9/23/19: Oncology Nurse Informational Appointment

Sooooo much information. 

I have to credit the nurse for being so knowledgeable and reassuring and helpful in delivering all the details. This post is going to be TMI for most people, but since this blog is how I'm processing and documenting my treatment for myself as well as for others, I'm going to lay it all out. 

First, I need to clarify my course of treatment. I am getting chemotherapy (Taxol), targeted therapy (Herceptin), and hormone therapy (Lupron and Tamoxifen). All of it is preventative because I am NED (No Evidence of Disease). The nurse was very clear to say that breast cancer treatment is personalized to the specific patient's needs, so my treatment plan should not be compared with another patient's course of treatment.

Ken came with me to this appointment. We were taken to look at the infusion room. Each patient has a private, curtained-off area. There's a comfy recliner for me, an extra chair for company, and a TV. 

I will start Taxol and Herceptin on 10/4. I will have weekly infusions for 12 weeks. Each visit I will get blood work, pre-medications (to prevent possible allergic reaction), Taxol, then Herceptin. The first treatment is expected to take 4 1/2 hours. They will deliver the Herceptin very slowly at first to monitor for complications, and if all goes well, they may be able to administer it more quickly in subsequent weeks. So towards the end, treatment might be "only" 3 hours.

Chemotherapy

The reason my chemotherapy is considered "light" is because I am only getting Taxol (chemo usually involves multiple drugs), and I'm getting a very small dose of it. 

At the start of each treatment, my port will be "accessed", which means they'll insert a needle into it. Since the port will be under my skin, this procedure sometimes hurts. I will get a prescription for lidocaine-prilocaine, a numbing cream, which I can apply at home before leaving the house. This medication is optional, it's only for comfort.

I will get blood taken using my port. The blood work will check for three things:

• White blood cell count - White blood cells help the immune system fight infections. If the count gets too low, I might be especially suspectible to infections.  
• Red blood cell count - Red blood cells deliver oxygen to body tissues. If the count gets too low, I might be anemic. In a severe case, I might need a blood transfusion. (They would use blood from the Red Cross.)
• Platelet count - Platelets help your body form clots to stop bleeding. If the platelet count gets too low, I could be at risk for serious bleeding.

If any of these counts gets too low, they might decide to hold off on treatment and not do chemo that day, or they might decide to lower the chemo dose. They won't automatically give me my blood work report, but the nurse said I can ask for it if I want it. 

They will also use my blood to monitor my liver, which processes the Taxol. Since it's best to have my liver at full functioning capacity, there are guidelines to not drink alcohol the day before or the day of treatment. I might just refrain altogether, just in case.

After getting blood work, I'll be given pre-medications to ward off an allergic reaction to Taxol. The pre-meds all work as antihistamines.

• Benadryl - Side effects include sleepiness and dry mouth.
• Steroid - Side effects include flushing and "feeling wired", which means I might have trouble sleeping that night. 
• Pepcid

Because of the "feeling wired" side effect, I will be given a prescription for lorazepam (name brand Ativan). It's usually given for anxiety, and causes sedation, so I could take it if I need help falling asleep. (If you're keeping track, that means I have a prescription to address a possible side effect of a pre-medication of the actual chemotherapy...) It is addictive, but my dose is very low, and the nurse said I could safely take it a couple times a week. This medication is meant to be taken as needed, and since I am fortunate to not have to work during chemo (i.e., I don't have to keep a strict sleep schedule), my inclination is to avoid taking it if possible.

In discussing side effects, the nurse was careful to point out that I may get side effects, but I may not! Every patient is different, so I shouldn't go in expecting side effects; it's just good to be informed.

