GIST Q&A with Dr. Peter Reichardt

 Nutrition? Fatigue? Flu shot? Exercise? Vacation? Drinking? Sauna?
The House of Life, Germany’s GIST organization, receives questions daily from GIST patients and caregivers concerning lifestyle do’s and don’ts when having GIST and being treated with imatinib (Gleevec). Stefanie Peyk, GIST patient and co-editor of the House of Life, interviewed Dr. Peter Reichardt, the GIST expert of the House of Life.

Is there a special diet regimen that GIST patients should follow?

No, there is no GIST diet. Dependent on the disease and on surgical interventions, there are different things which have to be taken into consideration. Patients without a stomach have to eat many small meals throughout the day and need a vitamin B12 injection every month. Patients without a pancreas have to be careful with food that has too much fat. Patients, who lost part of the bowel need to watch the food intake. In any case, it is recommended to consult a dietician. Nutrition is always very individual and dependent on many factors.

To emphasize it again — there is no GIST diet. There is as well no need to change the diet because of GIST or because of a treatment with Gleevec. However, it is recommended to have a healthy and balanced diet — as it is recommended for healthy people too.

Very often tumor patients are advised to use multi-vitamins or dietary supplements. What do you think about this recommendation?

There is no sufficient research based evidence showing the benefit or positive influence of dietary supplements on a disease or the well-being of an individual. In reference to vitamins, a healthy and well balanced diet with fruits and vegetables cover usually the recommended daily intake of vitamins and minerals. There is no need to buy expensive supplements. We are anyway hesitant and would not actively recommend supplements.

Are there any foods that might interfere with imatinib?

Imatinib is metabolised in the liver. As such, all food and some drugs do potentially interfere with the metabolism of imatinib. This can happen in two ways. It could happen that the metabolism of imatinib is reduced so that the imatinib level in the blood would increase. This might result in an increase of side effects. Grapefruit might have this effect — therefore be very careful with grapefruit and grapefruit juice. Eating a grapefruit occasionally is OK but it should not happen regularly.

More problematic is the increased metabolism of imatinib because of food or drugs. The result could be a reduction of the blood level of imatinib. There is the danger that imatinib does not work enough! The apparently harmless St. John’s wort could have this effect. St. John’s wort is often taken against depression.

Does milk reduce the absorption of imatinib?

Milk has no effect on the absorption of imatinib. There are some drugs, where the calcium of the milk might bind the drugs and it is harder to absorb. There is no such information for imatinib.

At what meal is imatinib best taken?

Imatinib should not be taken on an empty stomach; it should be taken with or after a meal. Patients, who take imatinib once a day usually take it with breakfast. There are patients who tolerate the drug better when taking it with/after dinner. It does not have an impact on the efficacy. Imatinib should be taken regularly at the same time, either with/after breakfast or with/after dinner. Patients, who have to take a higher dose and who have to take the tablets twice a day, take it automatically with breakfast and dinner.

Imatinib and alcohol — does this work?

There are no interactions between imatinib and alcohol. Alcohol has an effect on the liver. Patients who take imatinib should drink alcohol in small amounts. The information about not drinking any alcohol is not correct. Once in a while, sparkling wine, wine or beer is OK.

So patients with liver mets are allowed to have a glass of sparkling wine for their birthday?

Absolutely. As said before — once in a while is OK.

Many patients complain about fatigue. What can they do?

One of the main side effects of long-term treatment with imatinib is chronic tiredness, also known as fatigue. But fatigue is more than just being tired. It is more a feeling of lassitude, getting tired fast and feeling less efficient. To do something against it is very difficult.

Also, there are patients with a normal haemoglobin-level and they still feel tired, fatigued. That means that anaemia is not the sole reason of fatigue.

So what can one do? It is important to stay physically active and to avoid longer times of relaxation. Patients who take frequent breaks throughout the day often have sleeping problems. Patients should take walks, go swimming or try to actively do what they did prior to the disease. Physical activity often helps against fatigue.

