Pancreatic adenocarcinoma diary
Hi all.
I will keep an online diary re; pancreatic cancer. Any info that I am going to be sharing will represent only my own opinion and won't be an advice of any sort to anyone. I am NOT a medical practitioner and I am not associated with a commercial entity that may be promoting any treatments or products that may help in cancer prevention or treatment. My partner has been recently diagnosed with pancreatic cancer.
As I have access to the most recent medical studies and medical journals and have good internet browsing skills I will post any and all info I find interesting regarding pancreatic cancer in this blog.
Only recently I've started learning about pancreas and pancreatic cancer therefore I am an amateur. I will share what we will be going through and what kind of therapeutic treatments will be undertaken including dietary regimen.
So far, I've invested 4 weeks in making a very comprehensive strategy that we are about to execute. It includes both conventional and alternative approach. I personally do not favour either but have insisted on exercising both at the same time. I believe in science and am a sceptic by the nature, however I will scrutinise both - conventional and alternative ideas if/when I can.
So far we have gone through the Whipple's procedure. She has been recovering very well. I will talk more about it in coming days. I will also talk more about our dietary, physiological and psychological therapeutic plans as well as chemotherapy and other ideas and intentions.
My intention is to contribute to this website voluntarily by sharing our own experience, available online resources and most current developments in relation to this deadly disease, and in such a way assist others who may find some of our strategies useful.
Thanks.
- DPC's blog
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Comments
Re: Pancreatic adenocarcinoma diary
The MRI results are in and they are in agreement with the PET results - all clear and looking good! We are very pleased with how her recovery is progressing. The only "doubt" raised after the last round of results is that CA 19.9 tumor marker is slightly up (56) and is at its highest since the surgery. When looking objectively on overall progress of recovery, and the results, this should not be of concern and may be due to a round of antibiotics she was recently on. At this stage we won't let that worry us.
Re: Pancreatic adenocarcinoma diary
DPC
Good luck with tumor markers hope its a hiccup I see oncologist next month i am ok
kj
Re: Pancreatic adenocarcinoma diary
DPC
Havent read any entries in your diary for a while how is it all going
kj
Re: Pancreatic adenocarcinoma diary
KJ
All good. She is physically OK. No nasty surprises, however, she moved out and is enjoying a life of a single person. And I think it may be good it is that way, now. Less stress, more time for herself.
I hope it stays that way on both fronts.
How are you doing? I hope you are getting better. Wish you all the best.
Re: Pancreatic adenocarcinoma diary
DPC
Thanks for posting been wondering whats been happening with you both, sad to hear of the current living arrangements,but glad that her health is ok Cancer can put massive strain on relationships, hope everything works out for you both I am ok at the moment and all the best to you both
kj
Re: Pancreatic adenocarcinoma diary
PET scan results were positive but just to make sure that it is the case we will organise a MRI scan as well. It is said that sometimes PET scan does not show the most accurate picture when liver is in the question. A few days away...
Re: Pancreatic adenocarcinoma diary
All good news! Very excited. No evidence of metastasis in abdomen and pelvis areas. Chest clear, as well as skeleton. The only new thing is a 7mm artefact (liver) that will be examined closely in coming days (PET scan). Residual pancreas seems to be healthy. CA19.9 market slightly up from 41 to 48. Life is good!
Re: Pancreatic adenocarcinoma diary
Thank you ppl. I know it will be OK
Re: Pancreatic adenocarcinoma diary
I hope she gets good results.
Re: Pancreatic adenocarcinoma diary
DPC
good luck with the results fingers crossed
kj
Re: Pancreatic adenocarcinoma diary
I hope the reults come back good, my thoughts are with you.
Sunshine
Re: Pancreatic adenocarcinoma diary
On WED this week we are getting her CT results. This is the first post 12 - months scan. Feeling a bit anxious for the first time since the surgery. Fingers crossed!
Re: Pancreatic adenocarcinoma diary
Red and processed meat and PC;
http://www.medicalnewstoday.com/articles/240319.php
Plus;
http://www.pancreaticcancer.net.au/apgi/2012-apgi-symposium/symposium-pr...
