Hospital Update!

Here's a quick update, I will post more details and updates by later tomorrow with hopefully more news and progress on the pain.

Monday

After Mom was in so much pain over the weekend, she went to see the oconologist on Monday morning for a pain consult. After the past 1.5 weeks of her testing different recommendations of pain medicine from the home and three visits to the ER, the doctor decided and we all agreed that she should go to the hospital in Omaha (she's at Immanuel Hospital - this is where her team of ocologists practice out of) so they could monitor the pain more closely and figure out exactly what could work to stop the pain. They thought it would take about 3 days. This was all a good thing & not to be too concerned with as this was the best for mom. The pain was getting to be too much, too often. The result was to understand the right balance of pain medicine that works for her. Reminder that the Fentanyl pain patch has been managing her pain quite well for the past 5 months until the last few weeks.

Tuesday

After 24 hours into the pain meds, taking off her pain patch, slowly adding pain medicine, she was still in pain. Everyone was frustrated, including Mom. The balance of how much pain medicine they give her is important as they need to understand at what level it is managed. Then, she can manage that at home & get stronger to see what's next. Part of where they believe the most severe pain in her back, chest, and other areas is coming from pressure from the intestine pressing the tumors on her liver. They are trying to relieve the bowel backup which could help a lot. They did do an X-ray of her abdomen to be sure there was backup & to confirm it was nothing else except that.

Wednesday

Now today, she is still in pain, she's had some relief, but still doesn't seem to be under control. We're still waiting for the doctor today to see how she thinks mom is doing and what else they can do. They did do another X-ray on her lower back and side to see if they could see anything else that could be causing the pain, we're waiting to hear.

Prayers, thoughts, love, positive thoughts are needed. She isn't up for visitors right now, sleepy and so tired of all of this pain. Tara, Tyler and I (Travis will likely be coming soon) are here with them today. We are all a little worried, but hoping they can figure out the pain and she can go home soon and be more comfortable.

Thanks you for all the calls, texts, love you are all sending, and what I know are lots more prayers and thoughts we don't even know about. She's a strong woman as you all know.

More to come...

5 Month Recap

Sorry again for the lack of updates, I know many of you come to see if I posted an update; I hope to keep this up a few extra times these next few weeks/months as a lot of changes / updates will occur. I'm going to do a quick recap of the last few months first, and then will provide the update on what's next for mom.

JANUARY - MARCH

First off, from January thru the end of March, Mom has been pretty good. She's took the single agent chemotherapy treatment for about 3 months and did really well with the very few side effects. Her pain (which she's been having since last winter) was manageable for a good part of 2012 with a pain patch, Fentanyl. She's been slowly over time having to increase the patch level, but overall has been managing. At the end of March another scan was done to see how the disease was progressing, it had progressed, not too much, again to be expected (since she was only doing a single agent treatment). This was the time for her body to gain some strength to hopefully try again at the stronger chemotherapy. I would add that her & Tim took a great trip to California in February, and Mom did get the chance to feel normal (or her normal) for a few months; it was really like she was my old Mom again.

APRIL - MAY

Starting in April, she tried again the same treatment (CPT-11 & Erbitux for those keeping track) that she'd been on last summer until the side effects became too harsh. The good thing about this treatment was that the disease had not progressed on this chemotherapy so a good chance this treatment would work IF she could handle the side effects.  So, she tried it. She took 2 treatments (on a very low dose) and by the second dose, slightly increased, it ended up being too much, she was nauseated, her blood counts so low, that it didn't make sense to continue, once again, the side effects are outweighing the benefits. This brings you pretty much up-to-date thru mid-May.

LAST 2 WEEKS

The doctors decided to check progression of the disease before potentially trying another chemotherapy (her choice to keep trying) so she had another scan last week. We received the results on Tues, the disease has progressed, the tumors have grown in her lymph-nodes and liver. Again, as expected since she's only had 2 treatments in the last 2 months. The worst part of all that is going on is her pain. The doctors can't figure out how to get that under control. She's been in the ER three times in the last week trying to (hopefully, or really not?) find something else that could be fixed. It's very strange how the pain comes, it's terrible for her, and then it goes without a remedy. Just frustrating. Mom and Tim have been through a lot this last week. Many of you know that Tim's mother, Bern Sueper, passed away on Saturday (funeral was today). All of this with his mom and then Sharon not doing well; it's been rough for him as well. 

Today, hopefully, Tim (& all) got to celebrate his mom's (Grandma Sueper) life and this weekend we'll celebrate all together my brother's marriage to Shere Rath. All of the family is back and will be a nice weekend together.

Once again, thanks for all of your prayers, thoughts, concerns, and how wonderful you are to care and lend your help for anything Sharon & Tim need.

Scan Results + Next Steps

Last week, mom had another scan to check progress of the tumors.  She received the scan results today at her appoint. The results were as expected, the tumors have grown (not all of them, but a fair number of them) so it shows with a strong indication that she should not continue on the treatment she's been doing since the end of September.

A little background as it's been a few months since I last updated here:  It has been a rough few months for my mom. She has been so strong, pushing through, adjusting everything in her life to fight this. When they changed her treatment at the end of September, they tried a more aggressive mixture (recommendation from the Cancer Treatment Centers of America), but thought Mom could handle it.  But, it didn't work, the treatment plan (see last update) made her white blood count dropped so low she was in the emergency room a few times around Columbus Day weekend for fear of infection as she had a spiked fever multiple times in about 3-4 days. Very rough few weeks. She was final able to continue treatment on Nov 7th (having over a month break so she & her immune system could try to recover and become a little stronger). At this point, they tried a much lower dose that removed one of the drugs (5-FU pill vs. infusion, for those that are keeping track) and she continued w/ just the CPT-11 & Avastin every 3 weeks since then. So, after very sporadic treatment, the results were not surprising, however, still not what we'd have hoped.

So, what's next - The doctor said it's really Mom's choice.  She can continue with another round of treatment (single agent, only 1 drug), this would be every other week which would be, Erbitux (this causes the dry-skin or red-rash acne like symptoms) and diarrhea.  This drug in combination w/ CPT-11 was what she was taking from May - August this year when the side effects (namely the diarrhea) was so harsh, they stopped the treatment. But, that treatment was working, quite well based on the scan results in August.

She can also choose to not continue treatment. They would manage any symptoms from the cancer (quite well the doctor explained; almost everything can be controlled except fatigue).

She will not be doing treatment until at the least January 3rd.  Because we know the side effects will only contribute to bad days, this makes the most sense so ensure she feels good (if not almost great) for the holidays.

I believe that Mom has decided to at least try the modified treatment again to see how she can tolerate the side effects.  The plan for now is just take it day-by-day and see if the side effects from the chemotherapy are worth continuing.  The doctors say that the likelihood of the treatment working (because it's only a single agent), is about 50/50, but it could work to keep the tumors stable for at least a little while.  The balance of the good days will determine whether it will be worth it for her to continue.

We are planning a memorable Christmas. And, as you can probably imagine, we're asking Santa (really, God) for a miracle. As always, which we know you always do, please keep her in your prayers. 

It's really incredible to know so many people are caring and would, at a drop of hat, help if there was anything she or Tim needs. For now, wishing them Merry Christmas and prayers for careful consideration on making the right decision and being at peace with whatever that turns out to be.

Update on CTCA Visit

Just wanted to provide a quick update about our experience at Cancer Treatment Centers of America (CTCA).  (see previous post about info on this hospital). Overall, it was a very, very overwhelming week for Mom. Lots of information, plans, ideas, and next steps. Just need to take it one day at a time... She hasn't had the greatest week here, a lot of pain on her right side and lower chest area, but the doctors have some ideas to work on this too.  Keep Sharon in your prayers for a successful treatment w/ minimal side effects so fighting this will be just a little easier.

Results of the CT Scan
Overall good news, the CT scan showed that the liaisons in her liver are stable. No change. And based on her not having chemo for 3 weeks and missing a few treatments over the last month because of the side effects.  This is really good news.  It means that the treatment was working and has stabilize the progression of the disease. All good, not great, but still very good.  The one piece of bad news is that back in December 2010 (or before), there are small additional tumors that are in the lining of the abdomen area. This was not good news, but since they have been there for awhile, it wasn't as big of a deal. Just would have been nice if the oncologists that has been reviewing her scans (3 of the previous ones) would have told us.  Basically this new news does help explain some of the phantom pains she has been experienced off & on in her side/stomach/chest as a possible irritant over the past 6 months.

Results of her Blood/Lab Work
Overall, she is deficient in a number of areas - likely due to the diarrhea that she has had for over 4+ weeks.  That has started to resolve because chemo was paused, but overall her system is deficient in a no. of areas - potassium, magnesium, & protein to name a few that need to be corrected.  Once these are corrected, she will likely start feeling much better than she has been for the last month or so. She will be taking a number of different supplements to increase and hopefully over the next week these levels will improve.

Chemotherapy treatment
Chemotherapy treatment began again on Thursday morning.  She will received one of the same drugs as she was previous - CPT-11 and they are adding back to her regimen Avastin, plus she will be taking a pill form of the 5-FU (the fanny pack she used to get last year).  This pill, Xeloda, she will be taking 2x, 14 days, then off for 7 days, and back on. She will be getting the infusion treatment every 3 weeks (one treatment in Columbus & then back to CTCA for the infusion treatment every 6 weeks).

Other Supplements / Nutrition
One of the reasons we decided to visit CTCA is because of their team approach and looking at all components of what Mom is eating, taking, and ensure she is building her immune system so when the chemo-treatment needs to be given stronger/weaker, she can take it.  They have given her a few options of supplements she can take to help with the side effects and the overall health and effectiveness for the chemo-therapies.  Nutritionally, they are focused on her getting the calories and amount of protein necessary to keep her strength and immune system in good health. This will not be easy especially without an appetite. Again, lots more info on nutrition that can help with diarrhea and good foods to help fight the cancer.  Far too much info to list here.

