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Recurrence

Orchid65
Posts: 33
Joined: Feb 2020

I had total hysterectomy in January, internal vaginal brachytherapy in March and now found out the cancer recurred in a para-aortic lymph node.  Surgery is scheduled for June 29th.  Doctor says I may need follow up chemo and radiation therapy.  I am not looking forward to this. Has any one had any experience with integrative treatments?  Has any one heard of Chlorine Dioxide Ion to treat cancer?

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

I have no experience with other treatments, but I'm sorry you  have to deal with a recurrence already. Chemo and radiation can be hard, but most find them more doable than they expect. May I ask how you came to find out you had a recurrence?

Orchid65
Posts: 33
Joined: Feb 2020

My Radiation oncologist had found a lung nodule on my CT scan just before my hysterectomy surgery in January.  The doctor wanted to see if there was any change in the nodule, and had me scheduled for a CT scan on May 14.  There was no change in the lung nodule, but she found a growth in the left para-aorthic lymph node.  She had me have a PET scan a week later.  She thought it was cancer and recommended radiation and chemothrapy.  After conferring with another oncologist, they thought that surgery was the best option. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

If you opt for radiation, be sure to take nausea medicine before. I was radiated high because I also had that positive lymph node. Because it's so high, can cause nausea. 

Orchid65
Posts: 33
Joined: Feb 2020

So nausea can be caused by radiation as well as chemotherapy?

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Yes, if you're radiated that high. I went in for what I thought was my "fitting" but they radiated me that same morning. My nausea was horrible. But when I took the Zofran in advance, no problem. Good luck. 

zsazsa1
Posts: 553
Joined: Oct 2018

Orchid, I'm so sorry to hear this.  I was worried all along that this would happen, because you had a high-grade tumor located in the fundus, with lymphovascular invasion.  Surgery, followed by chemo and radiation, I presume.  They could very well get this under control for you.  The things that I was glad I'd found out beforehand, or wished I'd found out beforehand:

Ice your hands and feet before and during and even slightly after the infusion, if you're having TAXOL.  I used a heating pad on my abdomen so I wouldn't freeze, and I plunged my feet and hands into ice water.  Hopefully, your cancer infusion center will have the cold booties and gloves for you to wear, but ice water worked well for me.  Your partner will need to make sure hands and feet are being kept cold while you fall asleep from the benadryl pre-treatment.

If you don't have an allergic reaction, ask the oncologist to decrease your steroid pretreatment if possible, so you're not hopped up for days afterwards.

A week before the radiation begins, start on a probiotic.  I think I used Culturelle, but there are others, too.  It made an immediate difference in the radiation-induced diarrhea for me.

I'm so sorry you're going through this.  I'm very hopeful that the treatment will help.

I never heard of using Chlorine Dioxide Ion, but I looked it up, and it sounded like there was no evidence of efficacy.

Orchid65
Posts: 33
Joined: Feb 2020

Thank you for the suggestions.  I will look into them as the time draws nearer for these treatments.

Molly110
Posts: 187
Joined: Oct 2019

I'm so sorry you have more treatment to undergo and hope it is smooth sailing. I finished chemo in mid January and want to encourage you to follow ZsaZsa's advice if chemo is part of your treatment and includes Taxol or related drugs.  Despite using the cold mitts, which my center did not provide -- I had to get them myself -- I developed pretty serious chemotherapy-induced peripheral neuropathy.  If I'd known then what I know now, I would do just what ZsaZsa did and immerse my hands and feet in ice water, as I think that gets them colder than the cold mitts. 

 

Everyone is different, of course, but if it helps to hear this, the actual experience of the chemo treatment rounds was not painful or difficult for me. I expected it to be and was so terrified that I almost chose not to do it.