I will be attending.
Re: Pancreatic adenocarcinoma diary
A bottle of champagne was popped today and shared among the family. All good! 12 moth since Whipple's all clear, one down, 4 to go! (anniversaries that is)
Re: Pancreatic adenocarcinoma diary
12 months to the day....All clear, her weight is back to normal, post Whipple's morbidities present in the evenings....can be managed by making last meal of the day before 3pm. Tumor markers in check....her daily activities as mentioned previously intact...gets tired easily which causes mental fatigue as well. So far, very happy.
Re: Pancreatic adenocarcinoma diary
I has been 10 months since the surgery. She is feeling well. The fatigue factor is always present and we think it may be related to iron deficiency (will be receiving infusion 4x a year) in her system but other than that she is OK. Regular visits to her psychiatrist, GP, and other specialists is a part of her lifestyle, now. We are continuing with stress free approach to everything even though we both have emotional crisis periods. It has changed us a lot. She is certainly tougher mentally. I have changed too
I am not as tough as she is. We are rapidly closing down to the 1st anniversary and looking forward to it.
Go the Cats!
Re: Pancreatic adenocarcinoma diary
Almost 11 months since surgery, now. The last CT scan and blood results including tumor markers (CA19-9 is at 31) are all clear and fine. The blood test results are normal. She will have 3-4 times iron infusion per annum and apart from that all seems to be OK. Still fairly easy to get tired, regular yoga classes, exercise, good diet (as mentioned before) in place, less stress etc. A month shy from the 1st anniversary.
Re: Pancreatic adenocarcinoma diary
kj
Thanks for your message and interest. We have been busy getting on with life. It is progressing nicely. The tumor markers are under control. She has been exercising, doing yoga, power walking, seeing a psychiatrist and other specialists on regular basis. Still she gets tired easily and fast but the cancer issue seems to be under control. The last scan was clear. We will continue with everything we have been doing (and as outlined in my threads) and try to minimise any stress or other factors that may have caused it.
How are you? I hope you are doing well.
Re: Pancreatic adenocarcinoma diary
DPC
Thanks for replying I am doing not bad I see the oncologist this week so I will have a better idea then They are trying pain management for my pain after surgery,I hope they can help as it hasnt improved since whipple all the best to you and youre partner
kj
Re: Pancreatic adenocarcinoma diary
kj
Thanks. Will keep everyone posted and looking forward to your positive updates and good news.
Re: Pancreatic adenocarcinoma diary
DPC
how is everything going havent seen a post on progress for awhile hope its ok
kj
Re: Pancreatic adenocarcinoma diary
The onco is optimistic after having a look at the CT scan results. All clear with tumor markers (CA19.9 - 32) within the normal range. We are very happy and will continue with everything we have been doing. 7 1/2 months on - she is doing pretty well.
Re: Pancreatic adenocarcinoma diary
DPC
have been following diary good news that CA19 tumour markers are still with in normal ranges and is doing well
kj
Re: Pancreatic adenocarcinoma diary
It has been 6 months since the Whipple's procedure. If the first 6 months are an indicator of what to go by or expect in the forthcoming period (be it months or years) we could not be happier. We both hope that this trend is going to continue. She has reached 57kg as planned. She has been doing regular exercising (walking, jogging, even some light lifting etc.) and getting stronger and happier. There are no post-surgical side effects. She is very disciplined with her rehab regimen. She is positive and "busy" recovering. The blood test results are giving us - thumbs up. Over all - I have one word - wow!
Re: Pancreatic adenocarcinoma diary
Tomorrow is the first CT scan after she has decided to stop with the chemo. She is not obsessing about it but is rather relaxed and confident as she has been feeling pretty good. Will update in a few days.
Re: Pancreatic adenocarcinoma diary
We did another blood test yesterday and got the results today. The CA 19.9 tumor marker has dropped to 29 and is within what is considered to be normal (some labs consider <31 while others <33 or <37) No matter what it has not been this low since she has been diagnosed in Nov. 2010.
