Recurrence

Orchid65 said:

Neuropathy

What is neuropathy?

Neuropathy is damage to nerves (especially in feet and hands) that is most frequently a complication of diabetes, but can also be caused by chemotherapy, since many of those drugs are neurotoxic. The effects can be mild (numbness or tingling sensation) to severe (burning sensation that radiates from site of damage). The damage can be permanent, so you want to do what you can to prevent it from happening.

Prevention is possible, so don't not have the chemo for fear of this. I really wasn't prepared for this for my first chemo and got hit with it pretty severely after my first infusion and suffered for a long time with it. I got hypothermic ice slippers and mittens in time for the 2nd and subsequent infusions and my oncologist switched me off of the taxol to taxotere and I was able to get B12 shots monthly during the remainder of my infusions along with taking it orally. (I had found a couple of studies that shows B12 can help heal CIPN (chemo-induced peripheral neuropathy) and it seems to have, but it works glacierly slow.) I had residual buzzing in my feet that made falling asleep take forever until about a year ago when I started taking alpha-lipoic acid at someone else's suggestion and finally I seem to be ok. 

Orchid65 said:

Neuropathy

What is neuropathy?

Orchid, plenty of women who have the standard chemo for uternine cancer do not develop neuropathy, so I agree with the advice not to let fear of that keep you from doing chemo. Icing from the very beginning also seems to make a big difference for many women, and there is a lot of readily available information on how to do that. Although my center didn't offer it, they did everything possible to help me manage it myself. My guess is that before too long, most cancer centers are going to offer this as an option for their patients on regimens associated with chemotherapy-induced neuropathy. 

Orchid65 said:

Side effects

Are there other side effects of chemo?

Orchid, there are a lot of side effects possible but most people don't have all of them. Hair loss is very common but surprisingly not universal.  I had some diarrhea with radiation but a low-residue diet (which for me was mostly peanut butter crackers) helped during it and it subsided not long after finishing radiation.

There are a few different options for chemo so you should ask which ones they plan to use.  Likely carboplatin and taxol, but your doctor may have a different preference.  We had to attend a chemo class before starting, where the nurse went over a long list of possible side effects and tips to help cope.  For example, constipation is not uncommon right after the infusion, and many people find that taking a stool softener beginning the day before chemo helps avoid that.

Fatigue is very common  Let yourself rest, but if you can get outside for a brief walk it's likely to help.  Unlike many, I didn't really have trouble with nausea from chemo.  They gave me a drug called Aloxi with the infusion and it was supposed to last up to five days to prevent nausea, which gets you past the worst of it.

Your doctor or a chemo nurse will likely go over the expected side effects for your particular drug combination and help you know what to expect and how to handle it.  Best of luck!

Orchid65 said:

Peripheral neuropathy

Thank you for the comments.  Can you tell me what peripheral neuropathy is?

peripheral neuropathy is damage to the nerves in your hands and feet, leaves you with numbness and stabbing pains (like someone stabbed an ice pick into your toes).  I had heard about the cold mitts, and I suspected that they wouldn't keep my hands and feet cold enough.  What I did was this: I took quart plastic takeout soup containers and plastic shoebox containers.  I filled them with cold water and ice, and my husband periodically scooped out water and added ice.  I started the chill 15 min before they began the Taxol, and I didn't stop until I was done with the carboplatin.  I have NO neuropathy in my hands, and only a tiny bit in the ball of my left foot.  I realized, too late, that when I would doze off, my foot would rest on the bottom of the plastic box, and get warmed.  So I would recommend nesting two boxes, one with ice, one with ice water, so that there is surely ice against the sole of your foot, if it rests on the floor.

The idea is that the ice water causes the small blood vessels in your extremities to constrict, thus reducing the circulation carrying the Taxol to your extremities.  I used a heating pad on my midsection, otherwise I would have been shivering.

Orchid65 said:

Chemo

Do you know if there is a standard treatment of Chemo drugs used?  Are there different strengths of the drugs use?  Do you know if cancer in one lymph node can easily spread to the entire lymphatic system?

Yes, your cancer is very likely to spread.  Surgery, chemo, and radiation may very well stop it, or at the worst, delay it, giving you more years of quality life.  Carboplatin and Taxol are standard.  Radiation will be recommended for you also.  I would recommend you have everything they offer.

