New Tumors . . . New Chemo

New CT Scan Results

I went in to see my Oncologist this past Tuesday, September 28th to get the results of my CT scan and for another Oxaliplatin chemo infusion. As I had been experiencing unusual pain in my neck and felt a bit more fatigued than usual, I expected that the results would not be good. They weren't. The tumors that existed in my lungs are still there, some have grown larger AND I have 3 additional tumors . . . one in my neck, two in my abdomen.

My Oncologist took me off of the Oxaliplatin infusion treatments (which I've been having once a month for the past 9 months) as, apparently, they are no longer working. I'm tickled pink to be off that nasty stuff as the side effects were horrid. Beginning this coming Tuesday, I'm to go on another type of chemo called Abraxane. Doc says it's normally used for breast cancer but recent studies have proven it to be effective in the fight against pancreatic cancer as well. I sure hope so! Because of the fact that I've been on three different chemos now and this disease is still rearing it's ugly, demonic head...I'm losing hope. I'm glad, however, that my Oncologist hasn't given up!

As the pain in my neck gets worse each day; feeling like a knife stabbing into my neck with pain radiating up into my jaw and down into my lungs, I'm eager to begin this new chemo treatment. I'm also having problems with my larnyx as I sound very hoarse when I speak and it hurts in that area as well. At the time of my visit, my Oncologist didn't know what was causing that problem. I'm wondering if the neck tumor is pressing on my larnyx. Anyway...it hurts.

My Oncologist says that if the chemo doesn't work in shrinking the tumors, I'll have to have the one on my neck radiated. So...does that mean the other tumors will be left to grow? I have a feeling the answer is "yes". I don't want to reach this point! Dammit!

So, as I come to terms with the fact that this disease is progressing quicker now, I worry that I won't be around in a year's time. No fair! I have a lot I want to do! My children are taking this very hard. It is more difficult to watch my children suffer emotionally than it is for me to endure the physical pain from this disease. My brother and sister are worried sick, as well. I've always been the "hub" of my family since our Mother passed away in 1970. If my husband is stressed, he is not showing it. I continue to hear him say, "You're going to be just fine...you're going to live another 20 years". He's either in denial or he's hiding his concern in order to give me hope and support . . . but he's ALWAYS by my side with all I go through. Everyone handles their stress differently. I love my family SO much!

On a positive note . . . I'm hoping the new chemo does a great job and gets rid of the tumors! I have so many wonderful people praying for me and I appreciate every one. I'm working on a new afghan for Berlyn (my middle grand daughter) and still filling candle and soap orders. I'll be doing things as long as I possibly can!

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~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

The Cancer Returns

. . . Shattered Dreams

I was looking forward to getting my scheduled, routine CT scan out of the way so I could continue to go on and enjoy good health and glorious life. It was scheduled for January 13th. Since I felt pretty darn good, I had no reason to believe that it would be anything but great news.

About mid-November, my left hip began to hurt. This was nothing unusual as each winter season, a wee bit of arthritis in my joints (whether shoulder or hip) would temporarily ache. Normally, I could increase my movement (exercise, stretching, walking) and the pain and mobility would improve . . . but not this time. Maybe I was just getting older and it wasn't going to go away this time (so, I thought).

After having my CT scan on January 13th, I went in for my scheduled visit with my Oncologist on the 14th to get the results. He shared with me that, in reading the results of the CT scan, he was pretty positive the cancer had returned/metastasized and scheduled me for more tests. I returned on January 18th for a bone scan and a CT scan of the chest. . . and returned the next day to get the results.
Confirmed: I had tiny tumors throughout my lungs and a 2cm tumor in my hip bone. Hubby and I were devestated. Hope for being in the 20% group of pancreatic cancer survivors was gone. The barbaric whipple surgery and grueling follow up chemo and radiation treatments I had previously undergone were not my cure. I would now battle this disease until it took my life . . .

Radiation Thereapy:
The radiation therapy started on January 25th, just about the time I could no longer bare the hip pain. I couldn't sit longer than 10 minutes without the pain bringing tears to my eyes...and walking was very painful. I underwent 2 weeks (10 days) of radiation therapy to my left hip. By the 2nd treatment, the pain was better. The hardest part of this treatment was going up to the hospital each day as I was once again feeling like City of Hope has become my 2nd home again. The treatment ended February 5th and, though I still have some pain and walking is still a problem, the Radioly Oncologist told me that it will continue to improve.