 

All good wishes to you,

Molly

 

Orchid65
Posts: 33
Joined: Feb 2020

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

zsazsa1
Posts: 553
Joined: Oct 2018

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.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2881
Joined: Mar 2013

Orchid, I am sorry to hear this.  Why are you asking about chlorine dioxide ion?  Here is a link with some information.  After reading through it, it does not apprear to be a treatment for cancer, so please be careful of anyone advising it, and I would suggest asking your doctor.  

https://www.chemicalsafetyfacts.org/chlorine-dioxide/

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the link.  I forwarded to my two aunts that are taking it now.  They had recommended it to me.

MAbound
Posts: 1106
Joined: Jun 2016

Orchid, I am so sorry that you are having a recurrence so soon after your frontline treatment. While none of us have ever looked forward to chemo and radiation, most have found it doable, especially with the help of each other. We'll be here for you.

The thing to keep in mind is to speak up about symptoms as they occur right away. Do not try to suffer through the least thing except fatigue (which you should give in to). Your oncologist and the chemo nurses have many tricks in their bag to help you to cope with what comes up and there is a lot of experience here on this board to draw from.

I think all of us can agree on the critical importance of icing hands and feet during infusions to prevent neuropathy. Your doctor can also change the drug used (Taxol is the go-to to start, but there are others equally effective they can switch to) or its dosage or infusion rate if that doesn't work, so be sure to let them know how you are doing when that first dose kicks in. 

 

 

Orchid65
Posts: 33
Joined: Feb 2020

Thank you for your comments.  I will keep them in mind.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

And be sure to take the nausea meds prophylacticly. Don't wait to get nauseas. 

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the tip.

zsazsa1
Posts: 553
Joined: Oct 2018

Oh yeah, make sure you have ondansetron on hand before your first chemo.  My first oncologist refused to prescribe it for me, saying I wouldn't need it, and boy was she EVER wrong.  My husband had to go out and get it for me in the middle of the night, but the stuff WORKS, within minutes.

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jan9wils
Posts: 152
Joined: Mar 2017

All good advice above. I am having terrible neuropathy and did not know about icing. Wish I had as it may have helped and certainly cannot hurt. I also had terrible mouth ulcers from chemo and if that happens there is a good compound that can be prescribed for you. 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

During chemo I was very careful to rinse my mouth with the baking soda/Salt\water mix recommended every time I ate something and fortunately had no problems with ulcers. 

Orchid65
Posts: 33
Joined: Feb 2020

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?

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

The standard chemo for endometrial cancer is paclitaxil and carboplatin, but there are other drugs and combinations. I like this reference site:

 

https://www.cancertherapyadvisor.com/home/cancer-topics/gynecologic-cancer/gynecologic-cancer-treatment-regimens/endometrial-carcinoma-treatment-regimens/

 

*IF* you're comfortable with medicalese, I like to go straight to the NCCN cancer treatment guidelines. You have to create an account, but it's free:   https://www.nccn.org/professionals/physician_gls/default.aspx

 

The regimens listed at both places are the same.

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the link.

zsazsa1
Posts: 553
Joined: Oct 2018

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
Posts: 33
Joined: Feb 2020

What is neuropathy?

MAbound
Posts: 1106
Joined: Jun 2016

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. 

Molly110
Posts: 187
Joined: Oct 2019

MAbound, by "finally seem to be okay" do you mean that you no longer have neuropoathy? If so, I would love to know how far out from your last chemo you were when the symptoms went away. I've read that for some people it does go away completely, but I haven't heard directly from someone for whom it did go away entirely.

 

My doctor thinks my neuropathy will be permanent because it started early and progressed rapidly (which it sounds like yours did also.)  He wanted to switch me to taxotere, but I was reluctant because of other taxotere side effects that I feared more. (I did one cycle with carboplatin only, and had a severe whallop of neuropathy in my feet from the carboplatin, and I think the role of that drug in neuropathy tends to get downplayed because taxol is so associated with neuropathy.) I started acupuncture after my second chemo in the hope that it would allow me to stay on taxol, and going twice a week caused the neuropathy to drop off enough that I was able to do each of the next taxol cycles. My nurse practitioner told me about alpha lipoic acid once I developed the first neuropathy symptoms, and I've been taking 1200-1800 mgs daily since then. I've also been taking B complex since, but not specifically B-12. I will look into that. 

