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Reoccurrence after initial diagnosis and hysterectomy

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

My mom (not internet savvy) last year at age 75 was diagnosed with uterine cancer.  It had penetrated the muscle wall but had not spread outside the uterus. The ovaries were cancer free, as were over 30 lymph nodes. She underwent the recommended radiation due to having 3 of 5 risk factors for a reoccurrence.  She finished radiation treatments last year in august. At her follow up this year in July she complained about stomach pains and was told by her radiologist that it was probably adhesion. The next week I took her for am MRI and we were told the cancer was now in the omentum, lymph nodes, and appendix. She had surgery on September 28th and her 1st chemo treatment on October 27th.  We need as much insight into what to expect as we can get. I am blessed to have found this sight!!! she is very week at this point and I am having a hard time finding anything she is willing to eat or drink.  She has had no mouth sores(I had not been told to even watch for them) but the bone pain is bad. She had some nausea but that seems to have subsided. Still no appetite and no desire for fluids. All advice is welcomed and greatly appreciated. May God bless each and every one you.

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

So sad you have to join us in this club that no one wants to be a member of.  This is a great place to come for comfort and advice.  You have a hard job as your mother's caretaker.  She is lucky to have you.  There is a tread here called "Ladies going through chemo" that give a lot of advice and information  written by some while they were going through chemo.  I use Biotene mouth wash and I have never had a mouth sore. Some doctors recommend a homemade solution of baking soda and salt.  I tried that first and didn't like,the taste at all.  Eating and drinkink can be so hard.  Hydration is so important.  Popcycles, watermelon, cantaloupe, soups and smoothies can help.  I also use protein drinks.  I like Breakfast Essentials because it has 15 grams of protein and is gluten free.  If dehydration becomes a real problem your cancer center or ER can give your mom hydration by IV. I have had to,go,that route several times.

Hugs and prayers, Lou Ann

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

Thank you. I just really feel lost at this point and will check the the thread for any insight.  She was doing really well after her surgery to remove the omentum and appendiX. It was such a major surgery and she is very tough. Hardly used any pain meds (hates how they make her feel) and with physical therapy coming here to work with her she was actually getting around better than before her surgery.  Now, she is so weak and we are on day 8 after chemo and it doesn't seem to be getting any better.  thank you again!

Mmpeterson
Posts: 124
Joined: Sep 2016

I am just starting my journey but quite a few of the ladies said to take Claritin for the bone pain.  I will receive carbo/taxol on the 15th so the Neulasta patch will be used.  I bought the Claritin and was told to use it the day before and about 4 days after so when the Neulasta is released the Claritin should help with the bone pain.  I took my anti-nausea meds the night of chemo and 4 days after with great success.  So far (knock on wood) my appetite is very good.  I have a smoothie everyday and Premier Protein shake every morning, it has 30g of protein and the chocolate is actually very good.  I know that some of the ladies also have used Ensure or Boost, maybe your mom can try something like that to help her get the nutrients she needs.  I also drink tons of water, sometimes I add Propel single pack powder to flavor it up a bit.  The ladies here are a wealth of information and an amazing support system.  Hope your mom starts to feeling better!! Sending you prayers and many hugs!  Maryanne

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

She doesn't seem to think the clariton is helping.  She is still taking it every day.  I try to have her drink but am worried today that she is going to get dehydrated.  Has no desire to drink anything.  Has no appetite.  I have tried several different protein shakes but she isn't really up to trying them much after i make them.  I started reading some other peoples posts to her yesterday and this morning hoping to motivate her.  Everyone here is so very supportive and informative so I pray that encourages her.  Staying positive has been a struggle for her from the beginning.  She was 75 when this started and other than having 3 children, she was never really in the hospital a day in her life.  Prayers!!

 

MAbound
Posts: 906
Joined: Jun 2016

Claritin didn't do a thing for the pain I had after the first chemo with Carbo/Taxol, either. Probably because it was CIPN (chemo induced peripheraly neuropathy) as opposed to the bone pain caused by Neulasta. I never was prescribed Neulasta; my WBCs always bounced back just before my next infusion.

