The Makers of Abraxane - My Hero!

. . . I Received My Treatment!

While waiting for my insurance company to "review and approve" the new Abraxane chemo treatment I was suppose to have, the tumors were growing and the pain was getting much worse. I would cry at night when the pain seemed relentless and the pain meds didn't even seem to help. But the most wonderful news of all was that my Oncologist and his staff solicited the drug company who makes Abaxane and the drug company decided to cover the cost of my treatments while we wait for the insurance company to get off their duff.

When I met with my Oncologist yesterday, he couldn't praise the drug company enough for this compassionate and giving gesture. They will benefit from my treatment results which could benefit future pancreatic cancer patients.

Yesterday, I received my first treatment of Abaxane and it went SO much better than the prior chemo I'd been on for 8 months. I didn't have to have a lot of intravenous drugs pumped into me prior to the infusion... the infusion time was shorter... no pain the the arm where the chemo went in... and so far, I don't feel any horrid side effects. I'll have this particular chemo treatment every week for three weeks and then get the forth week off.

It is my Oncologists hope that this chemo will begin shrinking the tumors and I can feel some relief within the first two weeks. He also hopes that I can stay on it with positive results for even up to a year. But, he says, even a month of relief would be good. I pray for longer than a month!

I am very thankful to my Oncologist, his staff and the Abraxane drug company for allowing the opportunity for me to begin this treatment. Together, they are my hero's! I have so much more I want to do in my life and cannot imagine laying around lethargic and in pain for the rest of it.

Thank you to all who continue to send prayers. I am so grateful to have them!
♥

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

FDA and Insurance Companies Play 'God'

. . . "no, you can't have it until way say so!"


Expecting to start my new chemo treatment (of Abraxane) on September 28th, my husband and I were stunned to hear that I am now subject to waiting for all the red tape. While Abraxane is FDA approved for breast and lung cancer, it has not yet been approved by the FDA for pancreatic cancer. Google it for pancreatic cancer and you'll find studies have shown it has had good results. Thus, the testing has been done. But...FDA, dragging their feet, hasn't put it out there for use by doctors on their patients, yet. SO, our insurance company has to go through a review process whereby they are the decision makers on whether or not I get my much needed, grabbing-at-straws-now treatment! To top it off, they want to take their sweet time and have stated that a decision may be reached in about 3 weeks. If something works, why would they not let someone have it? Why let the person suffer in more pain...allow more damage to be done...or let the person die? Do they know that cancer doesn't stop growing to appease their schedules?

So, the pain progresses and I'm on a steady regimine of Advil. It doesn't quite stop the pain entirely, but anything stronger makes me tired, thus, all I want to do is sleep. I'm suppose to go back to my Oncologist on October 19th for the Abraxane infusion IF the treatment has been approved by then. I hope I don't end up in some insurance beaurocratic limbo, unable to get any treatment done while in the meantime insidious little mutinies are allowed to progress unchecked. Meantime, I feel like I have something stuck in my throat. Oh yes....it's a flippin' tumor!

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Chemo Accumulation

. . . I'll Have Some Cheese With My Whine, Please!

Let me first say that while I realize that I could feel a whole lot worse, and likely will feel worse later on down the road, I'm still going to complain. Experiencing the deterioration of my body, loss of the ability to do things and losing the person I use to be is frustrating. Damn this cancer! Damn this chemo!...though, without it, I probably wouldn't be here today.

For the past 8 months, I've been on a regimen of monthly Oxaliplatin chemo infusions along with twice-daily doses of Xeloda chemo pills. Since my Oncologist reduced the dose back in March...and then spread the infusion regimen to every 4 weeks rather than every 3 (back in July), some of the side effects have become less of a problem. But, as the chemo continues to accumulate in my body, there are other side effects that have reared their ugly heads and become a problem. Before I get into those two issues, let me just say that . . .


My hair started thinning again back in June! I hate that!! (Okay...not a major deal but certainly makes me feel less of the person I use to be).

Onward . . .

Most annoying. . .

1) High Blood Pressure: I have never in my life had high blood pressure! In fact, I always ran a bit on the low side (117/74). I'm hitting numbers like 148/98 and 151/101 now. My nurse told me it was the chemo causing it. It makes my ears ring, my heart pounds, I get the jitters and bad headaches (that Advil won't even help). I find that if I stay away from salts and sugars, it's a wee bit less of a problem...but still a problem. So far, my Oncologist hasn't said how or if he's going to treat it. I have a CT scan this month. Perhaps he's waiting to see the results from that before he makes any decisions.

