Update on my dad
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- This topic has 20 replies, 9 voices, and was last updated 11 years, 7 months ago by lainy.
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May 20, 2013 at 2:39 pm #71657rainMember
Hi Crownshine,
Your Oncologist will give you all the appropriate answers and I hope I didnt confuse you further. I know that the hardest part of this process is the wait – it can be nerve racking and we are all always waiting for something; for a test result, for a CT scan, to speak to a doctor etc.
Just because he has some potential disease in his lymph nodes (again this is my understanding from your post however please ask your oncologist to confirm) it doesnt mean it has spread anywhere else. Before a Whipples they perform a variety of tests including MRIs etc to check that it there is no visibile spread anywhere else.
It is important during this process that you look at the positive aspects; your father has managed to have surgery that many unfortunately can’t and that they only saw one out of nine lymph nodes with what sounds like microscopic disease (however again get the doctors to confirm this point please)
This information is what oncologists use to make a game plan; and I am sure they will for your father.
I hope I haven’t created more apprehension and confusion as this is the last thing I wanted to do.
Rest assured that your Oncologist will explain everything in a better manner and importantly will use this information to plan your father’s treatment.
I wish all the best for you as I understand how you feel with my father undergoing this process.
All my best
May 20, 2013 at 2:07 pm #71656crownsunshineSpectatorRain,
Does that mean his cancer is spreading to other parts ? I’m, very confused about all this.Marions,
Yes we need to wait to see what the onc says, but will stay positiveMay 20, 2013 at 3:34 am #71658marionsModeratorcrownsunshine….I agree with Rain. I would wait and see what the oncologist will recommend. The likelihood of adjuvant therapy is high, but then 7 of 10 physicians order it for their patients so, nothing too unexpected. You have all the reasons to stay in a positive mode.
Hugs,
MarionMay 20, 2013 at 12:59 am #71659rainMemberHi Crownshine,
Basically it sounds like that even though there was no macroscopic (that is to the visible eye) there was some microscopic spread to the lymph nodes.
The suggestion from the oncologist would be to do chemotherapy (assume GEM/cisplatin ) once your dad can tolerate it.
I know you are worried and can fully understand that however once you have plan in place I assure you it will become more manageable.
All my thoughts
May 20, 2013 at 12:28 am #71655crownsunshineSpectatorHello Everyone,
Just a quick update on my dad:
Tomorrow he is 14 days post op from Whipple surgery, He is healing very well , is getting stronger despite having diabetes , his appetite is not what it used to be , he seems to get full after a few bites but he eats every few hours, He walks a little faster and has a little pain from incision but over all he is doing well. Hopefully he gains weight back because he looks very skinny , I hate to see him like that
He saw the surgeon/ oncologist last Friday and he said everything is going very well and is surprised on how well my dad is doing. My sister went with my dad that day , my sis said that the surgeon said something about the pathology coming back and had about 10 lymph nodes removed and one was abnormal and that he should get that checked out, which he now has an appointment in 2 weeks with the Onc.
So can anyone tell me what does abnormal lymph node mean? I am starting to think what if it spread somewhere else? I know I have to think positive The surgeon had said his tumor/cancer had not spread , so now I’m confused , yes I’m starting to worry againMay 11, 2013 at 3:57 pm #71674lainySpectatorDear Crownsunshine, such great news, I think we should take the Crown from your name and put it on Dad’s head. He is incredible! He will get tired for quite a while yet, don’t forget this is the largest surgery to the human body, it will take time but he is doing so well. I am so happy for you and your family. Perhaps the Nurses would let you bring something light for him to eat tomorrow to celebrate Mother’s Day together. Wishing you all the very best.
May 11, 2013 at 3:46 pm #71673crownsunshineSpectatorHello,
My dad is 5 days post op today from having the Whipple surgery. He gets a little better each day, gets tired often. He is still in Intensive care, but will be moved to a different floor today. I met with his surgeon yesterday and he said everything seems to be going smoothly and my dad is doing great. He is waiting on the pathology results.
My dad has been walking around the hallway 2-3 times a day for the past two days, and last night he was allowed to eat. Dr said that he will go home sometime next week.Again thank you to everyone that has given me advice, I really appreciate it.
randigb , I will speak with my dad’s onc aout the chemo , I’m very glad you are doing well
May 9, 2013 at 1:55 pm #71672RandiSpectatorCrownsunshine,
Glad to hear your father had his surgery. I had a whipple and I can tell you from experience that it’s a long recovery. There wasn’t a single day that I woke up and thought “oh I feel so much better” but I did feel better gradually. It’s important to keep moving, keep hydrated, and keep up with good nutrition even when not hungry.
Depression is often a side effect of the slow recovery and for me it was important for people to remind me that I had had major surgery and to be kind to myself.
