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bambi99d's Message Board Messages

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Thanks for the reply. It's interesting because I took my Mother to Johns Hopkins in March of 2011 to their clinic. When I brought up the NanoKnife they completely disregarded it and blew it off. She went to have the procedure at another hospital. It's a bit ironic they are now using it for PC 5 years later. 

Are they performing the NanoKnife at Johns Hopkins now? 

It’s very scary. My sister and I don’t know what to do about screening. There’s not a reliable cancer screening right now. The only thing is a CT scan or blood test to test for CA-19. Both are not very accurate since the tumor often does not show up on a CT scan until it’s advanced. I pray within the next 10 years they discover an accurate screening test. Johns Hopkins has a family tumor registry and they offer genetic counseling.

 

http://pathology.jhu.edu/PANCREAS/nfptr/index.php

 

 

My Mom was not a drinker, but she did smoke. She also had type 2 diabetes. She got it at age 50. 5 years later so got P.C. I don’t think that’s a coincidence. She was never obese, but was overweight (maybe 20 -30lbs) in her 40’s. Once we got diabetes she watched her diet like hawk and started exercising. She looked and felt great- then she got P.C out of the blue.

 

Looking back now, she did have 3 of the risk factors of P.C. However, there are so many people out there that have all the risk factors and never get P.C!

 

Was your Mom a drinker and/or smoker? My sister and I both do not smoke and have never smoked, which I hope helps our chances of not getting it. 

Laura,

My heart breaks for you. You’ve been through so much trauma in a very short amount of time. I’m your age and my Mom was 56 when diagnosed and 57 when she passed. She had Stage III locally advanced P.C in the head of the pancreas without an distant spread.

I’m not a medical professional but it sounds like the cancer was effecting all of your mothers systems. From the mountains of research I’ve done this is common with P.C. P.C patients often do not pass from the cancer but all the complications the cancer causes.

Your Mom seems to have had a lot of chemo in short amount of time. 3 days in a row is a lot. On the last round of chemo my Mom had it was two days in a row – that was the beginning of the end for her. She ended up in the hospital as well and never recovered; only got more sick and weaker. At her last PET scan one tiny spot lit up. Basically her cancer wasn’t that bad, one of the doctors were saw even said that. It was the side effects of the chemo and the of the pancreas not working properly that were killing her including severe cachexia.

 My Mom passed away three years ago and I still can’t wrap my brain around what happened towards the end. It still replays in my head on a regular basis.

Prayers to you and your family in this difficult time. 

My mother was 55 when she was diagnosed with Stage III PC in November 2010 and my sister and I were in our 20’s at the time too. I know how difficult it is to deal with being so young yourself. The chemo affects everyone differently. Since your Mom is younger and doesn’t have pre-existing health problems they will probably treat her aggressively. My Mom was on a few different chemos and tolerated them fairly well (Gemzar + Zeloda plus radiation, Folforinox).

The doctor and nurses will give you a list of side effects to expect but my Mom had the most issues with abdominal cramping, cold sensitive, neropathy, nausea and lack of appetite. The best advice I can give you is to ask the doctor and nurses a lot of questions – there aren’t any dumb questions. I must have asked a million questions! Try to stay organized and keep copies of all her scans, blood work, notes from the doctor’s appointments etc.

 I’m not sure where you’re located but I would highly suggest scheduling an appointment a cancer center that specializes in PC (especially for another surgical opinion). We went to Johns Hopkins. They are usually willing to work with your local oncologist so your Mom can stay close to home for treatments.

Do you research when you find out what drugs she’ll be on. Try to have another family member or friend help out. The emotional and physical responsibility is taxing. My Mom’s chemo treatments were long 8 hours usually. I stayed with her the whole time so your ipad will be your best friendJMy sister and I did everything for my Mom and it was the most exhausting but rewarding thing we had ever done.

Someone told me when I started this journey to take one day at a time….the highs will be high and the low will be low…to this day that’s the best piece of advice I’ve ever gotten.

