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Chemotherapy

Orchid65
Posts: 33
Joined: Feb 2020

I just had a post operative appointment with my surgeon.  He successfully removed the cancerous left para-aortic lymph node (on June 29, 2020) that had been a recurrence from the Stage IB, FIGO 2 endometrioid endometrial adenocarcenoma (Total hysterectomy in Jan 2020).  He now recommends chemotherapy and possibly targeted radiation to the left para-aortic lymph node area.  The chemotherapy treatment he recommends is 6 cycles, one every three weeks, which would take about 4 months.  Each session would be about 3 hours.  Does anyone know if this would be considered a low dose of chemotherapy?  Is there a standard treatment?  Do some people have chemotherapy every week or every two weeks?  I just wanted to know about the dosage of chemotherapy and how toxic it would be.

About the ice baths to prevent neuropathy, do I need to keep my hands and feet in the ice baths for the entire 3 hours or can I take them out for a while?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Orchid65, The standard chemo treatment is 6 treatments 3 weeks apart. Most get Carboplatin/Taxol. My infusions lasted more than 3 hours but that also includes the premeds they give you to help with side effects.  I did not do ice baths so can't tell you from personal experience what I did. Many ladies here have posted that they kept their hands and feet in ice water for the entire time. I'm sure someone will be along to provide more input.

If you have the time, there is an older thread that may be helpful: 'Ladies Going Through Chemo'. Lots of documentation and actual experiences shared by many of us.

Chemo is not easy, but it is doable. The 4 months goes by fairly quickly and you will get into a routine. The first one is the most scary because you don't know how your body will react.

Good luck and please come back with any questions. Someone will be able to answer you.

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Cindi, thanks for the reminder of that thread!  cmb has that one posted at the top of the board under FAQ.  I pulled up and put it here for ease:

https://csn.cancer.org/node/296461

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the link to the thread.  I am getting a better idea of what it is like to go through chemo.  What is a port and who may need it?  If I am supposed to go back to work, is there a better day of the week to have the chemo treatment?  Should I start shopping for a wig now?

MAbound
Posts: 1087
Joined: Jun 2016

It almost looks like a dime-sized computer mouse that they put under your sking near your shoulder. They inject iv fluids into the soft body and the "tail" carries the fluids into larger blood vessels than what are in your arms. Chemo drugs are somewhat caustic, so delivering them into larger areas helps to keep your veins from being excoriated during chemo and also saves you from someone needing to repeatedly fish for a vein. They usually sterilize the site and numb it before each infusion and, after chemo is done, flush it every couple of weeks until it is removed. 

Getting a port placed is an outpatient procedure and they usually sedate you for it, but not put you under completely. You don't feel anything more than pressure, but it is kind of weird and possibly a bit overwhelming to have 3 people or so working on you at the same time doing the placement and monitoring you. I was a bit jumpy during it, but that's because I didn't know what to expect. It was pretty easy, but one is so anxious about everything when recovering from surgery and facing chemo. Just tell them to be generous with the sedatives if you are anxious.

You'll probably be sore for about a week after placement, but once it heals it shouldn't inhibit you from doing anything, including sleeping on that shoulder. Some people have issues with bleeding, infection, or bruisng depending on what meds they they are taking or other health issues, but most of us are pretty happy to have the port and tend to keep them for a year or two after chemo for just in case. Some can't wait to get them out because it feels like they are just waiting for a recurrence. It's an individual choice.

I think everyone should get one because it really helps to get through chemo infusions and if you'reone of the ones who has big troubles with the port, it's not a big deal to get it out; they do it outpatient using a local.

If you are working through chemo, Thursdays or Wednesdays are good infusion days so you can have the weekends to baby yourself when the worst fatigue its. 

Being bald makes wig shopping easier, but I'd do it earlier because you'll be immunosuppressed between infusions and dealing with times of really surprising fatigue. You'll probably be less self conscious shopping while you have your own hair, too. BTW, a lot of people shave their heads when they get tired of shedding, but Id consider just cropping it to about an inch long. I put ice in a gallon ziploc bag on my head during infusions and as a result always had some "peach fuzz" covering my scalp instead of a cue ball. That little bit helped my scalp not feel so sensitive when sleeping on a pillow or wearing a hat or wig. I didn't get the razor rash some people get, either. Just a suggestion.