Orchid65 said:

Side effects

Are there other side effects of chemo?

Expect to lose your hair.  It all grows back.  Surprisingly, most people do NOT lose weight.

Orchid, I was SO terrified of chemo.  But it wasn't as bad as I was afraid it would be, you get through it pretty quickly, and then your hair grows back and you forget all about it.

Orchid65 said:

Side effects

Do the side effects of diarrhea, mouth sores and nausea go away once the treatment stops and neuropathy may last long term after the chemo treatment? 

In the 4 years that I've been here, it seems like constipation is the issue from chemo and diarrhea from radiation. Neither is fun (major understatement!), but there are ways to minimize or cope with them here. 

Mouth sores are usually preventable. I was advised to avoid spicey and acidic foods and rough foods like toast and to swish with a tsp. of baking soda dissolved in 8 oz. of water after eating. Never had a hint of oral soreness. There are lists online of acidic vs alkaline foods that help. 

I initially thought I was having some nausea that actually turned out to be heartburn from the chemo. It wasn't like acid-reflux because it was just a heat sensation I felt in my upper chest rather than acid coming up from my stomach. It dawned on me what it was when I found myself holding an ice pack over it. (It seemed like I was always icing something to feel better during my low points-I get migraines and it's been my go-to pain relief for a long time) A wedge pillow and pepcid AC helped with that.

Those issues resolve when you get through the aftermath of the last infusion. Neuropathy can be permanent, but not necessarily as intense as it initially is. It can be beaten back if you prevent it from starting or getting worse. A lot probably depends on what's going on with your body before chemo like if you have diabetes or kidney issues, for instance. So hassle or not...be prepared to ice your hands and feet starting at least 20 minutes before infusions and for another 20 minutes after. I was icing when I got home, too, for pain relief when my feet were up (I had 4 pairs), so that prolonged chilling might have helped, too, but it can be hard to do if your feet aren't on fire like mine were.

MAbound said:

We are all different

We are each unique in how respond to everything that we go through, so what worked for me won't necessarily work for you, especially since you stuck with the taxol and I didn't and I started everything just before the 2nd infusion. I didn't get progressively worse, but it took a long time before I noticed anything starting to lessen.

I didn't hear about the neuropathy side effect until just before I was on my way to the infusion room when the chemo nurse said that I might feel "a little numbness or tingling" in my hands or feet. Hah! It was more like I had my feet stuck in hot coals and couldn't jerk them out for even a second. The burning extended all of the way up my thighs. My hands were numb and tingly, but not burning. I could sort of bear it during the day as long as my feet were on the floor, but it always intensified to unbearable the minute I put my feet up or went to bed. It didn't matter how exhausted I was, I didn't sleep for weeks until I got those ice slippers. They helped me to survive for the months and months it took to notice improvement starting to happen. I'm almost 4 years since I finished chemo, so it took a long, long time, but I'd say the worst of it was the first two years.

Thank you for the information. Although we are all different, it has cheered me immensely to hear from someone who had severe neuropathy and now doesn't. My neuropathy started out worse in my hands than  my feet, but after the session in which I had only carboplatin, my feet became much worse, although, thankfully, the kind of intense pain you describe only lasted for a couple of months after the final chemo, and it never extended upward from my feet.  Now they burn intensely only when I'm not able to have two acupuncture sessions a week, and I use a CBD balm from Young Living that works well against the burning except for the worst nights. You are so right about the difficulty falling asleep. 

My gyn/oncologist told me before I started about neuropathy as a common side effect. He and the nurse practitioner  tell all their patients ahead of time so that we can alert them after the first chemo if we have even the slightest numbness or tingling. I wish I'd known about icing before I had that first, unprotected chemo. I did some research when I had the first symptoms and found the cold mitt study. I spent hundreds of dollars on the mitts, since they have to be changed several times during each infusion, and now I'm fairly sure that using ice/ice water, which would have been free, would have had a better result. 

I'm very happy for you that your neuropathy is in the past since it was so very painful. 

Thanks again,

Molly

Molly110 said:

Orchid, I didn't experience

Orchid, I didn't experience any side effects from chemo except neuropathy and hair loss. 

