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New here, but am learning a lot

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Hello, I'm new here and am so glad I came across this forum. I've been to the ACS website quite a bit these past  few months trying to learn what I can about my type of cancer and have learned a lot, but for some reason never noticed the forums. This is a new thing for me, so will be learning along the way, please excuse any "newbie errors" I might happen to make. I am mid-way through my cancer treatments. I had some neuropathy from my chemo treatments, but no one had mentioned anything to me about “icing” helping with that, so I will definitely have to check out prior discussions on that subject so that I can hopefully  prevent some of that when I start chemo again in June. I am excited to learn from those of you who have experienced many of the same things as I have.

One thing that surprised me about “cancer treatments” is how long how a process it is turning out to be. I was diagnosed with  “Endometrioid carcinoma with squamous differentiation, Stage IIIB”,  back in October of 2020. I had two pelvic exams, one with a gynecologist and another one with the gyn oncologist. Because the gynecologist missed a “nodule” in my vagina that the gyn onc found, they had to do further “staging” before surgery. So I had a CT scan, then an MRI as she was concerned that the cancer had metastasized. Because of COVID, the surgery was delayed a few weeks as she said that although she was going to start out laparoscopically would probably convert to an “open, up & down incision”, so finally had a radical hysterectomy on December 16th.  

Although they didn’t find any cancerous cells in the sentinel lymph nodes, they did find some in the pelvic washings, so my gyn onc recommended I have “sandwich therapy”. For me, that consists of cycles of chemo, followed by 25 treatments of external beam radiation, then 3 internal/brachytherapy treatments and then the final three cycles of chemo. I started chemo (Carbo/Taxol) on February 4th. A week ago today I finished with the brachytherapy and will start chemo again on June 17th.

I have been fortunate in that the side effects haven’t been all that debilitating. At least compared to a lot of what I’ve read about what other women have experienced. Yes, I’ve had bone pain for a few days after the chemo infusions, some neuropathy, fatigue, constipation, hair loss, etc. from the chemo. Also had diarrhea for 4 weeks from the radiation, but I didn’t have a lot of pain and never had much of a loss of appetite, never lost much weight, so consider myself fortunate in that regard. I experienced many of the typical side effects, but I guess I was expecting it to be so much worse, so thought “I can do this.” Could always be worse, I figure. I just hope it works!

cmb's picture
cmb
Posts: 669
Joined: Jan 2018

I didn't find this site until I had just finished treatment, so I also missed benefiting from the experience of others on this board. But we're glad you've made your way here now, even though we're sorry for the reason.

If you haven't already read this, many women here who experienced bone pain after benefited from taking Claritin. I had bone pain when I had my first phase of chemo, but didn't know about Claritin then. I took prescription level Aleve that my oncologist approved, which made the pain tolerable, but I've wondered since if the Claritin might have worked better.

I also didn't know about icing and did develop some mild neuropathy after my last chemo infusion. If you check the FAQ topic at the top of the board's topic list you'll find a link to a discussion on icing. It's also been discussed in a number of other posts, so try searching for "icing" as a keyword.

Even though my treatment didn't coincide with anything like Covid, it also took a long time. I was initially tested in October, 2016, with additional testing in November.  Surgery was in December. Chemo lasted from January 2017 through mid-June (I had eight total cycles). Then I had external radiation from August into September, 2017. So it was almost a year from my initial diagnosis until I was finished.

Do come back with any questions you might have or to share your experiences.

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Thanks so much for the welcome cmb and also for the advice. :-)

I was told to take Claritin starting the day before the chemo infusions. At the time I thought it was quite odd to take a "hay fever" medication for side effects of chemo, but saw it mentioned more than once on various sites, so guessed it must work. Still had stabbing pains though. Felt like someone was jamming an ice pick in my joints -- primarily my knees, but also occasionally it would be a wrist, elbow or hip. Fortunately, that only lasted a couple of days. 

Thanks also for the advice on how to find "icing" by checking the "topics" list. I wasn't sure how to do that. I'm definately going to check into trying that the next time around. Worth a shot, right?

As far as the timing goes for treatment, glad to know your treatment timetable was about the same. Sure isn't like they show on TV where a doctor is telling someone they have cancer and scheduling surgery for the next day. ;-) 

Fridays Child
Posts: 207
Joined: Jul 2019

Rita,  The Claritin didn't help me so I asked if I could take Benadryl instead and it worked much better.  Best of luck to you with your remaining treatment!