Chemotherapy:
Oxaliplatin:
My first infusion of Oxaliplatin was on February 2nd. I'm given a 30 minute infusion of Zofran prior to this chemo to help with nausia. The infusion of the Oxaliplatin was painful. It lasts for two hours and about half way through, my arm felt like tiny cactus thorns were piercing the skin all the way up to the bend in my elbow. The pain from that is better but hasn't completely gone away. Because the most significant side effect of this chemo is sensitivity to cold, the nurses gave me heavy gloves to wear and a blanket when I left that night. I was to wrap the blanket around myself, brining it up to cover my mouth so I wouldn't breath cold air. Anyway, I looked like Darth Vader. For the following 5 days, it was a learning experience for hubby and I as to what things are cold and would cause pain to the touch. Touching the toothpate tube, walking on cold floors, touching tap water, pouring shampoo into the palm of the hand, grabbing the tub of butter out of the refrigerator (oh so much more!) . . . it's all like an electrical shock. One takes a lot for granted!! I had to heat my water to just above room temperature in order to drink it without pain. Warm water tastes gross! Another side effect I experienced was shock to my jaw every time I would eat or drink anything with flavor. OUCH!!!! After a week now, these side effects are beginning to diminish (thank goodness!). But, of course, I get the usual gut pain and diarrhea. I will go to City of Hope every three weeks for an infusion of Oxaliplatin and have to do this 4 times. My Oncologist said he would slow down the infusion (making it a 3 hour infusion rather than a two hour) so that it would be less painful and the side effects not so severe.

Xeloda:
Along with the Oxaliplatin infusion, I have to take 3 tablets of Xeloda chemo pills each morning and 2 at night. This I do for two weeks and I get the third week off. Prior to taking these pills, I have to take Zofran to ease the nauseousness.

Day By Day . . .
As the side effects wear off, this is doable. I can still perform normal, daily activites (though my hip still gives me problems). I'm certainly NOT at all pleased about having to take so many pills and that my body is, once again, being invaded with a poisonous chemical. Best case scenerio is that, when finished with this treatment, years will go by before the cancer returns. I take each day as it comes . . . and my hubby and children give me the ability to have the strength and courage I need to move forward with hope!

Aroma Fields Candles & Bath

Over My Dead Pancreas!

... Give Me More Health Problems...NOT!

Prior to beginning the radiation/chemo, which is the next phase of treatment, I met with the Radiologist Oncologist for a consultation.
When he shared with me that he was going to radiate my entire (remaining) pancreas which offers a guarantee that I would become a moderate to severe diabetic, I froze in my chair. Hell no! I put the treatment on hold while I took the time to talk with other doctors. Truly, in all the research I've done, I've never found any incident where the outcome was as drastic as what he was about to bestow upon me. Further, I was consistently finding information stating that radiation therapy was controversial; that it's benefits are so minimal that Great Britain had discontinued it's use for pancreatic cancer treatment.

I realize there are others in worse condition than I...those who would allow their pancreas to be fried and fed to the neighbors dog for a chance to live a few extra years. But what I'm discussing here is specific to my situation...someone who has been given the gift of life of a few more years OR, by the grace of God, may end up in the low percentage of survivors who live well beyond 5 years.

In meeting with my Oncology Surgeon, he shared that radiation therapy, in fact, not only offers minimal benefit but in some cases, can make things worse. He talked with the Radiation Oncologist and insisted that he did not want me to become diabetic, given the very high risk that this cancer will return and quality of life is a factor. He does believe that we should do all we can as it is a standard therapy for pancreatic cancer in the United States (which is much lacking in current research!!). So now the radiation will be isolated to the surgical sight of the pancreas only. This will offer a much, much lower risk of becoming diabetic.

I'll now take this therapy and it begins August 17th. Even though the statistics dictate that this cancer will return, thus, my prognosis isn't very good, there's a 20% chance that I could survive this and live a long life. The 20% group of survivors had radiation therapy...I'll follow the herd. I wouldn't want to end up with the cancer coming back and wondering "what if...". You know, that 20% group is there for a reason. I plan to be part of it!

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