 

Six months after my final chemo, I'm still doing acupuncture twice a week to keep the symptoms manageable and still taking the supplements recommended by my team during chemo as havng possible benefit, and it would be lovely to know that sometimes neuropathy really does go away. 

 

Thanks for anything you're willing to share.

Molly

 

 

 

 

MAbound
Posts: 1106
Joined: Jun 2016

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.

Molly110
Posts: 187
Joined: Oct 2019

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
Posts: 187
Joined: Oct 2019

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
Posts: 33
Joined: Feb 2020

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? 

EZLiving66's picture
EZLiving66
Posts: 1469
Joined: Oct 2015

I will be cancer-free for five years on September 30th. I had Carboplatin and Taxotere which was supposed to not cause neuropathy. Five years later, I am still in pain. Both my feet for the most part are numb with burning and shooting pains, especially at night. The pain also goes up the outside of my left leg. At first, all my fingers were numb but now only my thumb and index finger on my right hand are and, thankfully, have no pain. I have chronic diarrhea and have tried everything - I use Imodium daily and adult diapers. All my finger and toenails fell off during chemo and have never grown back correctly - thank heavens for acrylic nails! 

All that being said, I'm alive. I have a very aggressive form of uterine cancer - UPSC, and, knock-on-wood, it hasn't come back. I only made it through three chemos when I had a stroke and chemo was stopped. My oncologist/gynecologist told me he was saving radiation for WHEN it came back. 

Some women are lucky and have very few side effects. Others have the kitchen sink thrown at them. I wish I would have known about icing when I started the chemo!!

Good luck!!

Love,

Eldri

cmb's picture
cmb
Posts: 646
Joined: Jan 2018

Eldri,

First of all – congrats on your long-term NED status! I know you've had it really rough during and post-treatment - far worse than many of us. So getting close to your 5-year milestone is extra sweet.

But I wanted to share some information regarding diarrhea that I'm not sure I've mentioned here before. I've had diarrhea problems ever since I began taking Metformin back in 2014 for my Type II diabetes. The diarrhea was much worse during chemo and radiation and remained difficult even after treatment ended.

About 1 ½ years after my treatment ended, I started having stomach aches and pains. Fortunately, a CT-scan didn't show any signs of cancer, so I went to a gastroenterologist. He prescribed dicyclomine (Bentyl) for me to try. While this is for IBS, which I don't think I have, I've found that taking this once a day eliminated most of the stomach aches and pains I was having. It also really reduced the instances of diarrhea. I can go for weeks now without needing Imodium, which I was taking almost daily before.

My sister, who started taking Metformin a few years before me, was only able to eliminate her severe diarrhea problems by switching to a different diabetes drug. But I've been reluctant to switch from Metformin to another diabetic drug since there may be some cancer preventative benefit to Metformin (although I was taking it when I got cancer).

So if you haven't tried an antispasmodic like Bentyl yet, it may be worth a try to see if can help with your diarrhea problems.

And to the other newer members reading this post – I never experienced constipation after surgery or during chemo. For me, it was always diarrhea. As others have written, our side effects can be quite different, even when taking the same chemo drugs.

zsazsa1
Posts: 553
Joined: Oct 2018

The nausea, diarrhea, mouth sores all go away.  But the neuropathy can last for many years.

MAbound
Posts: 1106
Joined: Jun 2016

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.

Orchid65
Posts: 33
Joined: Feb 2020

Are there other side effects of chemo?

Fridays Child
Posts: 204
Joined: Jul 2019

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!

zsazsa1
Posts: 553
Joined: Oct 2018

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.