2) Cold Sensitivity: Oxaliplatin chemo causes neuropathy, whereby I cannot touch anything cold or eat and drink anything cold without experiencing pain, tingling and numbness. The pain is as if touching dry ice...so cold, it hurts. Eating/drinking cold things causes a shocking pain in the mouth and my esophagus feels as if I've swallowed two huge ice cubes whole. And when I say cold things, I mean anything below body fluid temperature. This side effect lasts for 2 to 3 weeks before tapering off. I've been dealing with this for 8 months but it's now progressing into another area of my body. My lungs hurt! What's happening now is that I get pain in my lungs whenever I'm in temperatures that go below 80. The weather here has been in the 90's and 100's so I turn on the air conditioning . . . and here it comes! The pain beats me down. I get short of breath and lose energy. I find myself laying down and burying my nose under the blanket (so I can breath my own warm breath to help the pain subside somewhat). Going to the grocery store, I come out of there with painful lungs. When it zaps my energy, I can't do much of anything. I went to my grand daughter's high school football game last night. The weather was gorgeous! A perfect summer evening (78°), no need to wear a jacket...and yet my lungs began to hurt. They still hurt today. Advil is the only thing that makes it completely go away...until I'm in another cold area. Truthfully, I'm not sure if it's the chemo causing this problem or...maybe the lung tumors have grown. I can't imagine it to be tumors, though, as the pain is not always there. I'll find out on Sept 28th when I see my Oncologist.

Thank you for letting me rant, whine and complain. I do realize things could be a whole lot worse. But, I'll tell you...the lung pain and lack of energy sucks!

What's next:
I'll have a CT scan on September 9th and see my Oncologist on September 28th to get the results. At best and with hope, prayers (and luck?), maybe the tiny tumors that were in my lungs have gone away and I can finally go off chemo.

Meantime:I'm still doing as much as I can...going places, cooking, enjoying my crafting (crochet, candle and soap making). Life is still good :-)

Aroma Fields Candles & Bath
~Marilyn's Silly Website~

Living With Cancer & Chemo

Thought I'd better jump in here and post something. The more time slips by (and oh!...it's flying so fast!), the harder it is to post since it feels as though there is so much to catch up on. Actually, not really. Here's an update:

The radiation therapy combined with chemo has helped my hip immensely! I have no pain and I'm walking normal. A CT scan in May revealed that the tumor in my hip had shrunk.

As mentioned in my prior (February) post, I was to undergo a series of Oxaliplatin chemo infusions combined with Xeloda chemo pills in this manner: Infusion of Oxaliplatin every 3 weeks and a twice-daily dose of Xeloda pills (3 in the morning; 2 at night). Then, a glorious week break from all chemo before starting over. (Oh!..how I love those weeks off!).

Then I hit a bump in the road. In March, after a chemo infusion, I spent the next few days struggling with intestinal pain (so bad, I could hardly walk or stand), no energy and a high fever. The fever climbed each day...beginning from 101 and up to 103. My daughter took me to Emergency on the 4th day that followed the chemo infusion. I was hospitalized for a week and put on 3 different antibiotics because of an intestinal infection. Apparently, my intestines were extremely swollen and inflamed. My Oncologist thought that chemo had something to do with it so he gave me a month off (with no chemo..yay!) and reduced the dosage for the following treatments. While in the hospital, I had another CT scan which revealed that the chemo wasn't working (yet). Not only were the tiny tumors in my lungs still there...but three of them had increased in size. I didn't really want to panic yet since I'd only had two chemo infusions...but, tired of the chemo, tired of the cancer, tired of feeling awful, tired of making the hospital a part of my life, tired of not being able to make future plans...I wanted to hear good results.

March - April: The reduced dose of chemo included a lesser dosage of Oxaliplatin (I don't remember the percentage in which is was reduced)....and reducing my Xeloda pills to 2 in the morning (rather than 3) and 2 at night. Since March, my intestines are much more comfortable (no pain, no pressure) and I've had no problems with fever. But, I was on a roller coaster of emotions with not knowing if the chemo was going to work at all since the CT scan I had in the hospital was not good news.