The Taxol infusion should take about an hour. Possible side effects include:

• Nausea - Low risk. Lorazepam can also be used to treat chemo-induced nausea and vomiting, so I may find I need to take it for this reason. However, I can still first try more simple remedies, like saltines and ginger ale, at the first sign of queasiness. Also, I will be getting a prescription for prochlorperazine maleate, an anti-nausea medication that I can take as needed.
• Hair thinning - Because I'll be getting a small dose of Taxol, the nurse said I should expect visible hair thinning, but not complete hair loss! Yay! I don't even warrant a presription for a wig, which some patients do get. She said hair generally grows back in the same length of time as the treatment; so in my case, after 3 months of treatment, it might take 3 months for my hair to grow back completely. 
• Peripheral neuropathy - This is a fancy way of saying tingling and numbness in my fingers and toes. It is cumulative, so I may get tingling in 1 or 2 fingers the first week, and then in 4 fingers and a toe the next week, etc. These sensations should wear off by the next treatment. If not, they may decide to hold off on treatment and not do chemo that day.
• Heightened sense of smell - Could act as a trigger for nausea. May want to eat food at room temperature to decrease odors. May affect appetite, so may want to eat smaller portions more frequently.
• Modified sense of taste - Food might taste metallic. Can try to counteract with additional seasonings. 
• Mouth sores - I should keep good dental hygiene, and not use alcohol-based mouth wash, which can dry out the mouth. If I do get sores, I should use a baking soda rinse consisting of 8 oz. of water and 1 tsp baking soda; have it on hand to rinse and spit frequently.
• Fatigue - May results from the chemo itself, or from the lack of sleep due to chemo, or from being emotionally exhausted from dealing with cancer. 

I should keep track of symptoms and report them every week. 

The nurse also gave me general suggestions and guidelines for things to do while getting chemo.

• Stay hydrated - Drinking plenty of water serves lots of purposes, from preventing mouth sores to maintaining a healthy liver.
• Maintain normal activities - Despite fatigue, I should try to remain as active as possible.
• Walk - I should get physical activity recommendations from my physical therapist. 
• Get a flu shot - I'll get it from the Cancer Center.
• No dental cleanings - Lots of bacteria involved in the mouth, so best not to take the risk with potentially compromised immune system or higher likelihood of bleeding. 
• Be vigilant about infections - Wash my hands thoroughly or use hand sanitizer; avoid touching my face and eyes with my hands; avoid social interaction with people who are or have been sick; if around someone who may be sick, wear a surgical mask (can be purchased at CVS); check my incisions and port site and be on the lookout for redness or tenderness; call the doctor (even page the doctor on call if it's off-hours) for any fever over 100.5 F.

Targeted Therapy

While chemotherapy indiscriminately works on all cells (hence all the side effects), Herceptin targets the HER2 receptors on cancer cells and blocks them.

There are relatively few side effects, but the big one is that it might weaken the heart. Symptoms would include swollen legs and shortness of breath.

Herceptin is the reason I'm getting a baseline echocardiogram. I will get an echocardiogram every 3 months while on Herceptin to check my heart function. If my heart weakens, they might stop the Herceptin.

Hormone Therapy

I will get my first Lupron injection on the same day I start chemo and targeted therapy.

Lupron can be given every month or every 3 months, but the nurse wasn't sure which dose I would be getting. I will need to follow up with my medical oncologist.

Lupron suppresses ovarian function, so I will be in chemically-induced menopause. Natural menopause occurs gradually, but it will happen instantly for me. I will definitely experience hot flashes, and maybe also insomnia, mood swings, trouble losing weight, and vaginal dryness. The only potentially good thing is not having any more periods. (If I have any bleeding, I should call my OB/GYN.)

Tamoxifen is a daily pill that I won't start until after chemo ends, so we really didn't talk about it at all, since it's not an immediate concern.

I am not clear on how long I will be on Lupron and Tamoxifen, so that's something I need to ask my medical oncologist. I think it might be until natural menopause, which usually occurs around age 50. The nurse said it's so far in the future that I shouldn't worry about it now, but at some point they will do a blood test for hormones to see if I'm in natural menopause.

The nurse did offer me some Hibiclens for my port placement surgery, but I actually have half a bottle left over from before, so I didn't take it.

Finally, the nurse gave me the name of a social worker, who I can contact if I want to join a support group, or need help talking to the kids. She said the most common time to feel most affected is actually at the end of treatment, because then you finally lift your head up, and you're not sure what to do anymore. At this point, I can hardly imagine that position, because I am so in the thick of it now, but it's a concept I have seen before: