Johns Hopkins

Well it's certainly been awhile since I posted last! I hope everyone is doing OK, better than OK! So I'll give you the short story: my mom, Chrissy, and I are waiting for my Dad to come out of his 6 hr surgery! Surgery can you believe it? We finally made it here. It's been almost a year since my Dad was diagnosed and we learned what "unresectable" meant. I'm happy to say that he is doing OK from there reports we've gotten. We got the news a few hours ago that they were able to remove "the specimen." I told her that that was an appropriate name and we also refer to it as "the alien." Haha. I know that it's going to be a long road to recovery and that it will take a lot of time for my Dad to get back on his feet but I am very grateful in this moment. I pray that my Dad can pull through the recovery without any complications so he can hear the words "Your tumor's been removed!" Ohhh dearrrr mere, it's been a long day! We got up at 4am and I got about one hour of sleep between sleeping in a hotel and my mom's snoring. 🤔🤔🤔 (Me contemplating suffocating her with a pillow last night. Lol) Also I just received good news and that is that Costco is sponsoring our Purplelight PANCAN with a small in-kind food donation in April! (I'm happy because I got turned down by 2 Starbucks, Panera Bread, Whole Foods, and some other local businesses for food donations so this is a win, albeit a small one!) Well I hope to hear news from all of you as well. Let me know how you are doing. 

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Helen Marshall, Susan J threw a punch at your cancer.
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Awesome!!! So glad to hear that he is now able to, and is having surgery!!! Prayers from Michigan!!!
Your dad is following almost the exact same path as my brother. My brother was actually opened up on the operating table at our local community hospital, and the surgeon closed him and said it was beyond his scope to do the surgery. My brother then had surgery at Johns Hopkins and they were confident that everything was removed. My brother then had six months of chemo, just finished, and had his first clear scan a month ago. The chemo kicked his butt, but he made it, is now done, and getting on with life. His odds went up 20 - 30% five year survival now. And new things are being discovered every day.
Chemo is really hard on them and more than they let on I think. I think back to the first round of chemo and it's just so sad watching someone you love go through that. You feel so helpless and it's just such an abnormal experience the first time. And they are super-drained afterwards. It's a terrible time but a necessary one I guess. I am glad your brother is doing OK. 20-30% 5 year survival rate is amazing, up from the 7% of pancreatic cancer is truly a blessing. I remember thinking my Dad could be dead next year or in months and to know they will be around longer is so amazing to know. Life is never guaranteed every day but with the grim diagnosis of PC it is a milestone to be celebrated. Life is so precious you know!!!? Some people don't realize it and never do so I guess this is something we all know that strengthens a special bond between us. There was a study realized in Nature earlier this month about 4 subtypes of pancreatic adenocarcinoma being found. You should check it out. I am a grateful for the researchers working on this disease since I feel it's been neglected for a long time. Hugs to you and all of your family.
Marian I am so happy to hear again your brother is doing so well I am thanking God and praying for you, Maddie and your brother's continued, complete healing in Jesus name Amen.. big hugs and love and always prayers Sabina
Karen I am so glad he is getting the surgery he needs and I am praying for his full recovery to complete healthy healing in Jesus name Amen.. Sweetie its so good to hear from you. hugs and love and always prayers Sabina
Hi Karen, hope your anxiety will be reduced once the surgeon comes out to tell you and your Mom that they got the alien bugger out of your Dad and that they're fixing Dad up for further treatments and that you ladies can go visit him in a few hours or less. I'm sure he's glad they you're all there for him. Prayers for a speedy recovery.

