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October 2012 Ask the Expert: Metastatic Breast Cancer Symptoms and Side Effects

During the month of October 2012, Living Beyond Breast Cancer expert Virginia F. Borges, MD, MMSc, answered your questions about managing symptoms and side effects caused by ongoing treatment for metastatic disease.

Please talk about management of hand-foot syndrome?

What do you hear about L-carnitine and calcium/magnesium combination for managing neuropathy of the hands and feet?

I have mets to the bone and am taking gabapentin (Neurontin) and duloxetine (Cymbalta) for pain management. I feel I am doing better, but with letrozole (Femara) and shots of denosumab (Xgeva), how can I tell which is the cancer and which is the treatment?

What supplements are contraindicated for those who have breast cancer, primarily dealing with menopausal symptoms, but if you could expand to any and all supplements that are contraindicted?

A friend of mine who also has breast cancer highly recommends coconut oil as a vaginal lubricant. My gynecologist has not heard of this. Do you know anything about it its efficacy and if it would cause vaginal infections etc.?

What is the best way to manage fatigue? If I put in a regular day’s work, I will sleep for 10-12 hours that night.

How can I control itching from Tykerb?

For managing mouth sores and acid reflux from chemo, aret here natural remedies such as probiotics, lysine, vitamin E oil or essential oils? Are there natural remedies that change hormones and alter chemotherapy?

I keep getting pimple-like sores on the crown of my scalp, regardless of what shampoo I use and if I wash my hair three times a day or every other day. Can meninginoma cause scalp issues, or is this a result of the meds trying to detox through my skin? 

I have mouth swelling and a severe sore throat. The doctor said to discontinue capecitabine (Xeloda) until my mouth clears up. It has been two weeks, and I still have a mild sore throat. I am wondering if I should restart or keep waiting until it completely clears up? I don't want to call my office because I feel like I am bothering them all the time.

Question: Please talk about management of hand-foot syndrome resulting from Xeloda treatment. I am using thick creams and Aquaphor, but my feet are still painful and hands are very dry.

Dr. Borges: Hand-foot syndrome can come on very significantly when you start using the chemotherapy capecitabine (Xeloda). It can also slowly increase over time as you take ongoing cycles of the medication.

Very thick emollient-type creams used multiple times a day and with a heavy application at night with socks and/or gloves can combat the dryness and cracking of your skin. It is a chronic problem with the medication, so even when the symptoms improve, you must keep using the creams or the side effect will worsen again.

If the hand-foot syndrome is so bad that it causes pain, particularly if the pain is enough to interfere with your usual daily activities (like walking), then your doctor may consider lowering the dose of Xeloda. If you have been on Xeloda for a long time, sometimes adding in an extra period of time to the “week off” of the cycle can reduce the pain and permit ongoing treatment to continue. 

Adding supplements such as the B6 vitamin can also help—the dose and schedule of B6 is available in the teaching materials (video and "starter kit") provided by the manufacturer of Xeloda. You can ask your doctor for this information if you did not already receive it.

Question: What do you hear about L-carnitine and calcium/magnesium combination for neuropathy of the hands and feet?

Dr. Borges: Neuropathy is a problematic side effect on the nerves of the body caused by certain chemotherapy drugs, particularly if they are used over many doses for a significant period of time. No large, placebo-controlled studies demonstrating  that supplements can truly prevent or reverse neuropathy from developing have been done yet. Therefore, we do not have adequate data to recommend any particular combination.

For women in ongoing treatment for metastatic disease,managing the dose of chemotherapy can help delay or reduce the neuropathy. Medicines such as gabapentin have been shown to reduce symptoms and relieve burning and numbness associated with neuropathy. Many supplements have also been tried by women with varying degrees of success. 

There is a 30 percent likelihood that you may experience the placebo effect, or benefits from a particular treatment that arise from your expectations concerning the treatment rather than from the treatment itself. This is why we need blinded studies to know what really may help. 

Many of my patients talk to me about trying supplements or combinations of supplements to help with managing symptoms such as neuropathy, and I often decide to have my patients go ahead and try them for a time. I will also have my patients try acupuncture if they can afford to do so and are willing as well.   

We definitely need better ways to manage neuropathy, and there are a number of ongoing studies trying to tackle this question (which is why I used the word “yet” up above). Hopefully one of them will yield positive results soon. 

Question: I have mets to the bone and am taking gabapentin (Neurontin) and duloxetine (Cymbalta) for pain management. I feel I am doing better, but with letrozole (Femara) and shots of denosumab (Xgeva), how can I tell which is the cancer and which is the treatment? I had one scan last year, my tumor markers (CA 27-29) are dropping and that seems to be what the doctor is considering effective response to treatment. What would you advise?