The most important thing is not to give up hope! I’ve been on this board and the Hopkins board since late 2010 and have seen so many people beat the odds!

Let me know if you have questions once she gets started.

Prayers to your family

I’m sorry to hear about your Mom. My Mom had sepsis from her first stent. Then 2 weeks later had gallbladder attack. Her gallbladder became infected and they placed a drain outside the body.

A interventional radiologist places a tube into the gallbladder and the bile drains into a bag. It’s a bit gross at first (looks like green slime) but we got used to it.

You need to empty the bag 1-2x per day depending on how much its draining. It’s cumbersome to carry around. It’s best to use a safety pin and pin it to her pants. She can shower with it but we always tried to cover it with a plastic baggie and not let the water go directly on the area.

It’s easy to drain and take care of. You’ll get a script for flushes that you’ll use once a day to clean the drain. Don’t be surprised if the drain leaks a bit, especially in the beginning. My Mom’s leaked bile all over her clothes, couch ect a few times. Bile is surprisingly easy to remove from fabric…something I never thought I’d learn!

I’m sure the nurse will show you how to drain and clean it. Hope this helps.

Stacey

That’s good news that they weren’t any cancer cells found. Unfortunately my Mom’s ascites was never resolved. She passed away last year. She had the fluid for almost a year. One of the doctors did mention putting in a shunt but she wasn’t strong enough for the surgery. The other option is to put in a drain where you can drain the fluid at home yourself. I also think a large part of her problem was lack of nutrition. She was malnourished which also contributes to the fluid buildup.

 

 I’ve heard of cases where it does resolve itself, so there is a chance that could happen.

 

Sounds like you have ascites. My Mom had this for almost a year after her surgery. After an endoscopy the doctor determined it was caused by portal vein occlusion. I know the ascites made her extremely uncomfortable. She was tapped every 10 days at some points and then would go months without being tapped.  

 

Has the fluid been tested for cancer cells? The doctor can tell you if the fluid is malignant which can help point towards the cause.

I took my Mom to Dr. Bruckner in December of 2011. He gave us very high hopes at our meeting and said her PC wasn’t all that bad. She was diagnosed in November 2011 and the cancer was shrunk and grew back but it was still local so he wanted to keep it that way.

 

She started treatment with him in January of 2012. His treatments are very harsh. She only tolerated two of them and was hospitalized. That was the beginning of the end for her. She was already very thin from her past surgery and chemo and couldn’t tolerate such a hard regime. She passed away in March. No mets and the same size tumor as when she was dx. I can’t blame Dr. Bruncker but I also can’t help but wonder if she’d be alive right now if she wouldn’t have went there.

 

He’s not the best conversationalist but I think he’s a brilliant doctor. We met many people there who are far outliving their expectations, so it is working for some people with difficult cancers. I will say, didn’t care for the office or most of the staff.There ’s not a lot of choices when it comes to PC and I think he’s very proactive. Just make sure to be your own advocate and take family with you as a second set of ears.

 

Best of luck.

Hi Gretchen, No my mom isnt jackie. I did speak with her awhile back regarding the nano. I heard her cancer came back? Dr. Watkins was unable to remove the tumor on my mom. It was wrapped around her portal vein. No she didn't have any mets that he could see.IUltim ately, the cancer was the root of the problem but i believe the chemo is what caused her to pass. She was doing well but started going downhill fast after she started treatment in the new year. She had no mets when she passed. I think her body was just beat. I'm still trying come to terms with it.
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About bambi99d

Caregiver
Pancreatic Cancer
Cancer Diagnosis, Cancer Nutrition, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Emotional Support, Alternative Treatments

My mother was diagnosed with locally advanced PC in November 2010. Although her cancer never spread she was unable to keep weight on and could no longer tolerate the chemo. She passed away in March 2012. I am happy to answer as questions about her treatment.

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