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Good to know about the Benadryl...thanks for the tip, Fridays Child! Smile

woodstock99's picture
woodstock99
Posts: 65
Joined: May 2021

New here as well and recently disagnosed so don't have any advice or suggestions but sending good thoughts your way. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2887
Joined: Mar 2013

Rita, different diagnosis (DX) but same "sandwich" regimen.  You see how we say it is "doable" - no picnic but you can make it through.  Like cmb, I didn't find this site until after I had finished all my treatment, so I am so happy to hear when others find it earlier - you can see that you are not alone.  

 

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Yes, I sure wish I had come across these discussion boards last fall. It would have been such a huge help in regards to anxiety about what was to come. All I was finding online was all the "worst case" scenarios and it was pretty scary reading about all the possible side effects, long term damage from chemo and radiation, survival rates, etc. Even though the "expert advice" would say, "not everyone experiences these side effects", you just think, "Of course, they are going to say that." But actually knowing what other women have gone through is so helpful. 

I have a few good friends that have been very supportive and that has been immensely helpful, but they haven't had cancer themselves and I don't want to have every conversation be focused around cancer and end up having them evade my calls because I am sounding like some kind of "Debbie Downer", so I find myself trying to "edit" my conversations in that regard. I usually make light of side effects and say I am doing fine. I don't want to be moaning to them all the time about side effects, fatigue, etc but it would be nice to be around others who know exactly what I am going through and won't have to feel such a need to be "upbeat".

I had mentioned something about the 5 year survival rate for stage IIIB endometrial cancer to one of my friend's and she said something to the effect, "Oh, don't talk like that, you have to be positive!" Well, those cancer cells that could be "setting up shop" somewhere in my body aren't going to hear me talking about facts and decide to grow just because I mentioned the statistical odds of my surviving to 2026. I am normally a fairly positive person, but I am also pragmatic and I can't live the next five years just "hoping for the best" every minute of my life. Some people just aren’t comfortable hearing about those kinds of things, I guess. But at least she cares, and truly wants to know how I am feeling.

I have siblings that have never even bothered to pick up a phone and talk to me about my cancer diagnosis. A few brief texts saying, “Sorry to hear that,” is pretty much it. I have a twin brother who’s never even asked me how things are going with me since I started chemo. My 86 year old mother (who has dementia) lives with me and I am her caretaker. You would think he’d want to know how I am doing if only to make sure his own mother is being adequately cared for. It isn’t like we don’t get along, he is just too wrapped up in his own life to worry about mine, I guess. He must figure if I need help, I’ll ask someone, but he sure is assuming a lot. This is about the time where I’d be apologizing to my friend’s for burdening them, but I’m not going to do that today. Thanks for letting me vent.  Wink

Dak82's picture
Dak82
Posts: 46
Joined: Dec 2020

I live in Utah while my sisters and brother and mom live in the Southeast. My mom came for a week at chemo #2 and my sister--who is a quadriplegic flew in for #3 with her husband. I use that sister as my sounding board for the family. She has helped pass along updates to my siblings when it's too hard for me to do it emotionally. The toughest day I've ever had was the day I had to make 9 phone calls to everyone with the cancer diagnosis--I was 3C1grade 1 before surgery and 3c2, grade 3 afterward. I started chemo 15 days after my radical hysterectomy. All doctors were positive they got all the cancer--which turned out to be in regional lymph nodes. My family finds it hard to make emotional phone calls and two of my sisters hesitated because they didn't think they could hold it together. My brother was an emotional wreck on the phone and they know it's hard for me. But they created bald avatars for texting and we have a lot of fun with that. 

Maybe your family doesn't feel they can handle your diagnosis. Not everyone can deal with it. I have wonderful friends where I live from half a lifetime in the USAF, including my boss, which has certainly eased our minds. I feel for you in your situation but you have many unseen friends on this site and feel free to vent whenever you need to!

Deb

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Thanks for sharing and for offering some possible reasons for my siblings lack of communication. It is probably best for me to just give them the benefit of the doubt. Accepting that they might not be able handle my “cancer issues” is certainly easier for me to swallow than thinking I am not important enough in their lives to bother wasting any time on…which is how I've been looking at their silence. I tell myself that at least I'm fortunate that I have other people who offer the emotional support that, for whatever reason, they are either unable or unwilling to give me. At any rate, I appreciate the insight. Smile

Forherself's picture
Forherself
Posts: 528
Joined: Jan 2019

I had a similar experience to you when I was first diagnosed.  Friends would ask me all kinds of questions and I couldn't answer the questions.  I felt like I was taking care of them and worrying about THEIR emotions, when I wanted to feel my own.  And to top it all off, my husband would not talk to me about my cancer, and he is an MD.  I know he cares, but sometimes it is just too difficult to talk.  I can't give any opinion about your siblings, but I can say that it is hard to talk about and lots of people just don't know what to say.  The pep talks are not appropriate every day.  I was told my someone who had seen a cousellor, to say "I'm not having a good day".   It isn't so scary, but lets people know you can talk.   I found my friends and family extremely difficult to deal with.  I was scared, and it was hard to relate to others at that time.  I'm just telling you this to let you know you are not alone in this.