Which drugs can you use against headache?

Paracetamol (acetaminophen) and combination drugs with paracetamol should be avoided. Drugs such as aspirin or ibuprofen can be used to treat headache.

Is it OK for GIST patients to get a flu shot?

Yes, there is no contraindication. Patients, who want to get the flu shot, should do it. If a patient does not want it or a physician is not in favor of it - GIST per se is no reason to get the shot. The decision can be made independently from the disease and from the treatment with imatinib.

Can GIST patients exercise without any limitations?

Gist patients can do any type of exercise. Some patients have limited sport efficiency due to e.g. low haemoglobin level or fatigue. Therefore patients should not overextend. They should lower their goals and should not try at all costs to be as successful as they were prior to the disease. This could be very frustrating. If somebody used to walk 25 miles, they might have a problem still doing this. So the patient could start with 10 miles and gradually add more distance. However, exercise is quite important and beneficial to treat fatigue. One should be careful with extreme sports but in theory there are no limitations. It is a very individual decision and independent of the diagnosis of GIST.

Is it OK for a GIST patient to receive a massage?

There is no reason to not get a massage. If a patient has a tumor in the abdomen, than there should be no pressure set on this area. But there is no contraindication to receive a massage at the back or neck. There is a rumor out that a massage might provoke the spread of cancer cells but that is absolutely not true for GIST. If a patient had an operation, no tumor left and no drug treatments as well, then there are no limitations at all.

Can a GIST patient go in the sauna and what rules are to follow?

Sauna is ok. The patient should of course consider his maybe limited physical efficiency (low hemoglobin, fatigue). If a patient is used to going in the sauna, then he/she knows the limits. If one never went to the sauna, be careful and start slowly.

What should GIST patients consider, when they go on vacation?

Imatinib increases the photosensitivity of the skin and makes it much harder to get a tan. The risk to get a sunburn is much higher. Proper dress, sun protection (high SPF) and not too long sunbaths are important. The sun in the mountains should not be underestimated. Where to go?

This decision depends on the stage of the disease and the current treatment. Somebody who is treated should go into countries where access to medical care is easily granted. A metastatic patient treated with imatinib should not take a Jeep tour through the Sahara. If a patient is not sure, then this question should be discussed with the treating physician.

Can a female patient treated with imatinib become pregnant and can a male patient treated with imatinib become a father?

Women treated with imatinib should under no circumstance become pregnant. The drug has very likely a big risk to influence the development of the embryo. It is unclear if a man treated with imatinib should become a father. There is no experience or data available. However, it is recommended to not become a father. Independent of becoming a parent, patients can be sexually active.

The fear is that imatinib can influence the development of the embryo. Is there any evidence that the sperm cell or egg cell could be damaged?

No, there is no evidence. If a patient underwent successful surgery, no tumor left and received for a few years imatinib as an adjuvant treatment, then the patient can become a parent after having stopped the imatinib therapy for a while. The prognosis needs to be taken into consideration. If we talk about a high risk GIST patient with a high risk of relapse who receives imatinib adjuvant, then I would not recommend considering parenthood. If a patient makes an informed decision and still decides to become a father or mother, then there is no contraindication from a medical standpoint. This is more an ethical or moral question.

If a parent has GIST, is there a risk the kids might get GIST one day?

No. There are a very few exceptions of GIST cases running in a family but GIST in general is definitely not inheritable.

Some of the patients know that the grandparents had a tumor in the gastro-intestinal area. Could it be possible that these cases were a GIST but were not diagnosed as such?

Family based GIST is extremely rare and there are only a few cases known globally. So the chance, that this was a misdiagnosed GIST is very small. Tumors in the gastro-intestinal area are very frequently diagnosed. If it comes up in a family history, this does not mean anything.

Dr. Reichardt, thank you very much for this interview.