May: In May, I had another CT scan. Comparing it to the one that was taken in March (while I was in the hospital), it showed that the tiny tumors were still tiny AND that the 3 larger tumors had shrunk. This news made my husband and I (and my doctor!) ecstatic! The chemo (even at it's reduced state) WAS working! Doc said that even if the tumors remain tiny and don't grow...that's a good thing. Bring it on! I can do this! Of course, I know that I can't be on chemo forever. It builds up in the system and one day, the body will either no longer tolerate it...or the chemo will cease to do good work.

June: Simply went by quickly!

Now July: . . . and speaking of "chemo building up in the system" . . .
In seeing my Oncologist this week for my routine appointment (just prior to my chemo infusion), we discussed the recent additional side effects I've been having. Along with the usual two weeks worth of cold sensitivity whereby I cannot touch, eat or drink anything cold without it causing pain (which is a total pain in the butt!!).. and the 3 days worth of fatigue that follows the infusion....I'm now starting to lose my hair again (it's falling out strand by strand). I also have a numb feeling in the tips of my fingers and electrical buzz jolts to the bottom of my feet. And also, I'm feeling sleepy most of the time (elevated fatigue). These side effects are not going away. This is a result of the chemo building in my system. If left unattended, it could become toxic. So, my Oncologist decided to spread my chemo infusions out. Now, instead of having the infusion every 3 weeks, I'll have them ever 4 weeks. I'll still take the Xeloda pills for two weeks (same reduced dosage). Thus, I get TWO weeks off (free from all chemo!) rather than just one. And, I got this week off, too. I'm so thrilled! I really like not having to be on chemo! And I hope it stops the additional side effects. I'd like to keep my hair (since it grew back in nice and thick) and I surely don't want to end up with permanent neuropathy in my hands and feet.

I still take things day by day, trying to live as though my life is normal. But it's certainly not like it use to be. I know my energy limitations so I don't get to do as much as I use to. I know my intestines now (due to the whipple surgery combined with the effects of chemo)...I just try not to go places until after 11am. I find joy in small things and I appreciate and thank God for each day that I wake up with no pain and enough energy to do the things I need to do.

What's Next? I will have a CT scan in September to see how things are doing. Hopefully, I'll be told that I'm in remission. Doc said, "It could happen." I pray for this!

Thank you all for your continued prayers! I know they're working as I have many, many good days. I hope you all are having a wonderful Summer!

Aroma Fields Candles & Bath

Follow Up

. . . ending on a positive note!

After my surgery and throughout the past 10 months, I would regularly meet with my Oncologist and, although he would always tell me that I looked great [considering what I'd been through], he would consistently relate the depressing statistics of this horrible disease. I would long for some hope; something to let me know that there just might be a chance that I could end up in the 20% group who survive this cancer. I understood that he could never obligate himself to predicting a positive outcome...but how hard would it have been to say that "yes, there is always a chance you could beat it."?! During one visit, he even went so far as to tell me that, in the end, I'll readily accept death. Eeeeeekkk!! At the end of each visit, I'd head home with a heavy cloud over my head. It was difficult to thwart the desire to just curl up on my bed in morbid depression, gazing out my bedroom window at the breeze blowing the graceful trees....thinking that there was no doubt I'd be leaving this beautiful life soon. My family was wonderful in helping me to gain back my positive attitude. It normally took about 3 days. But there was always that lingering death sentence echoing in the halls of my mind.

With the completion of my treatments, I was due to see my Oncologist for a follow up this week. Knowing that this would be the last time I'd see him (or any other doctor) for quite some time, I didn't want to leave with that heavy, dark cloud again. I didn't want to go home in depression and live the rest of my remaining life never able to plan ahead, always hurried to finish a project for fear it would never get done, looking at my son and knowing I'd never meet his bride or see his children...and trying to accept the idea of death......I just didn't want to live like that! I was determined to tell my Oncologist that I wanted (desperately!) to end this visit on a positive note....and I would tell him why it was so necessary. Sometimes, doctors (brilliant as they may be) don't realize that their bedside manner just plain sucks!