As far as your dear ole Mom, before you use a pillow, might I suggest she see a pulmonary doctor about a sleep test to see if she has sleep apnea and needs a CPAP machine to reduce the snoring and give her more restful sleep?
MGBY all,
Sabina, Karen like this comment
Amazing, you have made my day. Found your contemplation funny but know the feeling. Prayers continue to be with you all. I will be singing "Halleujah" for the next week.
How did he get to the point that they could do surgery? I always thought "unresectable" meant just that. What did the JH doctors see that others didn't? Was it ever classified Stage 4?
Yup Susan said it better than I ever could! His surgeon at Shadyside said that very few people go from "unresectable" to "resectable" but they are seeing more cases like this since the addition of the Gemzar and Abraxane that shrink the tumor. My Dad's tumor shrunk 30% after his chemo, which made him eligible for the surgery but then after having a bad GI bleed episode and having a CT scan showing that the tumor had not shrunk away from the artery they referred him to Johns Hopkins for NanoKnife surgery aka electroporation. With that type of surgery they will always try to remove the tumor first with a Whipple if they can. We didn't know what the outcome of the surgery would be since they didn't know until they cut him open. Basically it's a case by case exploratory surgery that JH was willing to do and Shadyside was not. The main reason being because JH did the electroporation while if we had somehow urged the surgeon at Shadyside they wouldn't be able to do that and would just have to sew him up and basically we would have recovery time and still be in the same boat. Dr Wolfgang was amazing at JH. Wow he's down to earth and willing to answer all your stupid questions. He said the surgery was difficult and challenging and they did treat his artery after removing the tumor that had snuggled up against it with the electroporation. My Dad's tumor was Stage 3 but in 2 lymph nodes so they believe it never metastasized. Although they never really focused on staging his cancer throughout his diagnosis and treatment which I thought wasn't the norm. It was always done as T3 L2 M0 which means the tumor size was large, 2 lymph nodes were involved, and they didn't believe there to be a metastasis. Unfortunately since the tumor was so large Dr. Wolfgang said that he does not have much of a functional pancreas left because of where the tumor died off from chemo. He will be taking Creon which is wildly expensive ($800 per bottle with insurance!!!) Hopefully we will be able to work our way through affording that. There are a few options like adding an additional prescription plan and etc.
Just be aware that if your Dad doesn't have much of a functional pancreas remaining, diabetes may loom in his furure. My husband was just on creon for enzyme supplementation; his pancreas had no trouble producing insulin after the Whipple, even though we were warned about this. His surgery was in 2010 but diabetes eventually did catch up to him in 2013. His blood sugar was over 800: diabetic coma territory! Thanks God he listened to his own body and brought himself to the hospital while I was at work......If you Dad starts feeling really listless (more than usual) and lightheaded - get him to an emergency room.
It is all very manageable. We found the enzymes so expensive that we ended up ordering from Canada Drugs for years. Now, my husband is covered by the World Trade Center fund (we were both working downtown within two blocks of the attacks).
Congratulations on "qualifying" for the surgery!!
XOXO Sue💜💪🏽
Probably it was stage 3 or below (non-metaststic). These days they give neo-adjuvant therapy (chemotherapy prior to surgery) in an attempt to shrink the tumor prior to removal. This enhances the possibility of getting clear surgical margins. Neo-adjuvant chemo is also very useful if the tumor is abutting a major vein or artery: rather than risk the artery they shrink the tumor so that it no longers abuts the artery, and can be more easily removed.
Sadly, surgery is never indicated for metastatic (Stage 4) cancer, because the goal of surgery is to remove the tumor before it has a chance to metastasize.
Hope you and Nana are doing well!
XOXO Sue💜💪🏽
Karen likes this comment
To think that only six months ago you thought you were about to lose your Dad......and here you are at JH with a resectable tumor. What an awesome turn around!
My husband had the Whipple, and it DOES take a while to recover from the surgery. Your Dad may need pancreatic enzymes for digestion, and there are some other adjustments he will need to make (keep up the calories, but do it in small frequent meals) - but it is all do-able.
I am so happy for your family!
XOXO Sue💜💪🏽
Susan!! I know! Thank you for your posts and comments during this whole time! Wow, it's been great to talk to all of you and especially someone who knows the path all too well. My Dad is doing good and recovering OK. He is doing shots of chicken broth after doing a "no-no" and eating 1 cup of soup all at once. After that he got super-nauseated and threw-up a little. Mild oversight from the doctor's notes there I guess. All patients after a Whipple should be on "Limited Clear Liquids!!" Let it be known. Yesterday I made the trip back from Baltimore since I have a rather stressful exam on Monday. I wanted to stay but since he is doing well, I think my sister, Chrissy and my Mom will do a good job overseeing everything. My Mom a little too well since she is an ex-nurse and knows too much! Haha. The last couple days he was super itchy from the Fentanyl and he was having blurred vision. They checked that out and it seems to be just a side-effect; now he is less confused and doing 4 walks around the hospital "block" hall so all is well!!! I'm so happy! God is good! AND SO ARE ALL OF YOU!!!
Susan J likes this comment
Prayers for your dad to have a full and speedy recovery!! My son is doing ok for now!! Had a rough Christmas and New Years, but thankful things are back to our new normal. Glad to hear from you!! Hugs and Prayers, Lenae
Karen likes this comment
Yeah! Wonderful news! Praying all goes well.
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Karen's Dad

May 1, 2017

Vital Info


May 5, 2015

Cambridge Springs, Pennsylvania 16403

May 1, 2017

Cancer Info

Pancreas Cancer


April 17, 2015

Stage 3

2.1 - 3.0 cm


I hate the pancreas! Who thinks about the pancreas??

Cherish every moment of your life and being around your loved ones. Have patience in all you do especially with your family (sometimes we are the least patient with them because we know eventually they will forgive us!)

Eat your own cruciferous veggies! They can help prevent pancreatic cancer.

Not to organs, arteries are involved: hepatic and celiac axis

Field and Stream gift certificates for my Dad!

Primary: Erie Regional Cancer Center Surgery consultation: Hillman Cancer Center Surgery: John Hopkins Baltimore

Walk your puppies. Dogs give me a happiness that humans cannot. If you have dogs you understand. If you don't, you have been missing out.

Take a deep breath and if you can't take a deep breath, find something to laugh about!

Prior to stent: extreme nausea, fatigue, weight loss (15 lbs), back pain, jaundice, loss of appetite (unable to finish meals), abdominal pain, needing to take several anti-acids daily Present: back pain, feeling easily full, abdominal pain, increased appetite for potato pancakes!!!!!!

Extreme fatigue, some dry heaving, hair loss, neutropenia


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