New Clinical Trial in Switzerland?

Dear Marion.

Here are some of our thoughts on living with cancer. Even though it has been of help for us please look up on it as “thoughts” only. Each individual’s experience on living with cancer are somehow different, those reading this might have found far better ways of coping with cancer than we have. I have found and added some web-pages if somebody should be interested in reading more of some of the issues. Please excuse my English, as a Norwegian my English is rather limited.

Fatigue/exercise
Any chemotherapy drug may cause fatigue http://www.cancer.gov/about-cancer/treatment/side-effects/fatigue/fatigue-pdq However we have experienced that my husband, Tore, feels just as tired if he has been sitting in a chair for hours as if he has been walking 20 miles. It seems to us that resting are of no help when it comes to fatigue. To start with the beginning, Tore was diagnosed intrahepatic cholangiocarcinoma in July 2015. At the time he had a lot of chest-pain caused by metastases in his breast bone. From being a well trained policeman he was now lying in bed most of the day during the stay at the hospital. When he came home he hardly could walk the length of the house with out feeling exhausted. Because walking is one of the most profitable forms of exercise we started walking three times a day. We tried to walk the same length or a bit longer each time. At the time he had started with chemo, gem/cis. He had metastases in his breast bone, in his lungs, in one lymph node and three in the liver, the biggest 11,5x9cm. The first months he rested the days he got chemo, the firs days after chemo he only walked short distances, 50/100m each time, when he felt very exhausted he could even walk shorter distances. What surprised us was that resting did not seem to have any effect. We therefore started walking longer distances and ended up walking 20 miles tree times each day except from the days he was at the hospital. All this walking resulted in that Tore felt much healthier, his pain disappeared, his tumours shrunk all over, the biggest tumour in the liver shrunk from 11,5x9cm down to 5,8×3,4cm, this was of course caused by the chemo, but we are convinced that his health become much better and that his body become much stronger because of the walking, he become healthy and well trained in spite of the cancer. Only once, in Christmas, during this period his immune system dropped very low. From August until the end of April he had 12 treatments with chemo, his onc. has newer had a patient that could get as many treatments, she had expected 6/8. In August 2015 his ECOG was 1-2, in May 2016 his ECOG was 0 http://ecog-acrin.org/resources/ecog-performance-status As an conclusion, based on documentation we found and on our experience we strongly believe that exercise helps fighting cancer and that resting is of no help in curing fatigue. http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/fatigue/seven-ways-to-manage-cancer-related-fatigue https://www.betterhealth.vic.gov.au/health/healthyliving/walking-for-good-health

In May 2016 it was discovered that the chemo, gem/cis had stopped working, Tore is now on an other chemo, Flox. Before the onc. found out that the chemo had stopped working new metastases had popped up, among them two in the backbone L5 and TH5. That made me start looking for how to prevent metastases, Then Aspirin turned up…. We asked the onc. if he could get it and the onc. agreed. Tore now gets 75mg a day for a start. If he gets no side effects the dose will be a bit increased.

Aspirin:
Low-dose aspirin is associated with a reduction in the spread of cancer, however there might bee some side effects as gastric irritation and gastrointestinal bleeding, some patients even has an allergy to aspirin, you should therefore confer with your oncologist. For more information take a look at:
– https://www.sciencedaily.com/releases/2016/04/160420151401.htm
– http://www.nhs.uk/news/2016/04April/Pages/Daily-low-dose-aspirin-may-help-combat-cancer.aspx
– http://www.oncologynurseadvisor.com/general-oncology/low-dose-aspirin-improves-cancer-survival/article/495047/
– http://curacaochronicle.com/health/aspirin-could-cut-the-risk-of-dying-from-cancer-by-up-to-20-percent-study/

How to inform family and friends
To call or email every family member or friend to keep them informed might be exhausting. We solved this by making a secret group on facebook. Into this group we invited those closest to us, friends and family. This group can only be seen and found by members of the group. Here Tore can share information whenever he feels like it and those included in the group can respond, write greetings etc. For more information take a look at: http://www.facebook.com/help/220336891328465

