Pancreatic adenocarcinoma diary

[#1]

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.

[Jules2]

Hiya DPC It will be interesting to read of your journey. I also believe in both more traditional and alternative medicines. I think they can be used quite well together and it will be interesting to read of your discoveries. Julie

[#3]

Hey Julie Thanks. I believe in facts and results no matter where they come from. I guess it will be quite a journey. It was a total surprise to us BUT we are ready to tackle it, now. Cheers.

[#4]

Today we visited one of the three oncologists we shortlisted. It was a bit of a joke. The oncologist was rather young and inexperienced and has not told us anything we did not already know. After posing a couple of questions we have realised that this is NOT going to be the team we are after. Next!

[#5]

Well, today we ticked off another box...my partner went to see her GP by herself. She wanted to do it herself. So, she went by her car and after her visit to the GP she went to do some shopping, as well. She felt really good when she came back. A bit tired but very well otherwise. The pain has not come back for a few days now. Nausea, too. (touch wood 🙂 )

[Jules2]

Hey DPC Glad to read the good news ... big achievement in such a short space of time. :) Julie

[Vicki_Anne]

Glad to hear good news there DPC. Hope your partner continues to feel better. Cheers Vicki

[#8]

...very pleased with how she was received by the onc. team. She has done 4th CT scan in 2 months; 1st just before she was diagnosed 2nd a more detailed one just before the surgery 3rd after the surgery to make sure all is under control 4th today before the chemo therapy Usually only one is done but we insisted on having additional scans (just in case). She is feeling well...hm there is something else I've noticed...post surgery her appetite is better than mine. She is always hungry. She was not like that before the surgery and well before she was diagnosed. I guess it is a good thing to have such a good appetite. The weight has been stagnating for a few days (53kg).

[#9]

It's been 7 weeks since the Whipple's surgery. Yesterday and today she did 2 x 30min. walk (down and up a steep hill). Pace - 4.5-5km per 30 min. No pain. Just some discomfort later in the evening. 1x Panadol does the trick. The weight is still at 53kg with a healthy appetite. Tomorrow and Monday the temp. will raise into the 40's. We will see how is she going to handle that. Other that that no complaints.

[#10]

After two extremely hot days I gladly can report that she felt better than expected. In fact, she felt like she never had the Whipple's procedure. I was completely wrong and I am glad about that. It seems the hot climate has a positive effect on her. Go figure! Anyway, I hope the chemo treatment isn't going to make things worse. In terms of PawPaw Cell Reg she claims now that her energy levels are back to where they should be and that she feels more energised. She is much more active during the day however fatigue does come in and brief rests are much needed. I hope we will be able to get her weight back to 57-58kg as it surely plays a role in terms of fatigue.

[#11]

Two days to the start of the chemo treatment...If we did not know she had the Whipple's surgery we wouldn't be able to notice much, perhaps just a small weight loss. Apart from that everything seems as before the surgery. I just hope it is continue to be that way. The plan so far seems to be working. She is much more independent now and almost to her full capacity. She cooks her meals now because it gives her something to do. Regular walks and exercising is the routine now. She is out doing some shopping now! Due to the humid weather we experienced lately her old condition (arthritis) has given her a mild discomfort but that is being treated successfully.

[#12]

The first treatment was a looong and boring experience. There was a stuff up at the clinic so we had to wait 4.5 hours before it started. The treatment lasted only 30min. Since we arrived home she has complained only about tome discomfort in her joints and some level of fatigue. She has been eating and eating and eating since we came home. So far she has not noticed any other side effects. 1 down 17 to go.

[#13]

In addition, there are flu like symptoms since late last night and an over all fatigue feeling. No nausea and her appetite is very good. I guess lots of resting and sleeping will assist her to get through the day after. Considering that she has been very well we started questioning whether to undergo the chemo treatment at all... eventually deciding to stick to the plan.

[#14]

Since yesterday evening she has been feeling really sick (nausea, vomiting, fatigue, sore throat, pain in joints). Obviously the side effects of Gemcitabine have manifested as predicted by her doctor. Even this morning after getting up the symptoms continued. She had her breaky followed up immediately by a visit to the bathroom. We repeated the breakfast again and so far it's staying in. Yesterday I had a chat with one of the foremost specialists on PC in Australia who was kind to answer any questions I had. I was very grateful for the time he invested in the conversation. His opinion was very encouraging. One of the nurses also rang to advise us of her blood test results. All looking good with CA 19.9 marker dropping to 40.

[#15]

Hi Julie and Vicky In comparison to some other cases yeah, the progress has been encouraging thus far. She has been very lucky to get a chance to fight it. I will continue with my daily reports :) Thanks.

[Jules2]

Hey DPC With the nausea, dont forget to keep in touch with the onco people because they can change anti nausea tablets and help out a lot in that area. Julie

[#17]

Hi Julie Thanks for the tip. I think we will call them this morning. The strange thing is - she felt OK on Tuesday and Wednesday. We have been told that by the 4th day she should start feeling better. On days 1 and 2 she felt normal while the side effects started late on day 3 and today - go figure! We are all different.

[Jules2]

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

[#19]

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.

[#20]

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.

[#21]

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...

[Jules2]

Saline water with bicarb in for mucositis and i think also manuka honey can help with that.

[#23]

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.

[#24]

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 🙂

[#25]

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! 🙂

[#26]

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.

[#27]

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!

[#28]

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.

[#29]

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.

[#30]

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!

[#31]

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.

[#32]

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.

[#33]

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.

[#34]

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.

[#35]

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.

[#36]

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.

[#37]

Off the antibiotics (3 days) and chemo (2 weeks) and she is feeling much better. No pain. Out and about and enjoying life.

[#38]

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.

[#39]

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).

[#40]

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.

[#41]

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.

[#42]

Well, finally some common sense! We have dismissed one of the oncologists due to being not "flexible" enough to "think out of the square". We have been insisting on patient specific chemo treatment rather than generic/standard treatment. My reasoning (after 2 months of studying this disease) is this; - test the cancer tissue for bio-markers, tumor genome (DNA) - find all the mutations in the tissue - investigate if there is a virus present in the tissue - and then consider chemo therapy that will be most suitable for this particular cancer Only one specialist has considered this option and will recommend a course of action in coming days. Other doctors we've met so far, looked at us like - what are you talking about? The most current news is; "Traditionally, chemotherapy is selected based on the histology and site of tumor origin, but is not patient-specific. The poor efficacy of this empirical approach is seen in daily clinical practice," says Dr. Jan Franko, lead investigator on the studies. "Our work supports the notion that the selection of chemotherapeutic agents may need to be based on the unique characteristics of a tumor sampled from patients. ChemoFx® may assist with this by providing information on which drugs may actually be active in individual patients." http://www.medicalnewstoday.com/articles/214370.php Which confirms - we are not crazy and not asking for impossible! The standard procedure should be - test then treat! How is it possible to treat without testing is beyond me. This practice has been going for far too long. But not on my partner tough. I am beginning to think that some doctors are only highly qualified nurses, who only know how to prescribe standard procedures. I guess, we are after a scientist-doctor type rather than just a doctor.

[#43]

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!!!

[#44]

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!

[#45]

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.

[#46]

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.

[kj]

DPC have been following diary good news that CA19 tumour markers are still with in normal ranges and is doing well kj

[#48]

kj Thanks. Will keep everyone posted and looking forward to your positive updates and good news.

[kj]

DPC how is everything going havent seen a post on progress for awhile hope its ok kj

[#50]

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.

[kj]

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