Does her pain originate from her toes and fingers and spread from there? That would more likely be neuropathy than bone pain, and pain meds aren't very effective at treating it although there are some anti-seisure and anti-depressant meds that help some with it. It's a lot more painful than just the numbness and tingling they warn about. It's more like your standing in a fiery bed of hot coals with the heat radiating up your extremities and it is unrelenting. I could cope with it during the day, but sleeping with it was impossible. My doctor switched me over to Taxotere, which is in the same class as Taxol, but seems to cause less issues with neuropathy. My blood sugars were also high, especially when I took the steroids, so I was started on Metformin. Vitamin B12 gets converted to its inactive form by cancer and chemo, so I also got monthly B12 shots during chemo, and those things seem to keep the neuropathy from getting worse and by the 4th treatment it also seemed to be getting better except when it would reintensify for awhile along with the other side effects after an infusion. The only thing that helped deal with the pain I had were hypothermia slippers and mittens that I wore during and in between infusions, especially the slippers. I'm so sorry that your mom is struggling with all of this and hope you both find something that works for what you're dealing with. Getting through treatment is rough, but there is light at the end of the tunnel. Hang in there!

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

Oh wow. Thank you for responding.  She is complaining about her her hands and feet alot.  She did get the neulasta.  Her blood sugar is high but that actually started elevating a few days before her treatment.  She takes just one long lasting insulin injection daily. Before her surgery, she wasn't taking very good care of her diabetes, wasn't checking her sugar regularly and just took onglyza every day.  Thank you so much for giving me some insight.  I just hadn't heard anyone saying the bone pain lasted as long as hers so knowing it is more a neuropathy issue helps. 

MAbound
Posts: 906
Joined: Jun 2016

Lou Ann covered most of the bases for things to try to eat and for preventing mouth sores, although I never heard of combining baking soda and salt? No wonder it tasted bad! Just a tsp. of the baking soda in 8 oz. of water and swish (don't swallow) after eating to neutralize any acids from food or saliva is what I was told. It still tastes a bit salty, but not terrible. And watermelon? Can't emphasize enough how great that tasted when I couldn't eat anything else. It even helped with nausea and heartburn! The bone pain seems to be the worst after the first treatment, so have hope that it could get to be less of a problem, but definitely let your mom's chemo nurses or oncologist know what she is dealing with now. They have tricks in their bag that can help with that. Your mom should push herself to drink water though, that's critical as it helps to flush the drugs from her system and protect her bladder from their irritating effects. She'll feel better for doing that. My husband was following me around and pushing water on me all of the time through chemo, God bless him!!

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

I am buying watermelon today. Thank you.  I am willing to try everything.  It's hard to know when to quit "nagging" about the drinking.  I want to be supportive without making her angry.  I do push and remind her about keeping her kidneys flushed (my brother had a kidney transplant over 30 years ago so she knows the dangers), but it for now it doesn't seem to help.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

I'll second the advice that my bone pain was worst after my first chemo and I never had nulasta. I didn't have the Claritin with the first treatment but used it ever after with infusions. Have they given your mom prescriptions for nausea meds. I used them and thus while not very hungry I didn't have nausea.

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

She does have zofran for the nausea although it doesn't seem to really help. 

MAbound
Posts: 906
Joined: Jun 2016

Ask her Doctor if you can try Pepcid AC for her nausea if the Zofran isn't working. I had heartburn in my upper esophagus that made me feel nauseous. I didn't realize it was heartburn at first until I found myself placing an icebag I was using on my warm head on my throat instead. It was kind of an "aha!" moment because the heartburn wasn't coming up from my stomach like it would normally. It was heat at the base of my neck and lower throat mostly. The Pepcid AC worked a lot better than the Zofran, so maybe it would help your mom, too, but run it by her doctor or chemo nurse first. I got IV Pepcid before my chemo infusions, so it kind of made sense why taking it orally helped when that wore off and the side effects kicked in.

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

My bone pain centered mostly on my knees. I have osteoarthritis in them and it was definitely terrible pain and not neuropathy. I did fine later that applying warmth to them helped. I used a heating pad and taking warm baths.