MoeKay
Posts: 328
Joined: Feb 2004

Rita, human behavior is often unpredictable even when it involves those we are closest to.  I remember being surprised by some reactions I got from certain family members and friends after my cancer diagnosis.  Some people that you expected to be supportive, or at least communicative, were not, others that you did not expect to step up to the plate did, and others reacted just as you would have expected. 

What I find the most interesting now that I'm 22 years post-diagnosis is how those who were least communicative, helpful or supportive at the time of my diagnosis seem to be the ones who are most in need and appreciative of communication and support now that they've been diagnosed with cancer.  And the odds are pretty good that many of them eventually will receive a cancer diagnosis.  The American Cancer Society's latest statistics report that in the U.S., an estimated 41 out of 100 men and 39 out of 100 women will develop cancer during their lifetime.

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Thanks everyone for your insights in regards to others' reactions. It makes me feel better knowing that it isn't just those I know that do these kinds of things. It was something I never anticipated and it was quite lowering to think that I mattered so little to these particular family members. It wouldn't have been so bad I guess if I didn't have people who I would not consider all that good of friends who regularily "check in" to see how I am doing to compare them to. At least now I know it isn't just me, so I can move on from being disspointed in them and just accept that it is what it is. So thanks for that.

This comment of yours I found to be so true:

"Some people that you expected to be supportive, or at least communicative, were not, others that you did not expect to step up to the plate did, and others reacted just as you would have expected."

 

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

I think we have all had that experience - amazing how sometimes "acquaintances" step up and treat us the best.

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

I guess the reality is just that some people are just more comfortable about "the c word" than others. And maybe also, they are just kind & considerate people who take the time to think about others. I think it says a lot about them. I am just grateful I have some of them in my life. It doesn't have to be family members just so long as you have someone who cares, right? :-) 

I also want to say again that I wish I had discovered this board months ago. I have been reading old posts on various subjects and have found the sharing of your experiences so very helpful...would have been more helpful if I had read them sooner though! But that's on me. ;-) I was reading a lot of articles on the internet, but hadn't come across personal stories with helpful advice like what is on this discussion board. I had found all the typical articles listing side effects, treatments, etc, but found most were just retelling of the same info. Hearing all of your stories is not only reassuring that it isn't "just me", but it also gives me hope. So thank you all of you for taking the time to share your stories and experiences. I imagine even women who don't post, learn a lot if they come upon this board. 

alicia2020
Posts: 145
Joined: Sep 2020

I'm glad you found us! This board has been a lifesaver for me, and after about 10 months here, I consider these women dear friends! 
Reading threads here provides so much information that is absolutely not available via articles on the internet! And also reading the "About Me," pages can offer more hope!

I will be thinking of you going back into chemo soon. I wish you great luck with it! It seems like you've weathered the storm well so far! Let us know how you're doing.

😎, Alicia

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

 

Thank you for the warm welcome, Alicia and the good wishes for when I start chemo again. :-) My first infusion is next Thursday. I asked the onc nurse about icing today during my phone visit with her. She said that she wasn't sure if I'd have access to the place where they keep the ice machine due to Covid regulations, but felt sure that a nurse could bring ice if I wanted it. So I am going to read more of the info about icing here on the discussion board and at least see about putting my hands and feet on bags of ice to help ward off that darn neuropathy. I had some of that with the first three go-rounds. I still have some weird sensitivity in my right thumb and three of my fingers on my right hand, but the burning pain in my feet went away at least. However, it would be nice not to have any more of that...or at least nothing permanent. 

 

It doesn't much bother me that I'll lose my hair just when it is finally starting to grow again (it is about 1/3" long now), as my hair was already quite thin and fine before it fell out. However, my eyelashes and eyebrows are just starting to look fairly normal again, and I'll be sad to lose them again, but that is temporary and no pain involved with that. And that is nothing at all like the worry I have that I could end up with permanent peripheral neuropathy from the chemo. So I am going to try my best to tolerate the discomfort of cold hands and feet. I figure it is worth a try and can’t hurt.