Molly110
Posts: 187
Joined: Oct 2019

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.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

LisaPizza's picture
LisaPizza
Posts: 340
Joined: Feb 2018

Exactly the same for me with the reaction. I was scared to go for my second infusion, but it only happened the one time. 

MAbound
Posts: 1106
Joined: Jun 2016

I hope that we are not all confusing or scaring you with our different experiences. It illustrates how unique we all are because we each bring different strengths and weaknesses to the table when we are diagnosed and treated, so it's hard to predict who's going to have which of all the possible side effects. Eldri got hit harder than most because she was sensitive to medications before treatment and things like being diabetic or having other health issues can have an impact on which side effects you might be more vulnerable to.

If you are in reasonably good health and not elderly, the most universal side effects seem to be a lot of fatigue that you should give in to because your body uses a lot of energy to combat the cancer, hair loss, loss of appetite except when you take steroids just before and after infusions, constipation! (expect to need to drink 2-3 qts of water/day and taking Miralax daily), and changes in what food tastes like to you (part of what impacts your apetite).  

You'll probably get a more complete list from your doctor before you start that will scare you witless, but you need to remember it's just like the drug commercials on TV...they have to tell you all of the possibles to cover their behinds, but it doesn't mean that they all happen, they just have happened to at least one person, so they are possible and you have to be forewarned.

The advice I'd give before going into chemo is to do any cooking and cleaning you want before you start and then let others take over so you don't angst about what isn't getting done during treatment. You'll be surprised by how it helps your loved ones feel less helpless if you let them take care of you. Ask your doctor ahead of time about preventing constipation during chemo. The neurotoxic effects of chemo impact not only your peripheral nerves causing neuropathy, but also your digestive nerves slowing intestines down. Drinking tons of water helps to flush chemo drugs out of your system and helps to prevent constipation from getting to the point where you can become blocked and need to go to an ER. It's a bigger chore than you'd think to drink enough, but it can't be overemphasized how important it is. Finally, figure out how you are going to ice your hands and feet during infusions. It's a hassle, but worth it.

Those are the biggies you'll need to be ready for, the rest can be dealt with if and when they come up, just be sure to speak up and not try to suffer through anything.

Theskinnyscot's picture
Theskinnyscot
Posts: 31
Joined: Dec 2019

Good luck for a speedy recovery from your surgery

Maxster
Posts: 63
Joined: Apr 2020

Hello Orchid65, I am so sorry to hear of your recurrence.  I don't know what type of uterine cancer you had but I had serous type, stage IIIC diagnosed in September of 2019.  So it was in my lymph nodes when I was diagnosed.  I had a complete hysterectomy followed by chemotherapy and radiation.  In preparing for treatment after my surgery, I began drinking tons of water, usually 64 oz daily which was and is a big change for me.  Based on research from MD Anderson I also began a high fiber diet (30 grams daily). I also continued daily exercise once i was ok'yd to do so. Exercise boosts the immune system.  Fiber is associated with better treatment outcomes (but probiotics are advised against).  Water really clears the system.  I had constipation from chemo but after the first round I worked out a schedule using senacort that prevented it from happening again.  I was occasionally nauseous and used 3 or 4 anti-nausea pills during the 18 weeks of chemo. (I had 6 rounds, three weeks apart).  I did not start icing my feet until the third round but did my hands throughout.  So my hands are fine but I have some neuropathy in my feet. I recommend icing and having someone make sure the ice is replaced periodically.  I had a heated blanket over me.  I would go in a big slump of tired after the steroids wore off, usually three days after chemo.  But I would rebound in a couple of day.  I exercised as much as I could throughout all of this to boost my immune system. I had 25 rounds of pelvic radiation with side effects of loose stools and fatigue.  Diarrhea came a few weeks after my last radiation and ended in a few days.  So while the side effects are lousy, they are manageable.  I really encourage you to exercise as much as possible now and later.  It helps the mood state and is good for you. I am 71 years old and I am not any kind of athlete. I did the eliptical, weights and even classes.  Now of course its not safe at a gym but there are lots of classes on TV!  You have heard many encouraging remarks on this board and I hope you take them to heart.  I know it helps me everytime I check in to see the wise words posted here.  Again best wishes for a speedy recovery.