Dr. Borges: It can be difficult to sort out what are the side effects of a medication compared to what is a concerning symptom for cancer progression. Sometimes keeping a close track record (pain diary) of the side effects can help with that answer, as treatment-related symptoms often fluctuate around the time of the injections. 

Also, cancer-related pain will often improve in the face of effective treatment that is providing you with clinical benefit. If your pain is progressing, that can be a concerning sign that may warrant added blood tests or repeating imaging scans. 

If you are dealing with chronic pain related to cancer, pain due to prior cancer therapy or even pain due to a non-cancer medical cause, and that pain can be adequately controlled by medication, then we sometimes cannot sort out the difference and often need to rely on blood tests and scans more than your symptoms to know how the treatment is working. 

If you feel uncertain about whether your current therapy is providing adequate benefit, you should address these concerns with your doctor and ask for an explanation of the plan for your ongoing cancer surveillance.You should also find out what evidence the doctor will use to determine if treatment is working or continuing to work in the future.

Question: What supplements are contraindicated for those who have breast cancer, primarily dealing with menopausal symptoms, but if you could expand to any and all supplements that are contraindicted?

Dr. Borges: You should address the use of supplements directly with your doctor, because what may be OK for other women may not be considered OK for you depending on where you are in your treatment and what treatment you are currently receiving.

In general, supplements that contain phytoestrogens are contraindicated by most oncologists, as they may mimic estrogen in your bloodstream. Phytoestrogens (black cohash, for example) are often found in supplements that aim to reduce menopausal symptoms.

If a supplement were to behave like estrogen in your bloodstream, it potentially reduces the effectiveness of your therapy if you are on a medication like tamoxifen or an aromatase inhibitor. Also, if a supplement were to act like estrogen in your body, it could increase your risk of disease progression or increase your risk of recurrence if previously treated.

Even if your tumor was negative for the estrogen receptor, I still cannot say that using these products is safe. Many herbal products or other supplements have the potential to alter how your body metabolizes other medicines, which is why it is not possible to be global in providing an answer for all supplements.

It is very important that you do not underestimate the risks involved in taking supplements. Be sure to report all supplement use when you are asked what medications you are currently taking.

Question: A friend of mine who also has breast cancer highly recommends coconut oil as a vaginal lubricant. My gynecologist has not heard of this. Do you know anything about it its efficacy and if it would cause vaginal infections etc.?

Dr. Borges: Vaginal dryness is a very common and problematic issue many women face during or after breast cancer treatment. I have heard of gynecologists recommending various oils, even Crisco. You should try several things and see which works best for you. 

I have not heard specifically of coconut oil, but almost any dense oil will likely work. It is important you get the oil from a reliable source (in this case, I’m guessing the grocery store) where it comes with a label that clarifies the ingredients. 

Any oil could cause irritation as opposed to helping, so trying a small amount in a limited area first and making sure you do not have a bad reaction to it would make sense. I cannot think of a specific reason it would cause a yeast infection compared to any other oil. 

Question: What is the best way to manage fatigue? If I put in a regular day’s work, I will sleep for 10-12 hours that night.

Dr. Borges: As annoying as my answer is going to sound, the best remedy for fatigue is exercise. This has been shown in research studies, and more importantly, I see it every day in my own clinic with the ladies I take care of. 

Of course, it is really important to make sure there is no underlying medical issues going on that may be adding to the fatigue, such as anemia, iron deficiency or low thyroid function. Most often we do not find any of these causes, and it is just “cancer-related fatigue” from the treatment. The main difference between cancer-related fatigue and just being tired is that you DO NOT feel better after getting more rest. It is quite a vicious cycle. 

It is important for you to get a regular night’s sleep. Whether you are having hot flashes or night sweats that are waking you up or just insomnia, you need to ask your doctor how to handle them. 

After this is addressed, unfortunately, you still may feel tired for no good reason; this is the kind of fatigue that responds to exercise. I ask my patients to aim for a minimum of three hours of exercise a week, and for my younger patients, I’ll even say five to six hours a week. 

Almost any type of exercise will help. I find yoga to be particularly useful because it also tackles issues like concentration and stretching.  You can even do yoga at home with a video or DVD if getting to a class is a problem or not desired. In Colorado, we have some places that offer free or reduced cost classes for women who have had breast cancer. A class can help get you started and make sure you are going about it properly in order to avoid injury.    

Question: How can I control itching from Tykerb?

