Breast Cancer Side Effects

Hi Brandi, I did not take this, but I took Arimidex and had such severe side effects that I had to stop. Reactions to these meds vary; some women do fine on one drug and have reactions to others. I told my doctor right away, she had me stop for a while, tried again, but was always immobilized with pain. It can be dangerous to stop a drug without supervision, as some meds can cause a rebound effect, so check with your doctor. You can look up side effects of fareston here, and search for any other med: www.rxlist.com/fareston-drug.htm
Good luck!

The standard recommendation is for five years of aromatase therapy based on our present knowledge and the results of numerous large clinical trials that compared aromatase inhibitors to tamoxifen. It is also an acceptable strategy to initiate therapy with tamoxifen and switch to an aromatase inhibitor after 2 to 3 years to complete a total of five years of therapy. Based on evidence from a large clinical trial, it is also acceptable to switch to tamoxifen from an aromatase inhibitor; this is an option for individuals who are experiencing difficult side effects with aromatase inhibitors.

I had at least three sinus infections during cancer treatment. The most effective treatment was a daily sinus wash containing a prescribed antibiotic, plus an oral antibiotic, plus an allergy drug (such as claritin) to help dry out the sinuses. But even this cocktail of treatments took over a week to resolve the infection.

My sinuses are great at last. I just had a cold last month and for the first time since cancer treatment it didn't turn into a sinus infection.

I've had lymphatic massage and a compression garments for my left arm to help with my lymphedema. »Interestingly enough, it was my osteopath who started loosening some on my arm and pectoral muscles that did the best job of all. I was an inch bigger in the upper arm before I saw him a few times and after a few weeks both arms were back to the exact same size. Now I wear my compression garment only for airflight. What a relief and do I need to tell you it's not very sexy during summer time! LOL

Sentinel node dissection reduces the rate of upper limb lymphedema, but the following breast irradiation brings with it an increased rate of breast lymphedema, which is more difficult to manage because of the absence of a muscle pump to aid in the draining of affected areas, the difficulty in providing compression, and the severe risk of recurrent infection (delayed breast cellulitis).

My (unwanted) friend Twang Arm came into being the day of my mastectomy. I had 15 lymph nodes removed and had significant cording as a result. This was something I had been totally unprepared for.

I found that each chemo cycle made my arm more stiff and painful and it was difficult to progress much in the months following surgery. Then radiation over 5 weeks contributed further to the restricted mobility and pain/discomfort.

One of the disadvantages of being in a remote setting means that I did not have access to appropriate physiotherapy which has meant that I have not regained as much mobility in my arm as I would have liked. However, there is definite improvement. I am no longer in constant pain, the numbness has improved considerably and I no longer have such a strong "pulling" sensation.

I have done the recommended physio exercises at home, but without professional guidance I don't think they have been as effective. Without supervision it is too easy to this that I am moving my arm further when actually I am subconsciously standing on my tiptoes! ;)

The main difference though has been by my determination to swim regularly. increasing distances and increasing in speed. Throughout chemo I swam regularly, even when my legs were so weak from Taxotere that I could hardly stand. At that I could swim a kilometre (very very slowly!) but not walk up more than 10 stairs without my legs giving way!

I now swim daily (30 minutes before work) and longer distances at weekends. Twang Arm is strong but I still have restricted mobility. It is greater than before but not back to "normal".

I plan to have an intense physiotherapy "holiday" with a friend (out of country) as she has an excellent physio who has sorted out her post surgical arm very successfully.

If you have any suggestions I would be delighted to hear them.

Thanks

You've hit upon a very important topic and one that will become more and more challenging as the number of heavily treated survivors continues to rise. At the time of my treatment the physicians admitted they weren't sure what kind of long-term health issues I would face but felt the only way to even hope for survival was very aggressive treatment.

Bone loss associated with chemotherapy induced early menopause is problematic. I've taken calcium, Vit D and tried to walk regularly in an effort to keep my bones strong. Unfortunately that hasn't been terribly successful but has helped some. I tried an oral bisphosphonate but developed esophageal problems. Given some of the issues with IV bisphosphonates I've been reluctant to try them and my insurance doesn't cover them.

As a nurse, I'm hesitant to add medication to deal with those issues unless there is no other choice. Joint pain escalated to the point of needing an anti-inflammatory agent but again, walking regularly does help. Hot flashes can be an issue. Again, I tried an anti-depressant for a while and decided to keep a dietary record to determine if there were dietary triggers and have found some success changing diet rather than medication. Getting adequate rest and hydration seem to help as well.

I now have extreme sun sensitivity so limit my sun exposure and when out always use a 45-60 SPF sun block, sun glasses, hat and sun-protective shirt.

