Monday, January 9, 2012

Final comments about the clinical trial - 9 January 2012

On November 11, I was given the 5th infusion.  All went well except for the restless leg syndrome - again.  On December 6, I was scheduled for the 6th and final infusion, after which I would be on maintenance.  In the month between the 5th and scheduled 6th, I developed the one side effect they look at very carefully - rectal bleeding.  I had thought it was hemorrhoids because I had had such difficulty with constipation after the 5th.  However, it turned out to be colitis - again!  Avastin and Ixebipilone are the two culprits for developing colitis.  I had a sphygmoidoscopy scheduled for two days after the scheduled 6th infusion.  Because it becomes a real issue with the chemo drugs, Dr. Behbakht preferred to have me skip the 6th until he had the results of the test in two days.  The sphygmoidoscopy showed that it was not hemorrhoids, as we had suspected, but full left-sided colitis.  Therefore, I am done with chemo and the clinical trial.  There would be real danger for me if I were to have continued with the trial.  Ethically, they could not continue giving me chemo drugs which cause rectal bleeding.

At first I was concerned that I had not gone the full six cycles.  However, I contacted Dave's cousin (an oncology radiologist).  When she called me back, she laughed!  First of all, she reminded me that I had barely qualified for the clinical trial to begin with (that 1/4" on the omentum), I went into the trial absolutely clear of all cancer and there is absolutely nothing magic about having 6 infusions!  She told me that clinical trials' and chemo procedures' doctors and teams got together and decided either one infusion, six infusions or twelve infusions would become the standard of treatment they were going to offer.  That means, there is nothing magic about six - it could have been five or seven.  Since I had been given five infusions successfully, Dr. Behbakht feels confident that I got what I needed.  Dr. Fallah (Dave's cousin, Juliet)  said she expected that the first infusion took care of everything needed. I saw Dr. Behbakht on December 6th and had had a CT scan the week before.  I am still clear.

By Christmas, I was feeling pretty good but still iffy with the colitis.  The two side effects that are still bothering me (now two months after my last infusion) are blurry vision and sinusitis.  Both are expected to clear up anywhere from 2 months to 6 months from my last infusion.

One good effect of the chemo was to prevent symptoms of my RA from flaring up.  I no longer benefit from the chemo - it has left my body, so the RA is effecting me slightly.  The colitis has completely cleared up and I will see my gastroenterologist on January 19.  To keep that at bay and to eliminate the RA symptoms, there is a chance he will put me on Remicaid, which will be done by infusion.  I have not had the port removed so it would be easy to get that and I wouldn't have to leave Estes Park to get it.  I can receive it right up here at the Medical Center.

One of the most frustrating things for me right now is that I am fatigued.  I have no energy and tire easily.  Dr. Behbakht says that will clear up, again, in that 2-6 months period.  I am going to try to get back into exercising on the recumbent stepper which has no adverse effect on my knees.  I did well on it when I was first starting chemo, but stopped it.  I probably shouldn't have!

Other than the pesky side effects, I really do feel fine.  I had worried that after the 6th infusion, I would be anxious NOT getting the chemo, mainly because this was what had been saving my life over the last eight months.  However, when the colitis interrupted the cycles and became more of an issue, I went straight through that anxiety and have none!  I don't look back on it as having been a traumatic series of treatments.  The biggest disruption to my life was the diagnosis.  From then on, it was "It is what it is!"  I have had tremendous support - physical, mental and emotional from my whole family and all my friends.

Since I am now off the clinical trial, I was concerned that my data would not be included or added to the data for the trial.  It will be included and Dr. Behbakht will continue to follow me for the next x years. I actually don't know how long that will be but I am optimistic that the medicine I have had will have done the work for which it was intended.  I keep going back to the report of the tumor board in Fort Collins that said if I went through the chemo, there would be a very low risk of recurrence.

