This article is about my own experiences with 3 different chemotherapy treatments, the side effects and how I dealt with them. I went through the following chemotherapy treatments:
- Adriamycin (also known as Doxorubicin, Hydroxydaunorubicin) chemotherapy
- Combination chemotherapy with Holoxan (also known as Ifosfamide) and Adriamycin (Doxorubicin)
- Combination chemotherapy with Gemzar and Taxotere (Gemzar is also known as Gemcitabine HCL or Gemcitabine hydrochloride and Taxotere as Docetaxel)
I have been diagnosed with cancer called Synovial Sarcoma in 2004. Surgery and radiation were the best options for my type of cancer at that time. In 2007 we decided to start with chemotherapy. I received 3 treatments with Adriamycin (Doxorubicin) given in 3-week cycles. This chemotherapy is often used to treat breast cancer. Unfortunately the treatment showed no effect therefore we decided to replace it by a combination chemotherapy combining Holoxan and Adriamycin. I received 5 high-dose treatments given in 4-week cycles. The treatment showed no significant effect. In 2009 we started with, at that time, a new combination chemotherapy combining Gemzar and Taxotere. This chemotherapy was given in 3-week cycles and I received the treatment for 12 months. The additional side effects of this particular treatment were nerve damages. The treatment was effective; however the extent of my neurological damages was the main reason why we had to end this chemotherapy.
Port-a-Cath (“portacath”, the “port”)
To start the chemotherapy treatments I needed to go through a minor surgery in order to install a portacath, a small medical appliance, which was used to inject the chemotherapy liquid. The port is installed beneath the skin, placed on my chest just below the clavicle (collar bone), and connects the port to a nearby vein. The veins in arms, which are usually used for traditional drips, are too thin and they would be easily damaged by the chemotherapy liquid. The port can be left in its place for years and can be used thousands of times. It can be used for blood transfusions, drips, blood draw. I am still using my port, installed in July 2007. The port is almost invisible and doesn’t restrict me in any way. It is important to maintain it, which means asking my nurses to flush it every 6-8 weeks if I am not using it.
Adriamycin (Doxorubicin) chemotherapy
My Adriamycin chemotherapy treatment was given in 3-week cycles. I needed to visit hospital for the treatment, which took only about an hour at the hospital. The treatment caused loss of hair, which started to fall out after about 14 days. Excessive vomiting, the type you can see in older films, is nowadays treated by different drugs, for example steroids. I could still feel sick from time to time, but I was able to manage it with medicine and adjustments to my diet.
Combination treatment with Holoxan and Adriamycin (Doxorubicin)
The combination treatment with Holoxan and Adriamycin (Doxorubicin) was given in 4-week cycles. To receive this treatment I had to be hospitalized for 5 days during each treatment. I was attached to drip for about 96 hours. The way this treatment is given can differ from hospital to hospital.
For Holoxan the body needed extra liquid, injected in form of drip (infusion), 2 litres every 24 hours, in addition to 2 litres which I had to drink every 24 hours. The Holoxan was given also in form of drip, also 2 litres every 24 hours. Altogether I received 18 litres of liquid during 72 hours. This meant that I spent a lot of time going to a bathroom and the bathroom visits kept me awake during the nights. The whole treatment was accompanied by high doses of steroids which made me restless. After the first 2 days in the hospital I needed a lot of support from my husband. He held me in his arms for hours and this was our way to calm me down.
Side effects of the Adriamycin and the combination chemotherapy with Holoxan
Both chemotherapies cause loss of hair. The side effects of steroids are increased appetite and puffiness. The puffiness shows especially in the face and is often described by the term “moon face”. The steroid-fuelled appetite can cause significant weight gain. Because I found it difficult to fight my increased appetite and hunger, I tried to manage the type of food I was eating; making sure the food was nutritious and avoiding sweets. There is an increased risk of developing diabetes during the chemotherapy and staying away from sweets was my way of helping the body to prevent it. The chemotherapy can also cause hormonal changes, such as menopause. Menopause has its own side effects, such as excessive sweating. Is the menopause reversible? My menstruation returned couple of months after the last chemotherapy cycle. When does the puffiness go away? My puffiness (moon-face) disappeared after about 6 months. Cancer and chemotherapy often causes malnutrition and specific vitamin and protein deficiencies. It is essential to monitor lack of essential vitamins, such as vitamin B1 (Thiamine), B2 (Riboflavin) and B6 (Pyridoxine), as the vitamin deficiency can cause serious complications. For example vitamins B1 and B2 help metabolize proteins and carbohydrates, which are essential for survival. The vitamin deficiency can seem unimportant, however it can become dangerous if unidentified.
