it helps me strengthen my knees and legs. I can really feel the difference. Also, it does NOT hurt my back. I am up to resistance of 3/4 for 15 minutes. For the shoulder/upper arm strengthening, I do exercises with 1#, 2# and 3# weights. I no longer have the upper arm/shoulder pain I had for which I initially started this PT. One of our errands Thursday was to pick up 1#, 2# and 3# weights at the SNIAGRAB sale from Sports Authority. I bought two sets so I can balance the weight lifting. I hope to continue at least two days of PT throughout my chemo. After next week I will have have to pay for the use of the recumbent stepper - $5.00 for 1/2 hour. Not bad!!
Saturday, September 3, 2011
Infusion #2 - Part B
We went in yesterday for the #2 Infusion. Everything went extremely well. They halved the IV Benadryl and I had absolutely no problem at all. Instead of 50 mg, I received 25 mg. Now we know that is the right amount for me. I asked about not getting it at all, but they don't want to eliminate it altogether. It will help me NOT have an anaphylactic shock or allergic reaction to the chemo drugs. The whole infusion took nearly 5 hours. The pre-meds are given and then I have to wait for one hour before starting the treatments. Ixebepilone was given first (took one hour); then the carboplatin (another hour); then the bevacizumab (Avastin) for 1 1/2 hours. With the next infusion, that biologic bevacizumab will be given over one hour; from then on over 30 minutes.
I felt well enough that we drove into Boulder and went to dinner. On the way, we were in the most torrential downpour I have seen since living in New Jersey. For about 1/2 hour we were hit with rain and hail, with standing water on the road. We didn't dare pull over and stop because the visibility was virtually zero. When we pulled out of it driving west, we had beautiful blue sky. What a trip. We drove Judy back to her car and did a little shopping in Longmont before getting home about 9:00 pm. That made for a very long day.
The great thing is that so far I am doing fine and not experiencing the worst part of getting chemo. Although I am tired today, I don't feel it is chemo tired - it is being in the fresh air and steering the sailboat tired. I think I will sleep very well tonight.
I felt well enough that we drove into Boulder and went to dinner. On the way, we were in the most torrential downpour I have seen since living in New Jersey. For about 1/2 hour we were hit with rain and hail, with standing water on the road. We didn't dare pull over and stop because the visibility was virtually zero. When we pulled out of it driving west, we had beautiful blue sky. What a trip. We drove Judy back to her car and did a little shopping in Longmont before getting home about 9:00 pm. That made for a very long day.
The great thing is that so far I am doing fine and not experiencing the worst part of getting chemo. Although I am tired today, I don't feel it is chemo tired - it is being in the fresh air and steering the sailboat tired. I think I will sleep very well tonight.
Thursday, September 1, 2011
#2 Infusion - part A
I am saying part A because every Thursday I have to have labs and BP done in order to see IF I can go ahead with the infusion tomorrow. My BP this morning was 126/70 and heart rate 60. I don't know what the blood work shows yet, but am confident that they are okay. I had been concerned earlier this week because I thought my BP was running high. We have just bought a blood pressure monitor and it was showing very high BP on me. When I saw the triage nurse this morning she suggested that it might be faulty since my pressure this morning was so good. I will take it in with me next week and try to calibrate it with what she gets. So...needless worry on my part.
I have been thinking about a lot of things lately. Dave has gone back to working at the "Y". Last week he worked five days and the one day he didn't work, we had to take the car in for servicing. I was feeling resentful that he was gone so much, leaving me here alone. I think I understand now why I had those feelings. I don't mind his being gone (goodness, he worked outside the home for xx years and was gone every weekday. I was on my own for years and years, taking are of errands and children, working myself and running my store). I think it comes down to the fact that he can 'get away' from my illness. I know he doesn't 100% but he is busy there and doesn't have to see me with no wig on or look at me and wonder how I am feeling. He can escape, if only for a few hours. I can't! It is with me every minute of every day. There is no 'getting away' for me. I look forward to being DONE with this chemo so that I can enjoy that 'very low risk of recurrence' the Fort Collins tumor board reported on my case.
I have no idea how I will react to tomorrow's infusion. I do know, based on the first infusion that the IV Benadryl will be cut in half. I sure hope that takes care of my reaction to it. My appointment is at 9:30 for the lab work, which means gaining access to the Power Port. Then I see the Dr. at 10:30 and begin the infusion after that. Being a private person, I don't look forward to the pelvic exam each and every time. I know it's necessary but I don't have to like it.
It turns out that I needn't have gone in for lab work today. Because my appointment is tomorrow, I can skip the third week of lab work up here. That's good, but I wasn't told until after I had had it done. No harm done...just didn't need it. Of course, I had to go in for my BP anyway so it's no biggie. That's fewer labs I will need tomorrow.
I have been thinking about a lot of things lately. Dave has gone back to working at the "Y". Last week he worked five days and the one day he didn't work, we had to take the car in for servicing. I was feeling resentful that he was gone so much, leaving me here alone. I think I understand now why I had those feelings. I don't mind his being gone (goodness, he worked outside the home for xx years and was gone every weekday. I was on my own for years and years, taking are of errands and children, working myself and running my store). I think it comes down to the fact that he can 'get away' from my illness. I know he doesn't 100% but he is busy there and doesn't have to see me with no wig on or look at me and wonder how I am feeling. He can escape, if only for a few hours. I can't! It is with me every minute of every day. There is no 'getting away' for me. I look forward to being DONE with this chemo so that I can enjoy that 'very low risk of recurrence' the Fort Collins tumor board reported on my case.
I have no idea how I will react to tomorrow's infusion. I do know, based on the first infusion that the IV Benadryl will be cut in half. I sure hope that takes care of my reaction to it. My appointment is at 9:30 for the lab work, which means gaining access to the Power Port. Then I see the Dr. at 10:30 and begin the infusion after that. Being a private person, I don't look forward to the pelvic exam each and every time. I know it's necessary but I don't have to like it.
It turns out that I needn't have gone in for lab work today. Because my appointment is tomorrow, I can skip the third week of lab work up here. That's good, but I wasn't told until after I had had it done. No harm done...just didn't need it. Of course, I had to go in for my BP anyway so it's no biggie. That's fewer labs I will need tomorrow.
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