There is that same something in my left breast that Dr. Behbahkt would like to have biopsied.  I see Dr. Medgsey on the 30th and she doesn't want me to have any tests until then.  She told me she doesn't want me to have another mammogram until I would be due for my annual one sometime next summer.  It was either July or August - can't remember which month - it's a bit of a blur.  In any event, I will have that, probably another ultrasound and then the biopsy.  I am not concerned.  It is something Dr. Behbakht wants to check off his list and since no one is particularly concerned about it right now, neither will I be.  I have been researching another breast examination - thermography.  Apparently, it does NOT show what they would be looking for and the biopsy will clarify everything.

That's it for now.  As I have new tests and get the results, I will post those.  However, I would really like to put all this behind me and get on with living!

Thank you all for reading my blog and for supporting Dave and me through all of this.  We are returning to 'normal', and I look forward to picking up and renewing those things I have enjoyed doing.  I am still tatting, want to get back to stitching and playing the dulcimer.  I haven't touched it in eight months - not by choice, but necessary because I had one thing and only one thing on which to concentrate.  Now I am beginning to see the light at the end of the tunnel - and it isn't a train coming at me.  I resume my normal activities, including being president of the Estes Park Genealogical Society, with a meeting this coming Thursday.  Since I don't have the energy I before all this began, I will take it easy and not push too hard, resting when I need to.

Thursday, December 8, 2011

8 December 2011

Well, I was given the two Fleet enemas for the sphygmoidoscopy this afternoon.  I was hoping for hemorrhoids - imagine that!  Unfortunately it isn't.  It is a flare-up of the colitis.  I am terribly disappointed.  We faxed the results of the procedure to Dr. Behbakht and have a call into the oncology nurse, Syd.  I so want this NOT to bump me out of the trial.  My gastroenterologist could tell me NOTHING about how this flared up. Everyone who has colitis has a 40% chance of getting a flare-up every single year.  It could have been the accumulative effect of the Avastin - but he couldn't say.  Because I cannot be given Remicaid or any other Colitis medication, there is only one option - oral and suppository medication that costs over $2000 a month!  Geez, what a choice!  Dave has gone down to the valley to get the suppositories/enemas.  They didn't even have them here in Estes!  I have the Asacol pills - he's gone down to Loveland to get the rest.

I am very disappointed and depressed this afternoon.  I am also short of sleep and want to take a nap, if my brain will slow down enough to let me.

I'll post more later.

Wednesday, December 7, 2011

7 December 2011

Thought I'd bring you up to date on my chemo.
I went down for my 6th and final infusion yesterday and expected to be done. However, two of the chemo drugs I am on prevent blood vessel formation (that's usually a good thing!). Yesterday, that was decided not to be a good thing because I have GI bleeding, a very common reaction to those drugs I am on. Dr. decided to hold off the last infusion (even though my blood counts were just fine - incredulously)! To give my GI tract time to heal (probable cause - hemorrhoids) the final infusion was delayed until a week from Friday. I should still be fine for Christmas, even with a few days out for being very tired and lethargic.

Tomorrow I have a sygmoidoscopy to determine what is going on and a week from Friday, assuming all goes as planned, I will receive my last infusion. As long as I can get this done before the new year, I'm happy. And I agree with the Dr.'s assessment that gives my body time to repair this last wrinkle. Actually, this is the only wrinkle I have had during the whole chemo and I can take it. So I am not too disappointed.
The internal exam was more complete yesterday, of course, and my Dr. is very pleased.  There is absolutely no sign of any active cancer.  He assured me that, in his opinion, my GI bleeding is nothing more than hemorrhoids and I just need a few days to heal them.

I agree with his assessment and am only a little disappointed.  This is but a small wrinkle in my chemo road.  I have not had any real serious side effects or problems during my whole trip with this and not concerned about the delay.  For me to close this book, I merely want to be done with it during the calendar year 2011.  I want 2012 to be a fresh, new year!

Thank you all for your support through this.  I am confident that all will continue to go well.

