Saturday, February 12, 2011

5 Months since last post...so sorry to all who continue to look for updates! Let me try to summarize the past 5 months!
I continued on the Carboplatin every three weeks...side effects got worse and worse...last dose was January 14th. We put the house on the market Sept 21st and closed on the sale November 30th! Bernie, I and the kids spent the weekend before Christmas in Aruba...5 days/4 nights...it was great! Christmas was wonderful; January was very busy, each weekend was something going on and then Friday, February 4th was my last day of work. I'm now officially on medical leave and it's time to rest!

Medical details. Carboplatin stopped working; scans done on Feb 1st show a 33% growth of the tumors being measured plus additional new tumor growth almost every where. Lungs, chest, liver abdomen. Seems like this cancer is just taking over my body. Also had fluid on the left lung which was hindering my breathing and causing pain. Fluid was removed on Tuesday, Feb 8th...definite benefit with better breathing but the pain after is horrible. first day was very painful as my lung expanded and still today the area they went in (through my back between my ribs) is still very sore. Fluid that was removed is being tested...Dr. believes its cancer but we'll see. I see the Onc on Thurs (Feb 17th) to discuss and hopefully decide on next steps. I signed documents for some further trials. 1st is one right at DF, testing the circulating cancer cells in blood to see if these may have different characteristics then the original cancer in regards to the HER2 receptor. 2nd id one where my tumors are sent out for further testing....remember triple negative means negative for the 3 receptors they have identified in breast cancer...ER, PR & HER2....there is a phase 2 trial where they are testing for a AR receptor..AR standing for Androgen(sp?)...a male hormone found in women. If my cancer is positive for this....they have a trial of a targeted chemo to try.
When we go on Thursday I'll know results of the fluid from my lungs and the circulating cancer cell test but the AR receptor takes 5 to 6 weeks....but I think we should know enough to make some decisions on what and when to start next treatment. I'll give anything a chance as long as I have some good days in between treatments....if any treatment knocks me out completely and I have no good times...then I'm done. I just want to feel good for a while and I haven't felt good since early Dec. Hoping this pain from the fluid drain goes away before we start something else but we'll figure that out on Thurs with the Dr. I guess!
I promise I will update this much more often now....thanks!

Monday Sept 13th - Quick Update

Just a quick update...weekend went well, took all my scheduled meds (Emend & Steroids) and nausea seemed under control although Sunday was pretty emotional...I guess the steroids are the cause! Today has been tough...trying to control the nausea on an as needed basis with Compazine and Ativan and having a tough time but I'll find my way though and experiment with what works best. Trying to get some work done from home but not being very successful. They set me up an office in the TV room for me to use during the day but I haven't got the energy to move down there from my comfortable couch yet! Hopefully later in the day I will! that's all for now!

September 11, 2010 - Day after new Chemo Treatmant

Morning all! It's been 3 months since last post...sorry been very busy! Summary view of what has occurred in past 3 months: We moved into Mom & Dad's house, celebrated Caitlin Graduation with a all day party(it was fun!), continue to finalize/cleanup our house (last few To Do's this weekend) Hope to have on the market by end of next week. Sean now back at school...he is now a junior at UNH. from the medical side...I continued my weekly treatments though August 10th, then had my normal every 8 week CT scan at the end of August. It was then seen hat the cancer had started to outwit the chemo and the cancer ha begun to grow again. I new it was coming...almost a full year on same chemo is not the norm, so I was lucky...it worked for me almost a full year!

So now I am moving on to a different/stronger Chemo...it's called Carboplatin. It's a platinum based chemo which is showing good results with my type of breast cancer. I am actually in a trial. But trial is only to gather data on effectiveness of platinum with Triple negative Breast Cancer...here is the website www.clinicaltrials.gov/ct2/show/NCT00483223.
So my hope is the early reports of this helping TN will help me but more important they are gathering data to hopefully be able to treat future TN patients correctly. Remember back in 2007, they new my cancer was TN, but thee only treatment available was the standard BC treatment of A/C and then taxol. We know know that failed for me. It would be good to know before I go that they can come up with correct treatment for TN from the beginning!