 

alicia2020
Posts: 145
Joined: Sep 2020

 

 

alicia2020
Posts: 145
Joined: Sep 2020

I know you've read about the icing here and it really is a good idea. I haven't ever mentioned in my posts or even to anyone at the doctor's office, but even though I did ice my hands & feet, I still have a tiny bit of neuropathy in both my feet (a little tingling/numbness). It's weird...it's not noticeable at all when I have shoes on! I only notice it when I remove my shoes and then go to bed. I didn't tell doctor because it wasn't bad and I did not want them to alter my treatment plan in any way! Hum...numbness in feet or cancer?? I'll take the numbness, please! I will say that I might not have been as completely religious about my feet...changing to new, cold booties often enough....because I was focusing on my hands and hair.

I think my treatment room may have had capability of ice or some freezer space, but I did want to rely on that! So, I froze my mittens & booties over night and then put them in a little cooler to take with me. I bought four of those small, blue, plastic freezer things (I don't know what they're called!) at Walmart. They're in the camping supply area. I had a collapsible dolly from years ago & I strapped my little ice chest on it and rolled it in! No carrying! I also bought a 12" X 24" heating pad..a very cheerful hot pink!...and it really, really helped keep the rest of me warm! 

I was in my doctor's office/treatment room this morning to get my port flushed and my faithful, fabulous chemo nurse, who helped me tremendously with my caps, mittens, & booties, couldn't wait to see my hair! It's quite a mess, so a million different lengths, but I can wear it up and look like I have a normal head of hair. And then I wear great hats! A patient asked about the cold-capping, "How was that for you?" I said, "Torturous!" "Would you do it again?" she asked. I said, "Yes, but I would be very, very unhappy about it!!" 

You have a great attitude about your hair and everything else you are enduring. Keep it up! This will be over and you'll feel like your old self, and you can feel good that you did what you needed to do and conquered your cancer!

Hugs & prayers,

Alicia

 

dgrdalton's picture
dgrdalton
Posts: 152
Joined: Jun 2017

Welcome to the group, Rita. So sorry that you need to be here, but you will not find a greater group of ladies! I found this group after my hysterectomy for Stage 1A Grade 3 serous carcinoma. My gyn/oncologist couldn't decide if I needed chemo or observation. I was convinced after finding this group that I needed a 2nd opinion. That's the best thing I did for myself after diagnosis. I'm convinced that I have the best gynocologic oncologist and chemo nurses. It's a good feeling to love and trust your team! 

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

That's a good idea about the little dolly for bringing in the ice chest. I'll have to look into that. Heating pad a good idea too. I already have those. What you mention about the werid feeling in your feet at night is what I feel if I don't wear socks to bed. But I had a little bit of that before the chemo. Possible already had some neuropathy from the diabetes. All I know is I can't stand to have my feet bare at night, but I can wear sandals, no problem there. Weird, I know. 

I have a question for you about the booties and mittens. Did you just use regular mittens and soak them in water and freeze them or were they some special kind? If so, where do I find them? The thread I was reading last night mentioned one brand, but I believe they are no longer making them.

I have a wig...wearing it my avatar, but it is hot...and sometimes itchy, so I prefer wearing hats, caps most of the time...cooler and more comfortable.

 

 

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Thanks dgrdalton, for the welcome. I read your story after clicking on your name. Sounds like you had quite the scary ride back when your cancer was diagnosed. Sure am glad the chemo worked and you are here today. :-)

alicia2020
Posts: 145
Joined: Sep 2020

I wish I could remember where I got that little dolly...but I think it must have been Office Depot, or a place like it. You know..like business people might want for carrying files, etc. Very handy!

The booties and mittens I got on Amazon. There are multiple sellers and brands, but they're all pretty similar. Just search for "booties for chemotherapy" and all that stuff should pop up!They are fabric and then have gel inserts that you freeze. You can buy just extra gel packs, instead of multiple pairs, and then you can switch them out during your infusion. From a lot of stuff I read it didn't seem like you had to have hands and feet so cold that it was painful, just good and cold. I do think it's important to get them nice and cold BEFORE they start the chemo drugs....about a half hour accomplishes that!

Yeah...the tingling feet is weird for me, but not painful. And it doesn't interfere with my sleep! 
I'm happy to answer any questions! 

We're all here for you!

😎, Alicia

alicia2020
Posts: 145
Joined: Sep 2020

I'm a "head sweater" AND I live in Houston, so no wigs for me! And the hat thing seems to be a great thing!

😃

RainbowRita's picture
RainbowRita
Posts: 29
Joined: May 2021

Thanks so much, Alicia for the info on where to get those things for icing. I went to Amazon with the search words you suggested and found the mittens and booties. I will be ordering some right now. Hopefully they will arrive in time for my next infusion on Thursday. Sure am glad I found you guys...you are the best! :-)

alicia2020
Posts: 145
Joined: Sep 2020

you found them!! Hope they arrive in time! Amazon's pretty good about that!

I will be sending good wishes your way!

😎, A

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