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the information on the port.  How far in advance do you need to put the port in before having chemo infusions?  It is ok to keep it in you for several months?

So fatigue hits a couple days after the infusion?  How about the nausea and constipation?

Thanks for the tips on the hair loss.

MAbound
Posts: 1087
Joined: Jun 2016

I wound up at the same hospital on the same morning to get my port put in as the wife of an usher at my church. I started my chemo a week later and she went straight to an infusion room after her port was put in. It all depends on others schedules I guess, but they don't necessarily wait for your incision to heal before they start using the port.

Nausea isn't a given and they usually give you medication ahead of time to have on hand if you need it. I never used mine and never had nausea, but others have needed to take it preventively. 

Chemo slows intestinal peristalsis way down, so constipation is a big deal during chemo. You really have to keep pushing yourself to drink way more than you probably are used to doing and it helps if your oncologist advises a regimen to prevent impaction or blockage. My doctor advised a low fiber diet (eating fiber doesn't work like it normally would and can actually cause a blockage) and taking Miralax twice daily. Some doctors have different preferences or practices, but you really need to take preventive measures for this during chemo because you can end up in an ER with the kind of constipation chemo can cause if you don't. It's as important as icing to prevent neuropathy in my book.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

I remember being with a bunch of other patients at the hospital and one of them said, "Miralax is a miracle".  LOL!  I had taking Miralax down to a science.  I think I did it the day before, the day of, and a day or two after.  It was more than the what was said on the label, and I had called the nurses to ask them if it was ok.  (should have bought stock! Wink)  As "MA" said about being ahead of the constipation, I figured after major abdominal surgery the LAST thing I wanted was constipation!  

I luckily never had horrible nausea, but I had the drugs and used them rarely.  Trader Joe's also had a ginger cookie with little pieces of ginger and nibbled on those as well.  

I found this site AFTER treatment was done, so you have the advice of people who know on icing to prevent neuropathy!  I had no idea and just got lucky.

Don't be afraid, you will see chemo is "doable" and we are here for you. 

zsazsa1
Posts: 507
Joined: Oct 2018

Orchid, I'm an extremely controlling MD.  It was very, very hard for me to go through chemo, knowing all the toxicities.  But you have to understand that the chemo regimens have been chosen by decades of controlled studies, comparing one regimen to the next, and you cannot redo all that research in a couple of weeks for yourself.  You have to give up control here, and trust that the recommended regimen is recommended for a reason.

Take the offered carboplatin/taxol regimen.  Ice your hands and feet during the taxol, as I've described.  I have very little neuropathy - no stabbing pains, only slight numbness in the ball of my left foot, because of falling asleep with the ball resting on the bottom of the ice water box.  Have ondansetron ready at home in case you have nausea.

As for radiation, I would start inquiring NOW, ahead of time, about proton beam radiation.  From what I understand, it is more specifically directed at the particular area.  It IS available in your area (Seattle?) but you're probably going to have an insurance battle on your hands, so that's why I say start looking into it immediately.

You can and will get through this, and hopefully, with the chemo and appropriate radiation, it won't come back, and you can get on with your life.

Orchid65
Posts: 33
Joined: Feb 2020

Thanks for the tips.  I will look into proton beam radiation.  I am actually in Salinas, about an hour from San Jose.

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

The initial shock and uncomfortable feeling goes away in a few minutes. You will still feel the cold but it is not bad. Better than a lifetime of horrible neuropathy. I slept through most of my infusions, so the icing was not bad enough to keep me awake. I assume there is a standard dose initially. Due to side effects they reduced my dose by 20% for the last treatments. Everone’s response to the toxicity is different, some work during chemo, some, (like me) could not get off the couch, and some of the side effects are cumulative, some  not. I received a great deal of one on one patient education plus enough booklets to staff a library. Perhaps your oncologist has the resources to do the same. I think that for most of us the reality of going through chemo was not as bad as what our fear of chemo conjured up. It is not pleasant but very doable. Good luck to you. 

Denise

Orchid65
Posts: 33
Joined: Feb 2020

Did your chemo team adjust the dosage of drug depending upon what your response was?  So I need to tell the Chemo team how things are going, side effects, etc?