Back to where I am now....yesterday was my first infusion on carboplatin. So far OK. My appointment yesterday was at 4:00 and we were on our way home by 5:30. No more waiting around like last infusions. Some of the premeds for this I take via pill form which cuts the time down. I take a steroid pill and emend(all to prevent nausea) I then get an IV of I think Aloxi which is another anti nausea med and then the carboplatin it self witch is infused over one hour...then I'm ready to go! Alot different since last treatment regiment had me getting benerdryl via IV and knocked me out....I called it my Friday afternoon nap! Not this time...steroids do the exact opposition! That's ok...they suggested I take ativan and my muscle relaxers to go to bed to help counteract the steroids and they were right! When we got home yesterday I was awake and ok to have dinner (both kids home...so as nice to have a family dinner together again...but yes it was "take-out"...my wasn't home to cook!). About 8pm I took my pills and was out like a light before 9. Slept great and was up in moving around 8:30 this morning! I continue to take the steroids and emend each day and see how it works. A you have already probably determined...this carboplatin has a very high nausea/vomiting side effect and all these meds to to help prevent. We were laughing last night about this and Bernie wants be to ask for medical marijuana!!!! Not sure if he wants it for me or himself!!!

So I am feeling pretty good...no nausea as of yet and seems like normal Saturday so far! I am planning on not being in the office on Monday and Tuesday just so I see how this goes and that I can function when I no longer take these meds, but I will be online doing what I can from home!

To end...so far so good...this treatment seems doable!!!

Caitlin Did it!!!!

Graduation is over!! We had a wonderful day! Weather was great and so was the ceremony! Here's a link to masslive coverage of the graduation. Some nice photos...none of us but nice!
http://www.masslive.com/news/index.ssf/2010/05/westfield_state_college_commen.html
All and all things worked out good. We headed out to Westfield on Friday afternoon. Spent the night at hotel in Springfield and were up bright and early on Saturday morning. Arrived 2 hours prior to ceremony and only seats available were in back, but they showed the ceremony on all the big screens all over campus so you could see the stage area and sound was fine you heard everything no matter where you were seated! Sean actually spent Friday night on campus with Caitlin and her friends! I gave in and let him celebrate with her and she and her friends were very happy to have him there! I thought...they are growing up and can get along...but...Caitlin and her friends continued celebrating with Mimosa's on Saturday morning prior to ceremony so Sean and Caitlin drove home together (with Sean driving!). We all net at the Cheesecake Factory in Burlington for dinner and when they arrived...they were their same old selves...Caitlin complaining about his driving and Sean complaining about her bitching at him!!! We'll I'll take one night at least! Ceremony was very relaxed and we were able to have Dad watch on TV inside Caitlin's apartment with Sean instead on sitting for 3 hours on this folding chairs. According to Dad, Sean's the one that took a nap during the ceremony not him!!! Long day for Dad and even longer for Mom...but I'm so glad they were there!
I'll post some pictures once I find the usb to download them from my camera!
Signing off now...Holly's confirmation is today, Caitlin is her sponsor and we are suppose to be at my brothers around 1:00pm

Sunday, May 16, 2010

Good Morning! Another treatment over! Friday's treatment really knocked me out this week! I think it might have something to do with which drugs where given when. My normal infusion nurse was off yesterday (her son was graduating from law school!). I normally get zantax, benedryl, then chemo. This week I got benedryl, zantax, then chemo. I was out like a light within 15 min of the infusion starting. We were home by 7:00pm this week and I went straight to bed and didn't move until 9:30am yesterday morning. If you ignore the half hour of awake time on the way home from Boston...I slept 16 1/2 hours. And guess what...I was tied all day! Maybe I slept toooo much!!!! Anyways, I fell better today, just finished up some work stuff and going to try and get more done around the house today. We're starting to pack everything up...Bernie has been returning all the things we are finding that we have "borrowed" from people and trying to get the yard cleaned up so the inside is mine! Bernie has had a busy weekend. Yesterday he went up to UNH to get Sean settled with a few things; his car having some issues, he needed some groceries, etc and now today he is taking a ride out to see Caitlin to get some of her belongings. Caitlin must be out of her apartment next Saturday, so our hope is one car load today and then both our car and Caitlin's next week will do it! Sean finishing up his last finals this week but since he's in an apartment he does not need to move out until end of June so we have some time with him. Still not sure about Sean's living arrangements next year although he told his father about an apartment he and his friends found; I guess it's on campus and they'll be 4 of them in one apartment for $450 per month. We'll he and I need to discuss the details but I guess $100 less per month is ok...let's hope it includes utilities and it would be a bargain!