MAbound
Posts: 906
Joined: Jun 2016

It's hard to pin down what that pain could be and at 75 it certainly could be arthritis made worse by the chemo. I found that heat made my neuropathy pain worse and cold helped, so that might help to figure out what's the issue for your mom.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2644
Joined: Mar 2013

LARyan, how lucky your mother is to have such a loving daughter.  I know I couldn't have made it without knowing I had the love and support of family and friends.  

I remember not wanting to eat AT ALL myself.  A very good friend made me a pot roast and because I know she went to all that trouble I really had to force myself to eat it when she brought it over.  There was enough there for a few days so I continued to eat it.  I tell her all the time what that meant to me as she couldn't even begin to know where my head was at.

Maybe she has a good friend who could do something like this and you can encourage how much love and concern that person has for her so she should try eating it?  I completely understand where your mom is at, and once I started eating I knew I really had to keep eating to get better and fight.

Please let your mom she is not alone.  There are lots of us out here and can offer all kinds of suggestions.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Welcome to the group, LARyan. So very sorry to hear how your mother is suffering. If the LA in your name refers to Los Angeles, then maybe her doctor can prescribe medicinal marijuana for her? I understand that that can help some with loss of appetite.

I didn't really experience loss of appetite with chemo. Except for nuts having no flavor at all, everything tasted fine to me. I was advised to use plastic utensils because the metal from regular ones can leave a metallic taste in your mouth. Also, I used the baking soda/salt solution (1 tsp baking soda + 1/2 tsp salt in 16 oz water) after meals to rinse my mouth and never had any mouth sores. 

I hope that your mom starts to feel better soon. If she doesn't start hydrating, you may want to call her oncologist's office. It's so important to get the chemo meds out of her body so that she can start healing before the next cycle. Wishing you both peace and strength, Kim

 

janaes
Posts: 785
Joined: May 2016

Welcome to our group.  Im sad to hear your mom is struggling.  It sounds like you are doing so much for her.  Its hard to be doing chemo.  Im so glad you are there for your mom.  It was hard to always let my family know, but was so glad they were there to help.  I found watermelon to be helpful.  There were times i just did not feel like eating or drinking.  During those times i did manage to drink carnation instant breakfasts every day because i am a thin person and did not want to loose wieght.  I didnt have an appitite most of the time.  i just ate and drank because i needed to.  On some of my worst days i ate  the watermelon.  That  seemed to be easier than water at times.  Best of luck as the two of you go forward with this.  I believe in your mom.

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

Thank you.  I am so appreciative of this group. Everyone here!

Nellasing
Posts: 529
Joined: Oct 2016

So glad you found this wonderful group of ladies!  They have been nothing short of amazing as I watch them reach out to each and every person who comes, whether it is daughters or caregivers or someone finding their way as they've heard these words no one wants to hear or ever really thinks they will hear.

I had terrible pain, especially in areas where I've had previous injury.  There were days when it was unbearable and I broke down and took 1 pain med because I, like your mom, hate the way they make me feel.  I would like to mention that the pain always subsided as the "effects" went away. 

We reach what is called Nadir=  "What is Nadir period? Chemotherapy treatment will usually involve a number of chemotherapy doses (sometimes called cycles). The period of time beginning 7–12 days after you finish each chemotherapy dose—and possibly lasting up to one week—is when you have the fewest white blood cells in your body."  They warned me that anywhere from day 3-5 and possibly longer could be the worst.  Knowing that it came and went seemed to help me each treatment as I knew what to expect to some extent.

I wasn't hungry but when I ate something offered to me I usually found that I could eat.  Same with thrist- I knew I had to drink and I stayed on top of it and I think once you get going your own natural thirst kicks in.  I keep a glass water bottle- filtered water- next to me at all times so I can monitor my progress.  A good rule of thumb is 1/2 your body weight in ounces per day.  ie: 100 lbs = 50 ozs per day.  Maybe if she could see it as a goal it would help?  Make it fun- show her you are doing it with her.

I got acupuncture the day before and day after chemo.  It helped with side effects and pain.  I am continuing acupuncture 1x a week now.  I also took supplements under the watchful eye of my naturopath.  Many of them can help ease all of the things being discussed.  We were careful to stop 48 hours before chemo and wait 48 hours after chemo so nothing would interact with the treatment. 