MAbound
Posts: 1087
Joined: Jun 2016

Do not try to "just deal" with anything as you are going through chemo. This includes during infusions and when you are at home. The chemo nurses and your oncologist have many tricks in their bag to get you through everything safely while minimizing the side effects you end up having, but you have to keep them in the loop and never feel like you'd be "bothering" them, even after office hours. If you are ever reluctant to call, you can also check-in with us and we'll tell you otherwise. ;-). Odds are you'll be fine, but it can be hard to believe that until you get the first infusion behind you.

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

side effects. Neuropathy, nausea, lots of bone pain, after one infusion. I iced, drank about a gallon of water a day in the first days, also I had a terrible metallic taste in my mouth that made everything taste bad. I did take the anti-nausea meds before chemo, and after. I only vomited once, but never did after they reduced the dose. I had constipation followed by diarrhea. Also the docs and nurse made sure I was aware that they were just a phone call away and to call them if I had questions or was in distress. I also was advised to write down my symptoms as they occurred, because it is hard to recall three weeks later at the next oncologists appt. So I knew that day three I would get bone pain, lasting 3 days, Nausea started on this day, ended on another. Neuropathy was in fingers, toes, erc. Helped to see the ebb and flow of symptoms and then you knew what to expect, when at your next infusion. Truthfully for me the fatigue was difficult but also the boredom was about as bad. Only so many hours a day one can read, talk on the phone or watch tv. I usually only went out the third week. Everyone is so different so take heart that you may only have some of these side effects, and they won’t be bad. We are here for you. 

 

Denise

zsazsa1
Posts: 507
Joined: Oct 2018

I had a nurse visit to the infusion center before the first infusion.  It was very helpful.  I was still frightened, but it helped to have had that visit beforehand with a nurse explaining to me exactly what would happen, and to see where it would happen.

 

Orchid65
Posts: 33
Joined: Feb 2020

Sounds like this might be a good idea.  Thanks.

yetti's picture
yetti
Posts: 19
Joined: May 2019

You will not regret getting a port. I personally would not had been able to do chemo without A port!  I'm a person considered a hard stick, which means being stuck several times in order for them to find a vein to Access to get blood!  I could not imagine several sticks to get chemo started, just the  thought of chemo my anxiety was through the roof! I have also been able to have them use the port for all blood draws and ct scan iv. And pet scan iv and even iv for colonoscopy! Just tell them in  advance  and they will have the port access kit available and trained med professional to access port for the iv.  I have been Ned sine March 29 2019   Today Now July 27 2020. I have my port still. I need. It for blood draws and for IV s !  Im not keeping it for the reason for more chemo if there is a recurrence.  Bc I will not do chemo ever again!

zsazsa1
Posts: 507
Joined: Oct 2018

Another vote for a port.  I had one put in before chemo, and it's a HUGE help.  I don't have blood drawn from it unless they're doing an infusion, too.  If all I need is a blood draw, I have it done peripherally, because I don't want the port to get infected and need to be removed.  I watch the nurses like a hawk when they're accessing the port, to make sure that sterile procedure is observed stringently.  I developed a clot at placement, but later on we realized that it was because of the non-yet-diagnosed lymphoma I had at the same time.  Most people don't develop clots from placement.  Once the clot was reabsorbed, the port's been no trouble at all.  I forget it's there in between infusions.  The nurses tell me that people come in with ports that haven't been touched for two years, and they STILL manage to get them open and working again.  Unbelievable.

Mercorby
Posts: 31
Joined: Jan 2017

I agree with the pro port people.  The port was a game changer during chemo. Just put the lidocaine on two hours before and I don't feel a thing.

It's been 3 years since chemo (for my first recurrence) and I still have my port.  I was going to get it removed and had the referral to do so, when I had a 2nd recurrance 6 months after chemo.  Now, no one is suggesting that I get it removed.  I've been taking Ibrance and an aromatase inhibitor for maintenance for 2 and a half years and doing very well.  I have to go in every month for a port flush and blood draw (for the Ibrance).  The nurses have all been fine in how they handle it.  It doesn't really bother me.  I have even worn some tops that exposed it and didn't mind. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

As someone who did not get a port, it was not offered, I also figured "it is only six".  Well the education of chemotherapy, after the first treatment, and I also have small veins, I said to the nurse, "that wasn't so bad, we'll have to remember that site for nex time."  That is when she told me "no, that chemo makes your veins hard."  I was sad to hear that and #2 went well three weeks later.  Then I got to treatment 3 and they had to call the IV team.  Boy, that was a tough day.  Since I had radiation 'sandwiched' between the chemo it actually gave my veins a break and I was able to do 4 - 6 ok.  I am still ok with my decision, it was the right one for me, but as you see, a LOT of women have them and I am probably the exception here.  This is just to give you another perspective.