This week is a little different then norm....I will have my treatment on Thursday this week...appointment for 4:15pm (open until 8:00pm on Thursday), then I'll rest during the day on Friday and we'll head out to Westfield late Friday afternoon. Spending the night at a hotel out there since graduation starts at 10:30Am, but to get a good seat we'll need to be on campus by 9:00am at the latest!

In less then one week, Caitlin will be a college grad! So let's think optimistically....back in August 09 when I was diagnosed stage IV and she was packing up to return to college, I didn't know if I would be here for her graduation...now 8 months later I'm here and in a better position...the cancer is smaller then it was back then and I still have a great quality of life!!!

I'll end this week with a quote from Mother Teresa...

Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is bliss, taste it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.-- Mother Teresa

To my children for Mother's Day 2010

Caitlin & Sean,
It's hard to believe that in one month, both my children will be 20 something!!! I'm not old enough to have children your age. LOL!!! No more babies or even teenagers...you are both young adults now and you always make me proud!
This is for you!
Love, Mom

I'm Back! Saturday, May 8, 2010

WOW….it’s been almost 4 months since I lasted posted! Sorry for that but my mind was just not in to it! I haven’t felt like I really knew what was happening with me so writing and updating everyone was something I just felt I couldn’t do. But…things are much better now and I’m back!

As you all know, I’m a detailed and CONTROLLING person and when I don’t feel like I have control of myself and what is going on in my life….I’m not an easy person to live with!

Long story on the medical side, but in summary, I now have a new oncologist who is wonderful and willing to give me the details I need to understand what is going on. The other doctor was ok, she helped get me to this point, but did not seem to be able to give me the details and information I needed. This new doctor is a young girl, explains everything that is going on in my body and gives me the information I need of potential next steps so I have can have a vision of the remainder of my life for more then just 8 weeks at a time!

I had my first CT result meeting with this new onc. on Thursday this week and for the first time in 8 months; I actually saw the CT pictures and the tumors. It was amazing and I was able to see the tumors are small in comparison to the size of my lungs and chest! It’s hard to visualize the scope by just reading results and comments about how measurements such as 1.5 mm compares to the overall size of your body and organs. Also…current treatment continues to do its job! I’m on same treatment for another 8 weeks which takes me to the end of June!

What I have found out over the past four months, although there are a number of tumors within my chest and lungs, the trial I am on is targeting only 4 tumors. At each CT scan, the largest dimension of these 4 are totaled up and compared to prior. If stable or decreasing, I can stay in the trial, if any increase I’m out. So, at initial CT scan in early September 09, total was 10.9 cm, early Nov 09 went to 7.1cm, then at end of Dec 09 they were 6.7cm. The March 10 scan showed they were stable at 6.7cm again, but the largest of the tumors being watched decreased and it was the smaller ones which had increased. Now, the scan I had on Tuesday, May 4th shows a total of 6.5cm….largest still continues to decrease with some of the smaller ones increasing slightly again….but net shows another decrease which is great. I was just hoping for another stable but I’ll take a minus 0.2 cm!!! So we continue with same treatment for another 8 weeks but I can change some treatment dates to accommodate our busy next couple of months!

Caitlin is graduating on Saturday, May 22nd! Yes…she did it!!!! We are so proud of her! Since her graduation is early on Saturday, 10:30 Am and we are 2 hours away, we are going out Friday night and staying at a hotel so we are closer. That week I will have my treatment of Thursday afternoon and take Friday off work to rest so that we can drive out Friday night and hopefully I’ll be ok on Saturday morning. I should be, Sunday’s are normally ok, not much energy but ok! Then I will also have my treatment on a Thursday the week before Caitlin’s Party which is the first weekend in June!

Caitlin is very busy finishing up all her finals and senior papers, her internship at Westfield Council of Aging and she had her last day of work at the Westfield YMCA yesterday. One more week of real school for her, then it’s party time. The entire week before graduation is “Senior Week” and they have scheduled activities each day and night! Sean is doing good also…finishing up his Sophomore year at UNH. Finals week is next week for him also I believe. Still trying to finalize his next years housing arrangements. He is definitely not staying in the apartment he is in now, but still unsure where he will live next year. He is on the housing waiting list for the school…I so hope he gets back into on-campus housing…this rent, utility bills and ensuring he has food is not fun. I rather pay more for room & board and know he has everything he needs!!

Gotta go for now! Bernie and I heading to foxwoods tomorrow afternoon. We are going to the Hall and Oats concert and spending the night down there! Attached here is a movie I made for Caitlin and sent to her….my baby girl has grown up to me a wonderful young woman and we are very proud of her!