Both chemotherapy treatments had a negative impact on my immunity causing an increased risk of infections. The immunity started to decrease right after the treatment and reached its bottom on day 8. Afterwards the immunity started to improve again. My blood was analyzed regularly and the values confirmed this development. I was told to come to the hospital straight away if I got a fewer above 38 degrees Celsius (100.4 degrees Fahrenheit) around day 8 when the immunity was at its lowest. And although I avoided people and even contact with friends during the critical days, I developed pneumonia twice. Avoiding infections is important because they are more dangerous during the chemotherapy. Other reasons for avoiding complications are the delays they can cause. Chemotherapy is most effective if it is given as regularly as possible, without delays. Therefore ask your doctor about how your particular chemotherapy works, the infection risk cycle, and the side effects. It is not unusual to receive some kind of immunity booster or/and blood transfusion if the body is too weak to recover on its own between the treatments.
Combination treatment with Gemzar and Taxotere
I received my Gemzar/Taxotere chemotherapy treatment between August 2009 and July 2010. This treatment was quite new at that time. The treatment was given in 3-weeks cycles (21 days cycles). I was given Gemzar on day 1, and Taxotere and Gemzar on day 8. Both treatments required only a short visit at the hospital. They were given within one hour. This time I already had my Port-a-Cath (portacath) and we could start with the treatment without a delay.
Side effects of Gemzar and Taxotere treatment
This treatment has one major side effect; it can cause serious neurological damages. It can also destroy nails on both hands and feet, which is painful. Other side effects are similar to those described in the paragraphs above:
- moon-face and puffiness
- increased appetite due to steroids
- weight gain due to steroids
- hormonal changes
- increased risk of infections
The Taxotere manufacturer claims that the patient does not need to lose hair. To avoid the hair loss I was offered to use a cold hat out of a freezer! Seriously. The nurses claimed that by wearing the frozen hat while I was receiving the chemotherapy liquid in a drip, which took about 1 hour, I would not lose my hair. I saw some patients with the hats but I never bothered. I just shaved off my hair as I did with my previous chemotherapies.
As for the nails, the Taxotere manufacturer claimed that by wearing cold gloves and socks from a freezer during the treatment you could avoid the damage. I was also offered a set with nail-files and a nail polish. I tried the frozen gloves and socks and took them off after 15 minutes and never tried again. The problem with nails started to show after 12 weeks. They started to dry out, got an uneven surface and started to break. I saw that the nails were damaged under the surface. I therefore protected the surface with the varnish. I was tempted to even out the surface but, luckily, I stayed away from the nail-file. Should I have attempted to even out the surface, I would most likely have damaged the very thin layer which was keeping the nail together. I also wore protective gloves when working, for example in the kitchen or garden. To my oncologist’s surprise, I managed to keep my nails.
Nails and Skin
Keep in mind that during chemotherapies the nails grow slowly and stop growing for several days in between the treatments, similar to hair. Hair grows also a little bit between the treatments, falling out after day 14. Protect your nails and do not cut them too short. Especially the toenails are sensitive. By cutting the toenails too short it is easy to develop a condition called ingrown toenail. I suffered of ingrown toenails on both feet during and for about 4 months after my Gemzar/Taxotere treatment. I never managed to prevent it. I just dealt with it by wearing bigger size shoes and treating my toes with alcohol and hydrogen peroxide solutions, which are normally available in a pharmacy.
The skin can feel dry during the chemotherapy. Moisturize your skin regularly. But try to find moisturizers without a perfume in them, as the smell can make you feel sick. I asked all my visitors to skip perfumes and perfumed moisturizers when visiting. It would be a shame if a perfume should spoil the visit.
5 months passed since I received my latest Gemzar/Taxotere treatment. I still suffer of strong pain in my joints, especially fingers and knees. The pain in fingers is strongest in the mornings. The pain in my knees makes it difficult for me to sit down, for example in a low chair or at the toilet seat, which is traditionally lower than chairs at work, or a chairs at a dining-room table. For that reason I have used an extra portable device to raise the toilet-seat at work and at home.
Chemotherapy and Diet
The food can taste and smell differently during the chemotherapy. Sometimes the taste disappears to the extent when you can only distinguish sweet and salty. It can be difficult to digest raw food (raw fruit and raw vegetables) and meat and eggs. Because you still need proteins, a good source can be yogurt, cheese, cottage cheese, and similar products. It is also important to keep fibres in the diet. Cooked or steamed vegetables could be a good source; I eat 2 tablespoons of crashed and soaked flax seeds every morning. Try to stay away, or lower the intake, of sweets and be aware (ask your doctor) about the risk of developing diabetes.
Chemotherapy and Weight
During the chemotherapy it is important to monitor the weight. Neither an excessive weight gain nor a weight loss is healthy. And never lie to your doctors about your weight. For example the chemotherapy doses are based on weight. A 10% change in weight, which is only 11 pounds (5 kilograms) for a woman weighing 110 pounds (50 kilograms), is a reason to change the doses. Therefore monitor your weight and inform your doctor about the changes.
Chemotherapy and Exercise
Ask your doctor about the exercise. I did exercise. However, whatever you do, do not risk hurting yourself! Low impact and moderation are the key words. Short walks, short swim, resistance band / rubber band exercises, stationary exercise bike, are some good options. And even here, think of the infection risk. Avoid crowded gyms or swimming pools.
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