On Tuesday, this week, I visited with my Oncologist and it was very different than anything I'd experienced. He read the results of my blood work and told me he was delighted at how good they were. He shared with me that I'd done extremely well through the treatments over the past several months. He gave me the impression that most pancreatic cancer patients don't make it through the treatments without having the cancer come back. I was already an exception. For that, he said, he held more hope for me than normal. He shared with me about an 80 year old patient who was also at a Stage 3, had been through the same surgery and treatments as I and who is already 3 years in remission. All of this...every bit of it!...was fabulous to hear! I left there with wings on my feet, ready to take flight and LIVE!
I can now feel that if I spend money on some new clothes, it won't be money wasted. I can get a cute hair cut to make the short re-growth (from the loss of hair due to chemo) match up more to the long strands that I didn't lose. (Yes, there truly IS a strong resemblence to Bill the Cat!). I can now buy new prescription glasses so I can SEE!! The medications over the past year have caused my vision to weaken horribly. I have hope that I will be able to see my son get married and to be the wonderful Dad I've always known he'd be. And I'm so very pleased that my family has this wonderful news so that they no longer have this stress in their lives.

What's Next:

I'm looking forward to this horrible head-to-toe itching to go away! It's an allergic reaction to the Xeloda chemo pills I had to take. The medication they gave me to eliminate the itching (Lord, I hate medications with a passion!) makes me very sleepy but gets rid of the itching for about 4 days..then it comes back. The doctor said that eventually, the itching will stop. I hope so!

Also, I'll be meeting with my Oncology Surgeon on November 5th to discuss fixing the incisional hernia that developed after the surgical site healed. It's uncomfortable. Sometimes, it feels like I'm carrying my stomach outside of my abdomen. Ugh!

And then...I'll get a CT scan in January to see how things are going.

It's all good :-) I appreciate all the emails, support and prayers so much! Please keep them coming...they are obviously working!

Aroma Fields Candles & Bath

Chemoradiation - One More Day

. . . Removing My Last Training Wheel

Though I have one more day of radiation treatment to go, I thought I'd post this update today since 1) I have more time on my hands today ...and 2) because tomorrow will be no different than any other treatment day except that it's my very last.

I've spent the past 5 weeks taking two Xeloda chemo pills each morning after breakfast...(and I'd put off breakfast as long as I could because I did NOT relish the side effects of these nasty pills!). In the afternoon, I'd drive 30 minutes to the hospital for my radiation therapy. After dinner, I'd have to take 3 more Xeloda chemo pills. I did this regimin 5 days a week...and got to recuperate each weekend.

How was the radiation? Laying on the hard table with my arms over my head (holding onto two cold, steal handles), the table automatically slides into
a small tube that encircles the area to be treated. Then the radiation starts. I can hear the machine churning as it goes around my body throwing it's piercing rays through my abdomen and back. There's no feeling to this, however. As I lay there in the tube for the 5 minute treatment, I pray that this will be the very last treatment I'll ever need to have. I pray that this cancer never returns. The side effect from the radiation are minimal but enough to keep me homebound as it affected the intestinal tract and stomach. In the evening, my stomach would feel like it had been tied in a knot and the build up of gas was enough to blow the paint off the walls. (Okay...I didn't want to go that far...but if someone going through this is looking for info, they may want to know that their side effects are a normal part of this treatment).

How was the Xeloda chemo? The side effects from these pills are cumulative. In the beginning, I experienced headaches, nauseousness, moodiness, a tired/sleepy feeling and I felt withdrawn. It was doable but with an effort to stay cheerful. As each day progressed, the tired/sleepy feeling became more intense.
Eventually, I even had to give up doing my crochet as I couldn't concentrate on the pattern. I wasn't able to keep up with responding to emails I had recieved from caring friends or phone calls from loving relatives. At the beginning of the 5th week (last week), I was extremely tired, very moody, not much of an appetite and an overall feeling of "I just don't freakin' feel good!".... my hands and feet began to burn, tingle and itch...and the horrible itching spread over my entire body. The more I scratched, the deeper the itch dove causing it to itch even more. I called the doctor who told me to go off the pills. It's been 4 days since I've been pill-free and I'm still itching, though it doesn't seem to be quite as bad today. The great news is that I no longer feel tired, nauseous, moody or withdrawn. I'm nearly back to normal and I can't begin to tell you how good that feels!

I will have a CT scan in one month to see how things look.

Yes, tomorrow is my last day and, although it will be no different from the past 5 weeks, I already feel a sense of freedom, renewal...and anxiety. I have to learn to live my life without the fear of this cancer returning. That's going to be tough. Maybe without the therapies in my face each day, I can focus much more on other things. Your prayers are still so very appreciated!

Aroma Fields Candles & Bath