Great news!!!
Re: Pancreatic adenocarcinoma diary
It's been 5 months since the surgery. The overall progress has been remarkable. Rest - exercise - eat well is the triad we have been religiously exercising. No chemo. No pain. Some fatigue. Her weight is around 56kg now. We are one more kg away from reaching our 6 month target of recovering fully since the Whipple's.
We make sure she has enough sleep (sleeps whenever she feels sleepy). The diet has not changed since we implemented it 5 months ago. She can handle it better now than right after the surgery or during the chemo. 60min walks happen every day. In a month we will do another CT and a blood test and continue living the life to the max.
Re: Pancreatic adenocarcinoma diary
Our family friend who happens to be a military GP was informed that my partner was on the chemo treatment. At the time he did not provide any kind of advise. Only yesterday when he rang to see how is she doing we have told him that we have decided to stop with the chemo for good. He said he could not be happier for us and that we have made the right choice. During the treatment he was silently against it but he did not want to say anything. Yesterday he explained thoroughly why he is against chemo with some cancers and why he thinks it would have done more harm than good in this particular case.
It has been a magnificent Easter break for us. Everything seems to be back to normal. No symptoms. No pain, in fact she looks like she never had the surgery or cancer. She only feels some soreness in her legs from walking and exercising but that kind of "pain" is always welcome.
Re: Pancreatic adenocarcinoma diary
Although it is still of the limited nature the good news is - and it has been almost 3 weeks since last chemo dose - she is back to walking/jogging and doing other physical activities. No pain, nausea or anything else that would indicate that she has recently undergone a very serious and extremely difficult to recover surgery. The tumor marker CA 19.9 has gone up a bit to 47 from 37 but still this is within a reasonable range. The test was done at a different pathology, too. We will keep monitoring it closely (every 2-4 weeks).
Re: Pancreatic adenocarcinoma diary
Off the antibiotics (3 days) and chemo (2 weeks) and she is feeling much better. No pain. Out and about and enjoying life.
Re: Pancreatic adenocarcinoma diary
The doctor was very open and frank about our options today. There are really three choices;
1. continue at 65%
2. switch to 5FU
3. stop the chemo treatment altogether
There is no right or wrong choice, he said. At least he was honest. We are all aware that they really know very little about which chemo (and what dose) works best for an individual. What they do is the shot-gun approach and hope for the best. He was so frank that he said that he really does not know how to determine the right dose for each patient. It is all trail and error. I think we both appreciated his honesty. She feels much better today. The next visit is in 2 weeks. No chemo until then....perhaps no chemo at all anymore unless we get what we really want....a personalised treatment. We have been talking to another doctor who may be able to help.
Re: Pancreatic adenocarcinoma diary
The standard chemo treatment will stop. No more! She has done 5/18 and her health has rapidly deteriorated every time she had it. This time her stomach lining is so affected by it that it is causing so much pain and discomfort. Plus she is on some strong antibiotics as she is trying to get rid off the bug that has been bugging her for some time. The good news is that her tumor marker CA 19.9 has dropped to 37 which is what we have hoped for.
At this stage regular CT scans and blood tests with organic and preferred foods will be the only treatment. No more chemo. There is one more option that we are still looking into and if all is OK she may give it a go.
Re: Pancreatic adenocarcinoma diary
She has been released from the hospital and will continue with the latest meds at home. I think this is it for us re; the standard Gemcitabine protocol. It is not working. Her body has been complaining and has sounded the alarm each time she took it. We will opt ONLY for a more personalised treatment if the current oncologist is up for it. If not, we will find the one that will do so. Getting hit firstly with chemo and then with very strong antibiotics isn't the way to fight it. The doctor thinks she lacks an enzyme that flushes Gemcitabine out of her system. The test isn't performed in Australia according to one of her doctors. We will see what is the next course of action. For now, she will rest for a week or two. My guess is - she may immediately start getting better as Gemcitabine gets flushed out.