Often it's hard to know if symptoms are treatment related or simple part of the aging process. Following extensive chemotherapy it does seem that survivors may experience unexpected consequences and physicians aren't sure how to manage those.

Keeping active has been useful for me and having an understanding oncologist who will listen and explore ways to help me deal with continued questions related to my treatment.

Breast cancer survivors can have pain that lasts for several years after treatment. There are many factors that play into this, including the type of treatment (surgery and chemo) and the use of hormonal drugs like tamoxifen. (http://www.ncbi.nlm.nih.gov/pubmed/21656272). You don't say where the pain is, but generic versions of tamoxifen have been associated with joint pain (arthralgia). Interestingly, the brand name drug (Nolvadex) does not seem to cause those symptoms(http://www.ncbi.nlm.nih.gov/pubmed/20347307). The other hormonal drugs,called aromatase inhibitors, are also associated with arthralgia (http://www.ncbi.nlm.nih.gov/pubmed/21249443).

Lymphedema is a major problem , however its incidence has fallen dramatically with the sentinel node biopsy technique. It will continue to fall with results of a recent study demonstrating no recurrence or survival difference in patients with two positive nodes whether they did or did NOT have a full node dissection.

Reverse Axillary Mapping is a brilliant idea (in a string of brilliant ideas) from Dr. Suzanne Klimberg - a professor of surgery at the University of Arkansas in Little Rock. In addition to mapping the breast to find the sentinel nodes that drain the breast, she thought 'Why don't we map the arm lymphatics at the same time and avoid injuring them?' This decreases the chance of getting lymphedema of the arm (swelling caused by extra fluid in the arm because the outflow has been disturbed). In her series of patients, she has a very low incidence of arm swelling.

The technique involves injecting a small amount of blue dye in the upper inner aspect of the arm. The blue lymphatics that drain the arm can then be identified and avoided at the time of sentinel lymph node biopsy (unless clinically full of cancer). The breast sentinel nodes are identified by injecting the breast with a radioactive dye that drains and makes the sentinel nodes slightly radioactive. These radioactive lymph nodes are identified with a gamma radiation detector and removed at the time of surgery.

The most debilitating long term side effect is FATIGUE. I put it in allcaps because it is a beast! The term "fatigue" doesn't come close to evoking what it feels like.

As far as I'm concerned, there should be another, much more ominous sounding word to describe it, because one of the things that makes fatigue even more debilitating is that (at least for me) when trying to explain what it means to people in my life I've often felt like I'm being a big baby who can't deal with being "tired." :-)

Well.... if you've ever experienced cancer-related fatigue, you know that it's got nothing to do with "tired." The best night's sleep or nap in the world won't make your fatigue go away, whereas it will help you feel less "tired," if "all" you are is tired!

I've learned the very hard way that coping with fatigue is a long-term effort. It requires accepting that you are experiencing it, noticing when you are doing too much, learning how to conserve energy, learning how to not be mad at yourself for not being up for tasks like you used to and so on. It requires learning to be patient with yourself, learning to pay attention to your body and really take care of yourself.

Also, it can sound counter-intuitive, but all my docs have told me there's scientific evidence to back this up and I've felt the benefit myself: exercise helps alleviate fatigue. Just don't go crazy like I did and push yourself too hard!! As one of my medical team members told me: start with a 5-minute walk. That's it. Just 5 minutes. Maybe in a few days, add a couple of minutes, and keep building slowly over time until you're able to sustain more and more. The turtle wins again!

To understand lymphedema, an understanding of the lymphatic system is important. As was explained in more detail in an separate answer, the lymphatic system is a vast network of pipe-like structures (called vessels) that collect fluid from the spaces around our cells and return it to the circulatory system. The system is 'closed', like the plumbing in a house.

Lymphedema (lymph= the fluid in lymph vessels; edema=swelling) happens when the lymphatic system gets damages. When there is damage to the 'plumbing', the fluid can leak out. Instead of getting put back into the circulatory system, the fluid that leaks out of the damaged vessels accumulates in the area of the leak. This can occur in the arms, legs or even abdomen.

What causes the damage? There are several causes. One is physical trauma caused by an accidental injury, or in the case of cancer, surgery. Surgeons often remove lymph nodes during cancer surgery as a way of detecting if the cancer has spread. To reduce the risk of lymphedema, surgeons can now remove far fewer lymph nodes than in the past (see Sentinel Lymph Node Biopsy). Removal of lymph nodes causes damage to the system. Radiation can also cause damage to lymphatic vessels.


Learn more about lymphedema causes, prevention and treatment and watch a documentary about lymphedema: http://www.cancerquest.org/lymphedema-introduction
Watch a documentary about sentinel lymph node biopsy: http://www.cancerquest.org/sentinel-lymph-node-biopsy