Infection – visits
Cancer treatments might cause longer or shorter periods of weakened immune system. During these periods the patient are at high risk of getting infections, an infection harmless for a healthy person might be life-threatening for a patient with weakened immune system. You might also be denied chemo id you do get infections. We decided not to have guests or visit any body during the periods when the immune system is weakened. Some friends and family did not understand this decision in the beginning, but when they were explained that an infection, in worst case scenario might be fatal they had no problem accepting this. We also use hand disinfection before every meal to avoid bacterial infections. http://www.cancer.org/acs/groups/cid/documents/webcontent/002871-pdf.pdf

Vitamins
I have been reading a lot about vitamins and minerals, in order to find out if there are any supplement that can help fighting cancer. What surprised me was that it was written a lot about overdoses caused by vitamins and minerals, this kind of overdose can be dangerous and, in some cases even life threatening. Because of these findings Tore only takes Vitaplex, Omega 3, ferritin tablets and magnesium. Magnesium is often needed during chemotherapy, this because the kidneys do leak magnesium. Before taking ferritin and magnesium please confer with your onc. There might be reasons for you to avoid these products.

Alcohol- the liver
The liver can usually cope with drinking alcohol, I have even been told by an oncologist that my husband should eat and drink good wine, but as a cancer patient, we would strongly recommend you to avoid any alcoholic liquid. I will try to explain why. I consider the liver to be one of your best friends during the fight against cancer. Among a lot of other works, the liver has to do “all the dirty work”. The liver is in a way very much like a sponge, it filter the blood and takes up all kind of toxic, it then breaks down the toxic into harmless substances, in fact the liver is a bit of a hero! During chemotherapy and medication the liver struggles. The quantity of toxics are often overwhelming, more than the liver is meant to deal with. This can often be seen on results for blood tests. So, to the point, when we do know that the liver, our friend and hero is having a hard time, it may even be damaged, struggling to get rid of all the toxic you do need in your battle against cancer, why add alcohol on top of all the other toxic? The liver has a limit for what it can tackle, one drink on top of all chemo, medications etc might be “the drop” that makes the liver unable to break down the toxic, and that would be the end of you being able to get chemo and other medications. So why take the chance on hurting the liver, why not skip alcohol? You can read more about the liver at: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0072577/

Kidneys
The kidneys filter the blood and makes the excess waste into urine. When the chemotherapy has circulated through your body some of it will be taken care of by the liver, but chemo will also be taken out of the blood by the kidneys, made into urine, and by the urine it will be sent out of your body. During that process the chemo could be toxic to the kidneys. Creatinine is measured by a blood test. Elevated creatinine level signifies impaired kidney function or kidney disease. This can be caused by chemo. If the kidneys are not working well you might be denied chemo. So, how can high creatinine be prevented? The answer is drink ALOT! 3 litres each day, every day for the whole period, for as long as you receive chemo also in the days between chemo is what I strongly do recommend. Some oncologists might disagree, telling you that for example 2 litres might be enough, but I disagree. You can drink water, milk, juice, coffey, tea or what ever you want to drink, it all will help your kidneys stay healthy. Imagine you are mixing yourselves a glass of juice, and that you do mix together water with juice. The more juice you use, the more concentrated the drink will get. It is the same with the chemo in the blood. If the chemo is very concentrated in the blood it will be harder for the kidneys to filter out. The kidneys may be exposed for so high levels with chemo that they may get damaged. So, to avoid this make sure the chemo newer are to be too concentrated in your blood, add to liquid as you added to water in order to make the drink less concentrated, the liquid will thin out your chemo and avoid that your kidneys are exposed to too high concentrations of chemo. Remember that some of what you do drink will be sweated out through your skin, and some will be used in other processes in the body, so to be sure to keep the chemo low concentrated in the blood I think 3 litres a day is needed. PS. Try to avoid drinking a lot in the evening, it might disturb your sleep during the night.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-ques tions/why-does-a-high-creatinine-stop-me-having-chemo
http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/chemotherapy/side-effects-of-chemotherapy/kidney-damage-and-chemotherapy/?region=on

Nutrition
Treatments might make it hard to swallow, soups might therefore be both easy to swallow and very nutritious. Soup made of marge bone and oxtail is very tasty, it is also a very good source of protein and minerals. Put the bones and tails in a kettle, fill water just above the bones and tails. It need to be cooked using steady, slow heat for 12 or more hours until the meat falls of the bones. If you cook big portions smaller portions can put it in the freezer. We use to add leek and carrots, that makes the soup even more nutritious.