Re: Pancreatic adenocarcinoma diary
She is on antibiotics now. As soon as the symptoms from the infection abate she feels great. The good thing is that at this hospital she can get as much food (cooked in-house) as she wants. You would have realised by now that I am very particular what foods are to be eaten when dealing with cancer. I am very pleased with what this hospital has on offer. I do bring some food from home but the rest is from the hospital's kitchen. Maybe one or two more days and she will be returning home.
Re: Pancreatic adenocarcinoma diary
Day 4 - she had fever, cold chills and high temperature (39.7) today. This is the same scenario as after the last round. We decided to go to the hospital immediately. She is currently there (perhaps a few days) until they see if she is having an infection. She seems to be Gemcitabine intolerant and we doubt she will continue with this type of chemo. As further talks are being conducted during the week we may be looking at an alternative approach which is going to be more personalised and perhaps easier to manage/tolerate.
Re: Pancreatic adenocarcinoma diary
Day 2 - she is feeling great! The side effect at this stage are minimal. Her appetite is excellent. She has put another kg on in 3 days! We are 1kg away from our target. We have spent the day out and about watching a sporting event for about 6 hours. We walked from the stadium to our car (2km each way) and spent majority of the day cheering and on our feet. She feels tired but good. So far I could not be happier. Fingers crossed.
Re: Pancreatic adenocarcinoma diary
Tomorrow we are back at it again. This time she will be given 60% of the original dose. Her doctor was understanding and accommodating. We are considering an alternative-mainstream approach led by an oncologist from SA. The main thing at this stage is that her appetite is very good, her weight is back above 55kg. She is able to walk and jog a bit, good mood...until tomorrow!
Her doctor thinks she is one of rare people who are Gemcitabine intolerant and no matter how low we go she will feel quite knocked out when on it. We will see whether it is a correct assessment in a few days.
It's almost 120 days since the surgery! All seems OK at this point in time. No post surgery pain of any sort. The wound has healed completely. Our target is 57kg at 6 months after the surgery. We are 2kg away from that target.
Re: Pancreatic adenocarcinoma diary
This week we have decided to skip a rendezvous with the poison. The dose was lowered by further 15% but due to general weakness, fatigue and a big WBC drop the next one will be in a week instead. Her appetite isn't good anymore and it is all due to Gemcitabine.
I am not sure if this is common or not but we've noticed her nails have grown quite a bit and are thicker and stronger than ever before. Usually they would easily break but not this time, or not since she started on Gemcitabine. Well, that's about the only positive thing I can notice. If the next rendezvous with it manifests the same side effects, even at a dose that will be reduced by 35% since initially prescribed by her oncologist (received 3 during the first cycle) she may give it a boot altogether. She was very very close of doing it last week and two weeks ago. The last one (start of second round) was reduced by 20% yet the side effects are worse than during round 1! Duh!
Re: Pancreatic adenocarcinoma diary
The dose was reduced by 20% and this week (day 3) she has been feeling better. She isn't as weak as she was a couple of weeks ago. She gets tired but not as much. The WBC jumped from 1.06 to 6.3 in a week. This was her second consecutive week off the chemo treatment. Her weight went also up - 54.5kg and has been steadily creeping up bit by bit.
She still takes a lot of; garlic, American PawPaw supplement capsules, turmeric (stirs it in a glass of water), Papaya, Vitamin D (5000 IU a day), lots of kefir and protein powder with no sugar in any food. Instead of meat she drinks Whey protein (WPI provides 85.5g of protein per 100g) no sugar or carbs in it.
Re: Pancreatic adenocarcinoma diary
It has been a month since we checked the tumor markers. With the chemo treatment underway usually these markers are not checked until the treatment is completed. However, we have done it on our own accord for peace of mind.
CA 19.9 has gone up from 40 to 44.
This may be because of Gemcitabine. She has been feeling great this week. Her weight is still at around 53.5kg.
Re: Pancreatic adenocarcinoma diary
After a further counsel with her oncologist the plan is to continue with the chemo treatment but the dose will be reduced by 20% and (if required) she will get an additional week to recover if her reaction is similar to that of the first cycle.