 

dgrdalton's picture
dgrdalton
Posts: 151
Joined: Jun 2017

So sorry about your recurrence and so soon. My recurrence was 18 months after frontline treatment, 3 chemo (Carbo/Taxol) and 6 brachytherapy. It recurred in multiple lymph nodes and I had 6 more chemo. The chemo day was not bad and usually the next day. Then I had joint pain for about 3 days and stayed on top of nausea by taking the Ondansetron at the first sign of queasiness. My taste was off and constipation was an issue. We live 200 miles from the infusion center and I was afraid to take even stool softners until I got back home. The good part about chemo is that by the 7th day I was feeling so much better and the week before the next chemo, I felt good again. The fatigue was not too bad with the chemo. The brachytherapy really caused the worst fatigue.

Wishing you few side effects and pray you will be NED after the treatment.

Mercorby
Posts: 32
Joined: Jan 2017

Orchid65,

Having been in the same situation, I can tell you, while it wasn't a thing on my bucket list, it was doable.  Attitude is a big part.  Here are some things I did to keep my spirits up: I dressed nicely (and comfortably) for every infusion. That included make up and earrings.  My doctor recommened getting a fun wig, so I went to Hollywood Blvd and bought an ombre teal wig. Yes, I wore it out to dinner and sometimes to infusions.  Also, pretty hats and scarves made me feel good too.  I always had something I like to do set up after infusions.  For me, it mostly meeting my friends for swimming and then lunch.  Friends and family were very important, but I went to the cancer counselling center for therapy and meditation classes.  I also took Tai Chi classes.

Side effects: First, the sense of taste changes, so someone adviced me not to try to maintain my usual favorites in my diet, but to go for the things that work at this time.  For me, Thai fried rice seemed to work for me as well as other mild foods.

Nausea and occasional dizziness- generic compazine or benedryl worked, I took Collace preventatively when I took the compazine and that prevented constipation - I started with ginger everything, but it really set off my GERD.

Diarrhea during radiation: Imodium worked

Drink a lot of water.

Shot for the white blood cells - Neulasta or some other one - I requested to not take it again after the first time because it really gave me restless legs.  That seemed to be fine.

Paxitaxil - I had an anaphylactic reaction, so we switched to Abraxene.  My dr. told me it was the Chemofor, an additive added to taxol.  I researched and found out that it had salicylic somethingorother that I am very allergic to.  My allergists documented that I had that allergy, so insurance agreed to the Abraxene.

Your hair will grow back.  Having gone through this, you do change.  I feel like I appreciate things and relationships more.

Yes, there are some days that you just want to sleep or can't concentrate much.  Listening to music using a comfy headset is good for those days.  If you need to rest, rest.  If there is something you want to do, do what you can.  A short walk is better than no walk.

Neuropathy - I learned about L-Glutamine after chemo, but I used it and acupuncture and acupressure and now I barely have any.  The acupressure pads and balls are inexpensive and they worked very well.

Complementary Medicine - I went to a dr that treated many of my onc's patients.  Probably a good idea to see one that specializes in cancer. I felt confident in this dr. Magnesium, melatonin, vitamin D, some Chinese herbs, and mushroom supplements are part of my regimen.

Afterwards, I was put on an aromatase inhibitor.  Had another recurrence that was sort of rare, got treated with brachytherapy.  Now on Ibrance and the aromatase inhibitor.  It's been 2 and a half years since the last recurrence.  I am in remission now, but the dr calls it well-managed cancer because mine will recur again and be treated.  Had a genomic test from Foundation One of the last tumor.  It was helpful to know more about the cancer.

Hope this helps and that your treatment isn't as bad as you thought it would be.

Kind regards,

Corby

 

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