If this all seems so overwhelming, it is understandable.  Take a breath.  We are all here for you.

LisaPizza's picture
LisaPizza
Posts: 324
Joined: Feb 2018

Same here, was told I didn't need one, and did alright. Only one missed stick in six infusions. However, the carboplatin infiltrated in the last 5 or 10 minutes on infusion 3, and my arm was red for weeks (not severe, but pretty significant) and I  thought the bump would never go away (finally did months later). I have noticed that IV and blood sticks ever since chemo have been harder. I was always an easy stick before chemo, and apparently not so much anymore. Would definitely go for a port if I needed any chemo again, but wouldnt go so far as saying I have regrets about not having one rhe first time.

ChessieMae's picture
ChessieMae
Posts: 6
Joined: Feb 2020

Thought same,  it's only 6.  I did ok.  In hind site I wish I had been more informed.  Veins got harder to find.  After infusion they were sore, ached some and then disappeared  never to come back.  This is ok so for an not sorry for choice. if I should need chemo again I will need to use port as veins just aren't there any more.

For me biggest issue was drinking lots to flush out after chemo and keep GI tract moving! Found that the sooner I cleared all of chemo drugs I could the quicker I recovered. All of it is very doable and keep that " can do" attitude going.  Good luck!

Maxster
Posts: 44
Joined: Apr 2020

I had my first infusion through my vein because I could not get into the surgeon beforehand.  It went fine.  I do not recommend getting the port put in the day after the infusion.  I was pretty miserable for a few days.  I did not like the port and felt its presence always.  At Memorial Sloan Kettering where I had a second opinion, they use the vein if possible.  My son-in-law is a physician researcher there and recommended the vein.  However, my local oncologist really preferred a port so I went with that.  I had no problems getting the chemo through the port but I always felt its presence.  Psychologically it was a constant reminder of my disease and possible recurrence and I could not wait to have it removed which I did a few months after my last infusion.  Both getting it put in and taking it out were simple procedures.  If I should have a recurrence and decide to have infusions again, I will probably insist on the vein.  I think it's all personal preference and what your body can tolerate.  I will also relate to what ChessieMae said about fluids.  I drank and drank water and continue to drink lots more than I did before I was diagnosed.  I made sure to drink at least 64 ounces a day of water.  Now I make sure I get in 48 ounces.  I don't count any other liquids I take in, just the water.  I also worked with my nurse practitioner after my first infusion on dealing with a plan to deal with severe constipation which I suffered.  The plan worked so I suggest you talk about this possibility right away. Good luck!  It's a journey no one wants but as you can see its doable!

 

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

scheduled for 4 chemo. I had hard hand vein nodules that resolved. No issues otherwise. 

Molly110
Posts: 150
Joined: Oct 2019

I didn't want the port -- after a D&C and hysterectomy I just didn't want one more procedure. After three cycles, though, I gave up and got one, and wished I'd had one all along. My veins are very small, and despite their skill, the infusion and blood draw folks had an increasingly hard time finding veins. I ended up with flibitis (sp?). Getting the port was the only negative care experience I had throughout the chemo and radiation, because the sedation didn't take and I was excruciatingly awake for the entire hour. (I think a half hour is a more common time for the procedure.) It didn't hurt at all, though. I'm anxious about medical stuff, and I should have been more assertive (or assertive at all). I'd gotten spoiled by the wonderful care from my gyn/oncologist and his team, and I guess I expected the same warmth and skill from the interventional radiology people.

As others have said, you will get through this. I was so scared I came very close to not doing it, even knowing the risk of death. It was nowhere near as hard as I expected. If you, like me, are mostly familiar with chemo from friends or family treated for breast cancer, your regimen will be *nothing* like that. My doctor told me that, and was he ever right. Everyone experiences chemo differently, so there is no sure thing, but there is a lot of support avaiable to you on this site. I echo what others have said -- tell your care team about every single side effect. They will know how to help you. If you ice, and I really enourage you to, you will need to ice 20-30 minutes before the chemo drugs through the entire time and 20-30 minutes after. Your care team will be familiar with the process and can give you the specifics on the timing. Taxol is so associated with neuropathy that I think the damage from carboplatin doesn't get enough attention, so keep icing through the carboplatin. My chemo sessions lastedvabout 5 hours, as they had to slow down the infusion because I reacted to the taxol.