It's been 2 weeks off Gemcitabine and she is feeling much much better. The real concern is if the previous experience will occur again. If she suffers another bout of "feel being hit by a semi" (and it is highly likely she will) I am not sure if she will have enough courage to keep going for 4 more months after that.
A new vaccine has been announced the other day
http://www.medicalnewstoday.com/articles/218206.php
We are looking into that, as well.
Tough!
Re: Pancreatic adenocarcinoma diary
After the first round of chemo she contracted a bacteria in her blood due to affected stomach lining which caused a high temperature and a range of other things. She is in the hospital getting some antibiotics and hopefully will be discharged soon. We are considering either a lower dose of chemo or stopping the treatment altogether. Even though we were aware that chemo would affect her recovery we aren't impressed with how things are progressing lately. Before the treatment started she felt well. Now we are "academically" tossing between 16% and 23% (chances of long term survival in patients with resected pancreatic cancer), talking about chemo being "assurance", and statistics... all too philosophical rather than therapeutic. I guess, she is going to have a chat with the oncologist, seek a second opinion and then make a calculated decision. She has a good appetite even though she is fairly weak. There is desire to continue with physical activities but currently she is unable as the chemo treatment is affecting that aspect of her rehab. My take on this issue is - she is damned is she does (continue) and damned if she doesn't.
Re: Pancreatic adenocarcinoma diary
The first round of Gemcitabine has been delivered. She has 2 weeks to recover from the poison. We have been told Gemcitabine is well tolerated. Well, it's not. It has caused a number of side-effects and is in the same category with any other chemo drug. The only thing they guessed right is no loss of hair (so far). The recent CT scan has delivered some good news. No trace of a tumor has been found. It all seems clear and the doctor seemed positive. She is going to see him next week to determine the dose for the next round. We have been told that it will be lowered to ease off some of the side effects she has been experiencing. Other than that, it's a beautiful day!
Re: Pancreatic adenocarcinoma diary
Stemetil (nausea medicine) has been working much better than whatever she had a week or so ago. Again, general fatigue due to lack of sleep is the only side effect. She has been eating well with no nausea present at this stage. This time day 4 has been much much better tolerated than the week before. (On a personal note - in 4 months this is the first day I feel like crap. I could tolerate the diagnosis, surgery but somehow watching her going through chemo has more impact on me than anything else. I am confident I will sort it out over the weekend
) I guess the news about Steve Jobs have contributed to it, as well. Oh well, a nice gym boxing session will do the trick 
Re: Pancreatic adenocarcinoma diary
Thanks Jules2. That's exactly what she has been doing. I guess we need to be both, persistent and patient. The other side effect we have noticed especially this week is increased insomnia. She usually likes to sleep in anytime, anywhere but since the commencement of the treatment she can't fall asleep easily even when she is very tired. We will need to work on that.
No nausea on day 3 this time.
Re: Pancreatic adenocarcinoma diary
Saline water with bicarb in for mucositis and i think also manuka honey can help with that.
Re: Pancreatic adenocarcinoma diary
Days 1 and 2, after the 2nd dose of chemo have passed exceptionally well. She has changed the nausea medication and it seems this one is working better. Her appetite is very good. Physically she seems stronger than after the first dose. She went for a walk. The only other side effect so far is mucositis. Any tips would be appreciated...
Re: Pancreatic adenocarcinoma diary
Chemo visit No. 2 - done (16 to go). She went by taxi and came back home by taxi. Completely independent. Next time it's a home visit. Feeling OK with a bit of sore throat from the week before.
Re: Pancreatic adenocarcinoma diary
Nausea has stopped yesterday but fatigue and sore throat have persisted even on day 5, however she is feeling much better even with these side-effects. She even got up after midnight to have something to eat as she felt she was starving.
A blood test on Monday and then we repeat the same on Tuesday.
Re: Pancreatic adenocarcinoma diary
I used to get hot flushes on day 2 and 3 and then nausea day 4, ended up in hospital with it one time. The next chemo they just changed tablets and I didnt even feel ill at all and didnt take the tablets for the total number of days that they recommended. Weird and yes we are all different.
Julie