One of the things that I WAS going to discuss with my Dr yesterday was that I was experiencing some anxiety about ending the medicine that has saved my life.  When you are put on medicine that is that serious, it is a little difficult to think of not getting it, even though I, of course, don't want to stay on chemo!  Someone I was talking to said I might try thinking of it like anyone does about, for example, antibiotics.  When you take that last pill over whatever length of time, it is because it has done its job and you don't need it any longer.  So, I am trying to think of this as a chapter in my life where I have received the medicine I needed and am now well.  My Dr. and I never got around to this discussion!

My Dr. said he was absolutely delighted with my progress throughout this chemo and was actually surprised that my blood counts were right where they should be, even with this GI bleeding.  He was incredulous about that!  There was no indication with any of my blood work that I was experiencing any difficulty.  He is not at all concerned about this GI bleeding - just wants to give me time to heal.  And he is not concerned in the least about the delay in the 6th and final infusion.

Friday, December 2, 2011

1 December 2011

I have had 5 infusions.  This last one gave me some problems - constipation like I've never had before!  Finally talked with the pharmacist who gave me wonderful advice - Mira Lax.  It turns out that was exactly what I needed and if anyone else has constipation for whatever reason, I can't recommend this highly enough.  It is very gentle on my system and all you do is mix it in a glass of water.  I starts out cloudy and that disappears - drink the water without any taste or after-taste.

I didn't feel at all well the week following the infusion and I had trouble during the infusion.  I was given Ativan immediately followed by Benadryl.  The Ativan didn't have a chance to take affect before I got the Benadryl, so I ended up drowsy and restless.  They finally gave me another dose of Ativan (1/2 mg) but, frankly, all that did was make me drowsy and restless - not a great combination. I didn't like my reaction to all that.  It effects my memory.  Bill called and I didn't remember talking with him at all!

After the week of not feeling well, I ended up in ER with a kidney stone, which I passed while I was there!  That means I didn't drink enough water all that week.  I admit it and will make a serious effort to drink something more following the 6th and final infusion.

Then last Wednesday, I had rectal bleeding which scared me to pieces.  I called Anschutz Cancer Center and was able to talk with a GI nurse, who told me to call my gastroenterologist, which I did - immediately.  He, of course, was off for the day, but his nurse was wonderful and calmed my fears.  He called the next morning and feels that it is (1) not cancer (phew!), (2) not a flareup of the colitis and (3) nothing to worry about because I now have hemorrhoids.  Never having had them before in my life, I didn't even consider that was the reason for the bleeding.  He advised just watching it for a couple of days.  When it hadn't diminished by today, I called him back.  He prescribed a suppository (oh, joy!) and will do a sygmoidoscopy next Thursday.  That is far less invasive than a colonoscopy and will not interfere with my final infusion.  I won't even need anesthesia.

My lab work was absolutely fine - all the blood counts had gone back to normal after dropping that first week.  My blood pressure was up a little 130/80 but my oncology RN was very pleased and not concerned about the rise in BP.  Actually, it isn't up all that much from 126/74 the previous week.  Considering all I went through from week 1 to week 2, I'm not concerned.  She obviously wasn't either.

My sinus congestion continues to be a bother - but I am finding that the sinus saline neti pot works very well in conjunction with a decongestant. [I was just watching the weather station who delivered a scathing report on CT's CL&P, which was woefully unprepared for recovery following that horrible snow storm the week of Halloween.  They apparently are living up to our name for them: CT Loot & Plunder!  I remember when we first lived in CT.  If a rain cloud passed over our house, we lost power!  We finally found out that we weren't on the Newtown line at all - but, in fact, the last house on the Brookfield line.  Needless to say, that house which is at the END of the line does NOT get first service].

My infusion had been scheduled for today, but was moved because my Dr. had something else he was doing today.  So my final infusion is next Tuesday, December 6.