Overall GI Health
Besides trying to implement some of the nutrition & supplements, she meet with a GI doctor (gastroenterologist) on Thursday afternoon. This doctor made some great recommendations about her overall GI health.  He was an amazing person that was very empathetic to Mom and her side effects; explaining all of the ideas and ways she can get better overall so she's strong to fight the disease. It was refreshing.

What's Next
And, there are other alternative treatments they discussed briefly with us that she can try to see if it can help with her overall anxiety, stress-levels, and quality of life.  Anything you all can think of to help her being just a little happier and giving her support & smiles will be helpful over these coming weeks.

Overall, lots of changes she can make; and just taking it one day at a time is the plan.  Add one new thing this week, another next week so it's not so overwhelming. Keep her in your prayers as she keeps going day-to-day and fighting!

Visiting Cancer Treatment Centers of America

Just looking for a few extra prayers this week. Sharon will be visiting Cancer Treatment Centers of America in Chicago (Zion, IL) this week.  We are looking for a 2nd opinion and just a fresh set of eyes. We thought it was time for a total evaluation looking not only at the chemotherapy treatment and results, but Mom's overall immune system. The goal is to get her stronger to be able to continue chemotherapy treatment.

After over a month of Mom dealing with very harsh side effects that she couldn't get under control, the decision was made that she would need to change her treatment to another chemotherapy mixture because of the side effects.  For those of you that have dealt with cancer treatments, the last thing you want to do is change the treatment because of side effects; you only want to change because the treatment has developed immunity to the drugs so you need to switch it up.  As she is at a crossroads for what to do next, we searched out different hospitals and approaches, and ultimately decided that Cancer Treatment Centers of America (CTCA) was the right choice.  They take a slightly different approach having her visit a team of doctors and specialists.  She will visit an oncologist, gastroenterologist, and a general physician to look at all of the pills and different drugs she is taking to work thru the side effects.  She will also have a Naturopathic and Nutrition consult as well as a Mind/Body discussion for a look at some of the alternative medicine techniques to help with the side effects.  Overall, we are cautiously optimistic, but relieved for her to at least a complete evaluation to give her confidence with her current oncology team if nothing else.

Monday's appointments --
Today, she started with some intro appointments, history reviews and tests. Overall, a pretty easy day, and a very nice, courteous team that is eager, helpful, and making this process as least seem easy & relaxed.

More to come in the next few days, I will be sure to update as we go along this week.

Thank you for all that you do for my mom, in mind, spirit, thoughts, prayers, love and support. She appreciates it, we all appreciate it!

Treatments & Side Effects

Hi all,

Not sure how many of you have been coming back here looking for an update. Sorry for the lage in adding new info how Mom is doing.  My last update explained that following Tara's wedding Mom would start a new treatment regimen at the beginning of May.  This was not an easy decision as this treatment would add more side effects on top of the ones she's already dealing with (tiredness, hair loss/thinning, lack of energy, etc). This treatment was the start of an almost all new chemotherapy treatment mixture (with the exception of one drug). She is now going to chemotherapy every week with one week being about 5-6 hour process and the second week being about 3-4 hours.

She has had one scan / check on her progress at the end of July, and what we hoped and prayed was delivered. The new treatment made a pretty dramatic change to the size and tumors - almost of of the tumors were reduced in size and there were fewer tumors. Her spleen still is enlarged which is concerning, but the doctors explain that with the liver pushing on the spleen this is to be expected.

SIDE EFFECTS:
So this is the part that is not fun and makes for long days and weeks. With Mom's last treatment, she could predict how she was going to feel when. She knew when the good days and bad days would come. This treatment seems to be unpredictable and she can have a good week or day but those seem to be sporadic at least lately far and few between.  This new treatment added - continued hair loss/thinning, dry/itchy skin and some redness on her arms, face, and legs has resulted (but comes & goes), and diarrhea. However, she is pushing through the best that she can and I am almost certain not really telling us how bad it is. But, I know my Mom is strong and if anyone can handle all of this to fight this disease, it's her.

With all of the prayers and support, I'm asking for more.  Keep sending all that you have! And, next time you see her, be sure to tell her how strong she is :). She could probably use a few encouraging words & a laugh.

Long Overdue Thank You Note from Tim & Sharon

Hi there -
Sorry for the over-due time to post this Thank You note from Mom & Tim on the blog. A version of this was posted in the newspaper and in the church bulletin, but I forgot to post this here. Next post will be an update on how Mom's doing.

Words cannot express the gratitude that Tim & I feel after the outpouring of support we received for at the benefit. Thank you to the hundreds of people that donated items, attended the event, bid on items, bought raffle tickets, sent cards, gave money, helped organize and work the event. It’s amazing all of the people giving their valuable time and money to help us. The overwhelming support I feel cannot be matched – I feel so blessed to have so many people in our lives that care enough to show this much support. The event and outpouring of support was just what I need to continue with chemotherapy treatment and fight this disease. You all have done so much; I can’t explain how thankful and grateful we are for everything you have done to help in so many ways!
Thank you, Sharon (& Tim)