It sounds like you are pretty frightened about chemo. I was terrified, so much so that I seriously considered not doing it, even though my gyn/oncologist told me I was risking death without it. (He didn’t pressure me in any way – just leveled with me about the aggressive form of endometrial cancer that I had.) I was so anxious and frightened about the chemo that I couldn’t eat or sleep during the time between my surgery and chemo. My doctor and nurse practitioner had both told me to let them know how I was doing, so I did, and they prescribed an anti-anxiety med, which I took until after my second chemo. Don’t hesitate to tell your care team if you’re afraid or anxious – they can help you cope.

As it happened, my fear and anxiety was mostly fear of the unknown, coupled with a basic misunderstanding of chemo, which I expected to be like the breast cancer chemo that loved ones had gone through. I especially feared the nausea and wondered how I could work so sick. My gyn/oncologist told that me that the drugs I would get would be very different, and – for me – he was correct. I was not nauseated for even a moment, perhaps because anti-nausea drugs were included in my infusion and the post chemo steroids also act to prevent nausea. He prescribed the anti-nausea drug that ZsaZsa mentioned, and I got the prescription filled but didn’t need to use it. As others have said in this thread, I think it’s a good idea to take your care team up on whatever is offered until you know you don’t need it.

I did have a reaction to Taxol -- it's common for people to react to Taxol during the first minute or so of the infusion although not to the extent that I did. Boy, did the team spring into action. A few seconds after the infusion started, my face felt heated and turned bright red and I felt for a second that I couldn't breathe. Literally, before I got the words out, my wonderful chemo nurse stopped the infusion, which instantly solved the problem, and in those few seconds, the room filled with people quietly, calmly, and efficiently taking care of everything. Before they restarted the infusion, they  added more IV meds and slowed down the infusion rate and all was well. I didn't have the reaction again because they added a day of oral preventive drugs the day before future infusions. I include that experience here to reassure you that oncology teams know how to handle whatever comes up. Throughout my care, I was impressed by the expertise, kindness, and availability of my oncology care team. It made all the difference, and I hope you are able to have the same confidence in your team.

Since the carbo/taxol infusions take more than half a day, I took infusion days off work. I worried a lot about how I could keep working through chemo, but other than infusion days, I was able to comfortably work throughout. Infusion days themselves were not difficult because the pre-meds made me sleep through them. I had a friend come with me the first couple of times to help with the cold mitts, but my wonderful chemo nurse and chemo techs were great about waking me to change the mitts/slippers, so I stopped having a friend come.

Between the 5th and 6th chemo, I did experience the fatigue that my treatment team had warned about -- a sort of combination of weakness and tiredness that I'd never experienced before. It's common for the carboplatin/taxol combination to eventually cause anemia, which I think (but don't know for sure) is what causes the fatigue. It took about a month after the final chemo before I started to get my energy back. The advice from the women on this board was very helpful, which was to rest more and sleep and not try to fight it. For the 6 weeks or so that I felt fatigue, I worked part of the day in the office and part of the day at home. If I had a job that required me to be on my feet all day, I think I would have had to take leave.

I also followed the advice from women in this group to let my friends help me out. MAbound is so right about how letting family and friends help you makes them feel less helpless. 

Although not everyone loses her hair on Taxol, I agree with ZsaZsa that you should expect to. Most women do, and if you don’t, then it will be a lovely surprise. I think it would be devastating to lose your hair if you didn’t expect to. I was very lucky to have the support of my stylist, who is like a daughter to me, and another woman in the salon who was very knowledgeable about wigs and able to advise me and even order several for me to try on in advance. Don’t feel bad if you are sad or angry about losing your hair. You have the right to feel that way. In my experience, hair loss is the one thing that other people don’t understand. I stopped trying to talk about it when I realized that I wanted to kill the next person who told me “it will grow back” or “why don’t you rock the look?”

I am so grateful that my family and friends encouraged me to do the chemo when I was leaning toward not doing it, even though I knew the risk of choosing not to. It was so much easier than I expected it to be. I hope that yours is too, should you decide to do it and give yourself the best chance to survive and live your life.

 

Molly, I too had a reaction to my first dose of taxol. The remedy was stop the infusion, give me more steroids pre-infusion (which were gradually tapered off ) and I successfully got my infusion the next day. Like you, I was impressed with the staff's reaction. At the first sign of problems there were at least 7 nurses on me. I felt I was in excellent hands. Those infusion nurses are angels on earth.