I now am entering a new phase of my last infusion.  I am actually anxious about not having the chemo.  I know that doesn't make sense to some, but while I was fighting for my life, I put myself in my Dr.'s hands and got the medicine I needed to make me well.  After Tuesday, that will no longer be available to me.  That causes me some concern.  Even though I rationally can say it has done the job it was supposed to do, all of a sudden I am losing something real that I was holding on to - my life line.  I have talked with two friends who have been through chemo and they both tell me this is perfectly normal.  It took one of them two years to trust that 'it' wasn't coming back.

My hair continues to grow and everyone really likes the new 'do'!  It is thick and curly and I love the feel of it.  One friend says he thinks it is more silvery.  I don't know about that, but I'm thrilled I didn't lose it.  That helped me not feel depressed.  Losing one's hair is so demoralizing.  All femininity is gone, despite everyone saying I have a great shaped head.

I will try to write more often following the last infusion.  Thank you all for your moral support.  That has gotten us through this.

My Siamese Scarlett just came and gave me a headbutt so I think she needs some lap time.

Saturday, November 12, 2011

12 November 2011

Yesterday was kind of a mixed bag.  When I got there I had to go to the main desk and register that I had arrived.  Because of my problems with the RN last time for the lab work, I told the woman at the desk that I did not want the same RN I had last infusion.  She asked me who it was and why.  I didn't remember her name but described her and she knew who it was.  I told her that the main problem arose because she would not listen to me.  I know ME better than anyone else and when I say I have to be inclined for access to the port, it just makes everything go smoothly.  Instead, she 'knew' better than I and, therefore, the procedure took 1 1/4 HOURS!!!!!  The registrar said Joanna wasn't there today (they rotate) but she would note it on my chart.  I then went out in the hall to sit and wait.  Within just a few minutes, Maureen called my name.  From the time I got up, walked into the cubicle, explained the procedure for being inclined, she said, "Yes, I have accessed you before."  She inclined me - got the access, drew the blood she needed, capped the tube for infusion.  I was back sitting in the hall no more than 5 minutes later!!!   Hurrah.  I told her she had lowered my BP by 10 points!  I also asked her how long she had been an RN (5+ years) and where she had trained.  She said CT!  I asked where and she said Fairfield.  I told her I had lived in Newtown for 20 years and that my best friend was living in Fairfield.  We had a good laugh.

Everything is good from the blood work and physical exam.  However I had some difficulties with the infusion.  I had told the Dr. that I had again had the restless leg syndrome with the previous infusion so he ordered Ativan.  It was given through the port, immediately followed by the Benedryl.  Unfortunately, I was both groggy and had RLS and just couldn't relax.  I would start to drift off but then would be restless and just couldn't relax.  I finally got another 1/2 mg of Ativan but that just didn't take care of it.  I finally asked if I could go lie down on a bed, instead of reclining in a chair.  That helped a little and I did doze but couldn't quiet the RLS.  That, unfortunately lasted about 2/3 of the infusion.  I finally was able to have the lights on and could sit up without discomfort.  Dave said I was a lot more fun!!!  I walked like a drunken sailor!

I will gladly suffer those side effects if that's the worst I have during the infusion, but I do think I need the 1 mg of Ativan before the benedryl  and time in between those two drugs.  Because they feed all the infusion chemo through saline, I spent last night peeing every 1 1/2 - 2 hours all night!  So I didn't get a particularly good night's sleep when I was really exhausted.  Tonight will be better, I am sure.

The fact that I have only ONE MORE TO GO encourages me to finish it out.  I had already decided that unless cancer showed up in one of the test or exams, I would finish the chemo regime regardless, this was an easy decision to make.  In fact, if cancer showed up while I am on this trial, I will be booted out of it.  Obviously, it would not have been working.

I sort of expect the same fatigue and lethargy to become the routine this next week.  I will just rest and sleep when I need to.  Not a problem.

I also screwed up the courage to ask the Dr. of the four from this area, how many have been able to continue the trial.  He said I was the only one.  The other three came into the trial with cancer present and it progressed, which means the chemo was not working.  With that, they are automatically out of the trial, unfortunately.  When he comes in to have the consultation and do the physical exam, he is much more personable with me.  Now I know why.  I guess I am his start patient.  I am sorry the other three have had to withdraw and I wish them well, although I don't expect they are having an easy time of it.