I did have adjuvant chemotherapy (Gemzar, 6 months, 1x week for 3 weeks, 1 week off). I did it because I didn’t want to have any regrets, but there were no data that supported doing it versus not doing it. It was just my gut feeling. Since Gemzar is “easily tolerated” according to doctors (who I am sure have never had Gemzar!) it seemed like a good choice.
It’s really an individual decision (along with family/doctor consultation). There is no right or wrong.
Best wishes for a speedy recovery for your dad.
-Randi-
May 9, 2013 at 5:57 am #71671marionsModeratorRain….adjuvant therapy has only come about within the last few years – mainly 3 or 4 years. Seven out of eight physicians prescribe adjuvant therapy not based on scientific evidence, but rather on “possibly” ruling out a recurrence. Also there is no standard set for the type of chemotherapy best suited. Within the next few years (2 or more) we should have the results of some clinical trials underway now.
Hugs,
MarionMay 9, 2013 at 5:30 am #71670adaughterswishSpectatorHi Lainy, yes, we were very lucky because there were no signs until the weight loss. The tumor has taken over his entire left lobe, a smaller section of his right, some lymphnodes around the liver, and some small nodules in his lungs. We are still doing chemo oxaliplatin and gemzar. After the 4th round of the cocktail they sent him for a scan to see if there has been any change. The good news was that the left side did not get bigger and the right side has gone away which the docs feel more confident about doing a lobeectomy of the left side to which holds 95% of the tumor. Then do some post op chemo for the lymphnodes and nodules in the lungs. Sorry CrownShine to take up space on your post.
May 8, 2013 at 9:18 pm #71669lainySpectatorA Daughter’s wish. I would say you are a lucky daughter…you got your wish! THANK GOODNESS the Endocrinologist sent Dad to an ONC! What is scheduled next for Dad and where is he going to be treated. I am a little confused how he was unresectable and now he can have the surgery. In between this time did he have Chemo? Wishing you the very best and please keep us updated.
May 8, 2013 at 9:09 pm #71668adaughterswishSpectatorI’m so happy to hear your dad is doing well. My dad was diagnosed January 2013. Kind of the same story as yours… he was loosing a lot of weight and his PCP said it was because of his high blood sugar and sent him to an endocrinolgoist. All his liver function tests were and still are normal. The endocrinologist felt his abdomen and felt his liver was a little too big. He sent my dad for an ultrasound, then a CT, then he referred us to an oncologist. The oncologist had a biopsy done and confirmed stage 4 CC. At that time my dad was not a surgery candidate because the tumor had spread to both lobes but yesterday we found out that he is now eligible for surgery. Please keep us posted on your dad’s recovery and stay as possitive as you can and trust me i know its not always easy. Its all mind over matter. Wishing your father a quick recovery and you and your family the strength to help your dad fight this ugly battle.
May 8, 2013 at 2:12 pm #71667lainySpectatorDear Crownsunshine, actually your Dad is moving along nicely, one of the things with this surgery is to be very patient as the healing process can be pretty lengthy but when the tubes are all out the comfort level will get much better. I have one suggestion. I had a different stomach cancer and when I woke up I had the tube down my throat for 4 days. I immediately asked for Cloraseptic throat spray and it worked beautifully. I was leery about swallowing a lozenge and I could eat a little and talk after I sprayed. Well, noone has really ever stopped me from talking! I hope things will continue upward and all in all this really is a good report.
May 8, 2013 at 2:08 pm #71666rainMemberCrownSunshine,
Just know that the Whipple’s surgery does take some time to recover however can assure you that in a few weeks time you will be surprised by the recovery he makes!!
My suggestion from past experience regarding your fear of relapse; look at the tumour margins and also how many lymph nodes they took out (my dad had only 9 out and I read so many stories here where they had 20 nodes out. I wonder if the surgeon took enough out).
Also ask many opinions regarding pros/cons re preventaive/adjuvant chemotherpay. I had asked two oncologists whom said it was not required as he had negative lymph nodes and also good margins (unfortunately I did not know of this board at the time- i wish I did) and am wondering if we should of done some chemptherapy like many people in the US seem to
all the very best of luck for your father
Rain
May 8, 2013 at 1:55 pm #71665crownsunshineSpectatorHello everybody,
I just want to say that I am grateful that I found this online board, I have been reading for a few weeks now and I have learned so much. Thank you to everyone that has replied to me .
Today is day two post op for my dad and he really can’t talk , he says his throat hurts bad but I’m sure it’s from the tube they put on his throat during surgery, nurse has given him lozenges which help a little. He also complains that his stomach hurts but it is being contolled with pain medication. The one thing he really hates is the catherer which he says is very painful, but overall his vitals are good and he says he feels a little better. The nurse said that today he might leave intensive care since he is doing so well. He is already sitting up in the chair now and will start to walk a bit.
My dad has gone through so much and recovery will be a while and I worry that the cancer will come back. I pray to God it doesn’t , I will remain positive.
Thank you for listening. -
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