Take care,
Anne.

Dear Marion.

You are so nice, thank you. I will share it with you later, I need some time in order to write it down in English.

The total population of Norway is a bit more than 5.2 million. Approximately 120 persons gets intrahepatic cholangiocarcinoma each year, so it is a very rare disease. I totally agree that information about this disease must be spread. I would be very grateful if you could send the information to:
~ The Norwegian Cancer Society, post@kreftforeningen.no https://kreftforeningen.no/en/main-priorities/
~ The Norwegian Ministry of Health and Care Services, postmottak@hod.dep.no https://www.regjeringen.no/en/dep/hod/id421/
~ The Norwegian Medical Association informasjon@legeforeningen.no http://legeforeningen.no/english/

I have been reading about Pembrolizumab (Keytruda). It looks very promising. My husband now gets Flox (5-fluorouracil, oxaliplatin and kalsiumfolinat). He have had it twice. It seems to be working. His chest~ pains has already been a bit reduced, but I think Pembrolizumab looks far better. Should we ask the onc. to get Pembrolizumab instead?

Hug.
Anne.

Dear Marion.

I red several articles about you, I have also red a lot of what you and others have been writing in this forum. I also red about Melinda. I guess the other patient mentioned is: https://www.youtube.com/watch?v=_Au5plbXm3Y

I could not open your link, I guess the page is down at the moment, I will try again later.

A bit more about us….
After being hospitalized when diagnosed, my husband came home with a lot of pain in August 2015. We received a hospital-bed in our living-room for him to be able to get his back regulated up, he could not lie flat because of his chest-pains. In fact he had each night since January 2015 been sitting in a chair during the night because of the pain. As I did write before his doctor insisted on that my husband had Costocondrites… he told us to be patient, he told us that it would be better in half a year or more… Today my husband is far better. He has been lying flat since September I have some thoughts about living with cancer that I would like to share with you later if you will excuse my English This is a bit about food, fatigue/exercise, medications, vitamins, family and friends, suggestions for what to do when your immune system is weak etc. This has all helped us a lot. Maybe some of it could be of some help for somebody else too….

Take care,
Anne.

Dear Marion.

Thank you for your welcome and thank you for your reply. You have no idea what a relief it was to find this organization. I am so sick and tired of all the doctors telling us that my husband is going to die. They might be right, but we are not there yet! A year ago he was given one month up to a year to live, well, he has now lived nearly a year, 11 months since diagnoced, and he is in far better shape now than a year ago. As a mother of four, luckily the youngest are now 18, I have to make the “weels roll” in this family, and the least I need is that kind of talk. I am a nurs, even though I am not working as an any more. In the end og the eighties I worked with HIV and AiDS patients and I think cholangiocarcinoma will end up being a chronic diseas as well, and I think Immuntherapy might be the treatment making it into something you can live with and not die from.

It was one of the nurses at NCI that told me the trial would be accessable at a hospital in Switzerland. I really do hope so.

Yes my husband do have intrahepatic cholangiocarcinoma. We have been told about the trial Merck is running, thank you for the tip. It were closed 5th April. Henning does not work there anymore.

A nurs at NCI recommended us to contact MD Anderson Cancer Center in Texas, she thought they were offering the same trial as NCI, Immuntherapy using Tumor Infiltrating Lymphocytes, and that they acceptet patients from other countries as well…. My husbands oncologist will send them an application. Do you know if they do accept others?

Take care,
Anne.