I feel fine today.  Last time it was Sunday before I felt the side effects.  Regarding the RA, something is working very well. With the 1st infusion, I was free of RA symptoms for about 5 days; 2nd fusion, about 10 days; 3rd infusion, 2 full weeks; 4th infusion the full three weeks.  I have no symptoms today so that is continuing.  I asked them if they knew which drug it was that was doing the magic.  They don't know but are anxious to follow me.  We're all hoping it is the Avastin, which is the biologic I will continue after the 6th infusion.  I am the only one who will initially know if that is the one working.  Keep your fingers crossed.

That's it for today.  Thanks for your terrifically good thoughts.

Sunday, November 6, 2011

6 November 2011

The last infusion (#4) was interesting - by the time we left the hospital, my RA symptoms had totally disappeared.  I don't know which of the drugs is doing the magic.  I hope it is the Avastin (Bevacizamab) because that will be the maintenance drug after the 6th infusion, which should be December 2. Today is day #16 and so far the RA is not as bad as it was this day with cycle #3.  I suppose that is part of the cumulative factor.

I did experience one more side effect with this last infusion.  Beginning Monday after the infusion, I was very fatigued and had absolutely no energy.  That existed all week, through Sunday.  When I woke up Monday morning, both symptoms were completely gone and I have not been unduly tired and have had plenty of energy.  I suppose, as this is cumulative, this will be the pattern for the next two infusions.  I don't fight it - simply go with it - take naps and don't try to do too much that week.

The other side effect that bothers me is the sinus congestion.  There are times when I have to choose between chewing or breathing.  It isn't fun.  At the last Dr.'s visit (the day of infusion) I mentioned this to the Dr. and was told I could take Sudafed PE, Sudafed or Allegra.  When I talked with my oncology nurse on Friday, she said I should NOT be taking any of those because they raise my blood pressure and the Avastin raises it.  If I am over the line, they can't give me the chemo, so I am following her advise and taking Advil Congestion Relief.  That does seem to be working and I can take it every four hours, if necessary.  The important factor is that is doesn't raise my BP.  So, I take one before going to bed and have one available if I wake up congested in the middle of the night.  It is a little frustrating that the Dr. tells me one thing, the oncology nurse another.  I do wish they would communicate together and present a united front.

When I had my labs done last Thursday, I was still on Sudafed (Sudafed PE didn't work very well), so I think that accounts for my BP being a little high this week - more like 146/84.  I will find out this next week.

The side effect I noticed last cycle - blurred vision - is still with me.  If I am on the computer for too long, or work y needlework too intensely, or even read, my eyes get so tired and sometimes that gives me a headache behind my eyes.  When I notice that happening, I stop whatever I am doing and look out the window as far into the distance as I can to relax my eyes.

We are in a winter storm pattern - two a week.  However, it does look like this next one will miss us, going south of us.  If there is forecast of snow for the day we go to Aurora for the infusion, we will opt to go down the day before and stay at the hotel across the street.  That way, my infusion will not be delayed.  I am so looking forward to #6 being done, although I have tolerated the chemo much better than I had any reason to expect.

My hair, by the way, is coming in thick and curly.  It is easy to style and I really think I will keep it shorter than I did before surgery.  It is just so easy to take care of and all my friends say they really like it short.

Friday, October 28, 2011

October 28, 2011

I had my fourth infusion last Friday.  The infusion itself went very well, although there was about a half hour of restless leg syndrome.  Luckily it did not last long.  This was with the Benadryl cut in half.  Darn!