Dr. Borges: If you have a rash too, then your doctor can prescribe antibiotics. Otherwise, over-the-counter allergy medicine such as loradatine (Claritin), Cetirizine (Zyrtec) and diphenhydramine (Benedryl) can help.

Question: For managing mouth sores and acid reflux from chemo, aret here natural remedies such as probiotics, lysine, vitamin E oil or essential oils? Are there natural remedies that change hormones and alter chemotherapy?

Dr. Borges: My nurse recommends vitamin E oil to all our patients with mouth sores (dab it on),and many of them find it very helpful. Sucking popsicles or ice chips during chemo can also minimize mouth sores. The amino acid lysine has a number of reports about its benefits in preventing mouth sores; I am not sure how much it helps if they are already there.

I tend to think of probiotics as more helpful for the lower stomach (gas/bloating), but certainly they are safe to try for the acid reflux. Some patients use ginger-based remedies for nausea but they can sometimes worsen the heartburn, so it is a trade-off; you might want to avoid ginger if you are using it. Mint tea or peppermint tea can be very soothing for an acidic stomach. Milk can also help if you are able to drink dairy.

I usually ask my patients to avoid phytoestrogens, plant-based compounds that can mimic estrogen such as black cohosh and red clover, as how much they can interfere with chemotherapy or hormonal treatment is uncertain. There are definitely reasons to think that they could. Any chemical–—natural or man-made—has the potential to alter the metabolism (how a medicine is broken down) of your chemo or other treatment if it is absorbed into your body and processed.  St John’s wort and tamoxifen are clear examples. 

I recommend that if you want to use natural remedies, avoid them for 48 to 72 hours before and after each dose of chemo to try and minimize the effect they could have on how the body processes the chemo. If you slow down the chemo’s metabolism, you could potentially increase its toxicity. If you speed it up, you potentially lose the benefit of the treatment. 

It is super important that you list everything you are taking on your medication list with your doctor. If you are taking compounds that contain many ingredients and go by one trade name, then bring in the bottle or a copy of the label with the ingredients so your doctor is aware of it.

Question: I have bone mets and have been having headaches recently, so a brain MRI was ordered. A small meninginoma was detected along the lining of the brain, so my doctor is going to monitor it for changes. Meanwhile, I'm also noticing my scalp has been changing. I keep getting pimple-like sores on the crown of my scalp, regardless of what shampoo I use and if I wash my hair three times a day or every other day. Is it possible this meninginoma is causing scalp issues, or is it possible that this is a result of the meds trying to detox through my skin? (My skin on my body is dry with no changes.) I presently taking zoledronic acid (Zometa) once a month, duloxetine (Cymbalta), anastrozole (Arimidex), meloxicam (Mobic), calcium plus vitamin D, cetirizine (Zyrtec), omeprazole (Prilosec), and senna. 

Dr. Borges: I can reassure you that the meningioma is not causing your scalp issues. Meningiomas are a type of tumor that many people have and are not aware of until a brain scan is ordered. They can grow and cause problems by taking up space, but most often they stay as they were found and do not change.  

I also do not think the problem with your scalp is related to a detoxification process. Some women on anastrozole, which lowers estrogen in the body, can have rashes (including acne-like changes) due to the hormonal fluctuation. Why that would be on your scalp is not clear. 

It also sounds like you could be reacting to something that part of your scalp is touching, given how localized it sounds. The problem with sores or rashes is that they are really hard to tell what the cause might be without seeing them. I would schedule an appointment with one of your doctors to have it looked at. A dermatologist may be needed to find the right cream for it to heal.

Question: I have had mouth swelling and a severe sore throat. The doctor said to discontinue capecitabine (Xeloda) until my mouth clears up. It has been two weeks, and I still have a mild sore throat. I am wondering if I should restart or keep waiting until it completely clears up? I don't want to call my office because I feel like I am bothering them all the time.

Dr. Borges: I would strongly encourage you to call your doctor and find out what he or she would recommend. Your doctor may want to investigate further as to why your throat still hurts, or he or she may feel comfortable telling you to restart. You should not feel like you are “bothering” the staff to get the help you need to manage your cancer. You medical team is here to help you and make sure you get the best treatment possible. Your question is a really important one!

Also, if there is a reason why you have this feeling like you are bothering them, you should discuss it with your doctor. Occasionally clinic staff can interact with my patients in ways that I would rather they did not. It is never intentional, but some people need “coaching” on how to handle different scenarios. 

 If my patients do not tell me what is going on beyond my time with them in the exam room, I would not always be aware of issues like the one you have described. Open communication is a key factor in getting the best care from a clinic.

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