I am so very sorry that you and your mom are having to go through this.  She is very blessed to have you.  Please take good care of yourself as you care for her because she will fret and worry (which is not good for any of us) if she feels you aren't ok.  Spend time doing fun and normal things that you both enjoyed that bring you joy- music is an amazing tool to uplift the mood or even help one unburden- she sounds sad and perhaps hope is not as clear as it once was.  Whatever your beliefs try to focus on things to be thankful for each and every day... point out a lovely color, her pink cheeks, the sparkle in her eye- whatever you see that makes you thankful and encourage her to LIVE TODAY- it's really the only thing we all have- this very day

This is an adjustment for both of you-be patient with yourselves- you WILL find your new normal and maybe we will all find that the rest of our life can be the best of our life :D   (((HUGS))) and prayers for you both!!! 

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

We brought mom to the hospital yesterday, she has pneumonia and sepsis. Feeling better with the IV fluids and antibiotics today.  very glad we decided to bring her. 

MAbound
Posts: 906
Joined: Jun 2016

So sorry that things got so rough for her! (and you, too!) Praying that once the underlying infection gets taken care of that she'll be able to handle the rest with less difficulty going forward. At least you have some help with caring for her for awhile. You must be as exhausted as she is. There's a special place in heaven for you for all that you've been doing for her! God bless you!

Nellasing
Posts: 529
Joined: Oct 2016

So very glad you listened to your instinct- it's so hard to know, especially when it isn't your own body, when it's side effects or when it's an infection!!!  They warn everyone if your temp. is elevated to 100.5 to call right away. 

I agree with MAbound- I bet you are tired- I hope you can get some rest while others are keeping an eye on her. 

Continued prayers for you and your mama <3 <3  (((HUGS)))

janaes
Posts: 785
Joined: May 2016

Im glad you decidded to go to the hospital.  Your post reminded me of when i had cancer 23 years ago.  My mom was taking care of me most of the time.  I remember when i was doing chemo i wouldnt eat.  I dont remember how long i went with out eating because it has been so long ago but i do remember that my mom was worried about me enough to call the chemo office and told them about it and was told to bring me in and so in i went and was fed trough an iv for hours (cant remember how long that was either).  I didnt have to do it again and some how i made it through the rest of chemo and radiation at that time.  There is hope!!!

Hugs Janae

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

I just want to say again how grateful I am for this site and all of you beautiful people.  I feel very blessed. We talked with the oncologist here yesterday and because of this site I had a much better idea if questions I needed to ask.  Mom has improved so much! 

LARyan's picture
LARyan
Posts: 10
Joined: Nov 2016

One more question. she has a "sore" down below in the labia area. They found yesterday and are now thinking that perhaps that and not the pneumonia caused the sepsis. Her radiation treatments ended last September for the initial diagnosis.  Anyone experience anything similar? Doc said blood flow will be less in areas after radiation and what may have started as an irritation just developed more rapidly due to chemo and her diabetes. very personal I know? Also, anyone use essential oils during chemo? 

MAbound
Posts: 906
Joined: Jun 2016

You know, when I asked my gyn onc why he did all of my chemo first before radiation instead of using the "Sandwich" regimen like so many others have had and that's what he said to me, too. He's found that radiation damages blood flow in the pelvis causing complications with chemo after it. It makes some sense, but then I'm wondering why studies show the sandwich regimen to be statistically more effective? Lack of consensus on treating us sure causes concern when we need to make decisions on which direction to go. 

I've never used essential oils during chemo. What are you thinking they'd do? I'm using Aquafor during radiation as others have recommended because it doesn't have any perfumes. I was using Udderly Smooth during chemo because it was given to me to use during chemo from my doctor. Controlling blood sugars and hydration are probably more important to skin condition than anything external, though.

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

Just catching up after being out of town for a few days.  I'm sorry to hear about your mom, LARyan, and while being in the hospital is never fun, it sounds like your mom's body is getting some much needed help.  I, too, am hoping that when this infection is taken care of, her body will be able to handle the chemo better.

I have heard of people using essential oils to relieve stress and anxiety during chemo, though I have not done so myself.  I've seen lavender, chamomile and sweet orange mentioned.  You might want to seek out someone who has a degree of knowledge about such things and as always, run it by your mom's doctors, especially if you are thinking about topical application.

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