The frustrating part of the day began when we arrived.  Lab work usually takes about 15-20 minutes.  This involves accessing the port, and drawing blood for the usual CBC.  The nurse would not listen to me.  I know how the port in MY body needs to be accessed.  I have to be tilted back a little.  She said she knew how to access and would do it her way.  Well - guess what didn't work!  She tried several times - finally decided to add TPA because there had to be a small clot at the end of the catheter.  TPA is Tissue plasminogen activator (abbreviated TPA or PLAT) is a protein involved in the breakdown of blood clots.  For that addition, I had to sit a half hour before she could draw that out.  So, she decided to draw blood the old-fashioned way.  She couldn't get it.  After trying twice, she went and got someone else.  That didn't work either, so she got a 32-year veteran ER nurse to come and try.  She got it - lickity-split - first try.  After sitting for that half hour, the first nurse was able to access the port while I slid down in my chair to get into a tilted position.  It worked.  I had been in there 1 1/4 hours!  Grrrr.  I will ask for a different nurse November 11.

Then I was taken back for weighing in, height and BP.  Guess what?  My BP was high!  While I tried to meditate (not very successfully) to get my BP down, she took it again and it was within acceptable range which meant I could receive the infusion.

I was taken to the office for the Dr.'s appointment.  When I was ready for his examination, I waited and waited and waited - for a full hour!  Finally, Melody (the weigh-in nurse) came by and saw that the nurse had not flipped the flag that says I am ready.  She went off, corralled Dr. Behbahkt and brought him back to the room. This was a total hurry-up-and-wait day.  However, the doctor reassured me that the CT scan is perfectly fine - absolutely nothing to worry about.  That small hollow cyst is on my abdomen (not near the bowel) about where my belly button is and is of no concern.  He did a thorough internal and I am fine!  He and I discussed the frustration of getting incomplete information.  From now on, he will call me personally after a CT scan when he has had a chance to read it.  I can also ask for a disc of the scan to send to Dave's cousin, Dr. Fallah, who has volunteered to read them and tell me what she sees.  That was actually pretty cute on Friday.  I had thanked Dr. Behbakht for sending the scan to Dr. Fallah (Juliet).  He said he was absolutely fine with a second opinion.  Then he looked kind of sheepish and said, "I hope she agreed with me."  I laughed and said she had.

Then I went into infusion.  The good news is that at Judy's suggestion, I decided to monitor when the RA symptoms go away.  This infusion, by the time we left at 5:30 my knees were fine - pretty quick, eh?  Now, a week later, they are still fine.

While I was in with the Dr., I told him I had had to have a haircut.  I went Wednesday just to have it trimmed around the ears and at the nape of the neck.  Now everything looks purposeful.  Dr. Behbakht said he had had a haircut, too, but mine looked cute!  I have now ventured out with friends without any scarf or wig.  Everyone likes my hair and it is really growing in - curly!

I do have some side effects due to the accumulative effect of the chemo.  I still have sinus congestion but can take Sudafed PE, Sudafed or Allegra for it.  With the Neti, it is tolerable - something I can live with.  I am also showing fatigue and general lack of energy.  I still get up and dressed but can fall asleep pretty easily.  When I blow my nose I often get blood.  This, too, is the chemo.  And my voice is a little hoarse at times.  So far no neuropathy in either toes or fingers.  That is a relief.  I also still have the blurry vision.  My eyes get very tired easily even when reading.

My lab work from yesterday was as expected - all numbers looked good except the platelets which are generally down a little during this first week.  It is expected and will probably show more satisfactory numbers next week.  My BP yesterday was 134/84 with a heart rate of 64.

I also have no taste buds to speak of.  When I can smell food, it smells just fine, but when I taste it, it kind of all tastes the same.  This is not very appetizing.  So I eat because I know I have to.

We had a real winter storm this week.  It began snowing Tuesday evening and ended mid afternoon Wednesday.  We got somewhere between 9 and 14" in Estes Park.  It is heavy and wet.  Judy got as much in Fort Collins but also lost power.  Adam drained the water pipes and power was out until 6:45 pm last night.  They were able to stay with Adam's parents, Fern and Alan, also in Fort Collins, but with power.  Today Judy is catching up on laundry and putting a load or two through the dishwasher.  She agrees that it is amazing how we take certain things for granted - like electricity!

Next infusion: November 11