I know this is terrifying, and it seems like there is so much to take in. I think Zsa Zsa said it perfectly -- this is a time to rely on the expertise of your oncologist and care team. Ask them to explain every single thing, and they will. I really wanted to quit midway through because of the neuropathy, and I found an analysis from a respected clinician in a respected journal that said it would be okay to do that. So I asked my doctor, and he walked me through the problem with that analysis. I so wanted to stop that I just wasn't in a good position to analyze the literature. I was looking for something to tell me it was okay to quit. If you'e not getting your care from an academic medical center where they treat many cancers like yours, you may need to question more, but it sounds like you are not getting your care in a community hospital, so that's good.

I only had constipation after the surgery, but not from the chemo. Perhaps that was because I drank many gallons of water every day, something unusual for me. My care team recommended it, and it made the difference for me. Lots of women drink the water and get it anyway, but your team will tell you specifically what to do. I worked throughout chemo with no difficulty. I did chemo on Friday so that I would have the weekend to deal with the hyped feeling I get from steriods. The steroids are prescribed for the three days after chemo to help with nausea and other side effects. I never felt nauseated for a moment, although I had a prescription ready at hand if I had. 

Fatigue didn't hit me until between the fifth and sixth cycles. I worked from home a couple of days a week during that month, which saved me the energy of putting on the wig and walking to the car. If your job requires you to be on your feet a lot, you may not be able to work all the way through. My onccologist tells me that most of his patients who work were able to work throughout the time, and I assume that that has a lot to do with the kind of work one does.

I'd get the wig ahead of time if you're anxious or sad about hair loss. Your regular stylist may be able to help and advise you. If not, there is a great site for wigs called Patti's Pearls. i've bought many wigs from them, and they will advise you. You can send them a picture of your current hair if you want help with style and color. Wait to buy until they have a 30 percent off sitewide sale, which they do every couple of weeks. I really like Jon Reanu (sp?) wigs; mine looks very much like my own hair on a good day. There is a process for freezing your scalp that works for about half of women. Generally it is thousands of dollars, but through some kind of foundation my cancer center offers it free for all patients. You might want to look into it. I decided against it because the success rate isn't fabulous, and I was so scared that I didn't want to add one more layer of complexity to my treatment. I've second guessed that decision many times since then.

It stinks that you have cancer -- it stinks that we all have or had cancer -- but there is a lot of help and support to be had. Tell your family and friends how they can help you get through the chemo and radiation. You may not know now what you will need, but you will as you experience it. I'm not a person who asks for help, in general, but I found that my family, friends, and colleagues felt much better when there was something concrete they could do for me. People who love you will be scared, too, and you will be doing them a kindness to let them help you. 

Take care.

 

 

 

 

Burni's picture
Burni
Posts: 7
Joined: Aug 2020

I just finished my 1st chemo two weeks ago. Mine is also scheduled for 6 times.Im not sure of the dose mine is R- chop but they say 6 times to make sure they get it all.I had very minimal side effects this first time. Day 1-5 I felt really good as I was on 100 mg prednisone.I got the metallic taste and to me everything tasted super salty. On day 8-10 after chemo my back and ribs/bones started to hurt and this coincided with the lab results of super low white blood cells. After a few days they stopped hurting. I rinse my mouth often through the day, drink 80oz of water, take miralax faithfully and walk around my block daily.I will have spinal chemo in 3 days and my 2nd chemo in 8 days.I have Faith in my doctors and hoped you can too

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Burni, I read your story when I clicked on your name.  Thank you for sharing as I think it is helpful for anyone who comes to CSN.  Please let us know how you are doing as you continue on your journey.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Welcome Burni and thank you for sharing your story. I hope you continue to tolerate the chemo treatments at the level of this first one.  I agree with NoTime that your journey is certainly one that can help all of us. Please continue to stay with us and let us know how you are doing. We will be here for you to offer support and understanding.

Love and Hugs,

Cindi

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