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Kajkam

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Hello - My mom (age 70) was recently diagnosed with Stage IV lung cancer.  She had her first chemo/ immunotherapy this past Tuesday. I am so frightened.  The change in her over the last two months has been so dramatic and upsetting.  At this point, she has severe leg pain (she does have a spot on her femur) which is not allowing her to sleep...she is then so tired all day and doesn’t want to eat...and this then just repeats the cycle.  She went to the hospital on Sunday and was given IV fluids and seemed a little better but then today after no sleep we repeat the fatigue and loss of appetite.  

   Is leg pain common?  How can I help her to eat so that she has energy and can get through the next chemo visits? That’s not until another 2 weeks.   Any advice would be appreciated!

  

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Hi Kajkam,

 Welcome here. I'm sorry to hear about your mom's diagnosis. A cancer diagnosis is bound to be frightening and upsetting for the family as well as the person with cancer. I'm sure you'll  hear from many others here who are caregivers who have been through or are going through similar things.

Pain is common when there is a metastasis to bone. My  mom had breast cancer with mets to her spine and got a lot of pain relief from radiation to the spot. 

My first suggestion is that you ask for a referral  to a pailiative care doctor. Some people hear "palliative care" and think it means the same as "hospice". It doesn't. Athough palliative care can be part of hospice, it's also appropriate for people who are having treatment for cancer and are not candidates for hospice. Palliative care docs help people with serious illnesses that are causing them pain and/or quality of life issues (such as fatigue and not eating). The issues they address can be caused by the illness itself or by the treatment. 

I' m sure you'll hear other suggestions from others here. These forums are a  good place to find information and support. Ask us for what you need. We're here to support you.

Bridget O

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Hi, Kajkam, and welcome!  

Bridget's given you some good suggestions.  You might also want to consult with an oncological nutritionist about making sure her nutritional needs are being met.  Lots of people have issues with nausea and loss of appetite while undergoing treatment.  If there are ANY foods that appeal to her--even those that don't seem particularly "healthy"--those can help ensure she's getting enough calories.  One of our survivors here, Tom (who will be along shortly), will tell you the only thing that appealed to him was mint ice cream, so he ate a LOT of it.

I hope she gets some pain relief soon.

Treatment can be debilitating, but often it's temporary.

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Kajkam,

Seeing our parent's health decline so rapidly is so scary and discouraging.  I went through it with my mom, who has advanced stage NSCLC - adenocarcinoma.  She had chemo and immunotherapy (carbo/alimta + Keytruda) too for a recurrence of lung cancer that was inoperable.  When she first started her treatment, she was doing so-so but really struggled for the months of August and September and spent nearly 2 weeks in the hospital for multiple infections.  I was so discouraged at the time because her first bout of lung cancer was a breeze for her to deal with.  This time, not so much.  But things got better. Lung cancer is a roller coaster, there are good days and not so good days.  Her "bad" days aren't as bad as they were last year, so there is progress.  The hard part for me is the "new normal". I hate that term, but ultimately that is what we have to do - find the new "normal".  I would imagine though that this is not your mom's "new normal" yet.  Starting lung cancer treatment is tough - not just the side effects, but managing all that comes with a new chronic disease diagnosis.  The chemo may be tough while she is on it, but if she is on a similar treatment plan as my mom (8 sessions of chemo + immunotherapy and then just immunotherapy) it is only temporary.  So, find the things she is willing to eat - whatever it may be, my mom lived on Costco rice bowls while on chemo. Get her to drink water any way you can. Her nutritionist suggested trying the fruit drink Kearns (it comes in lots of flavors) - it has lots of sugar, but at least not high fructose corn syrup.  It gave my mom helpful calories when she needed it most.  I also made smoothies for my mom - banana, almond milk, strawberries (or any other fruit that sounded good) and sometimes peanut butter. She also drank Instant Breakfast with almond milk (regular milk caused worse diarrhea). 

Do you know if there is a plan for radiation to the bone mets?  If not, they may just be planning that the chemo/immunotherapy will help shrink them.  Once they shrink/go away, the pain will likely subside and her quality of life will improve.  I ditto what Bridget suggested with finding a palliative care doc, the oncologist can likely make the referral.  

I'm sorry you and your family are having to deal with lung cancer.  It's a tough road, but a survivable one.  There are days that I feel down because my mom can't do everything as easily as she once had, but she still does the things she loves.  She still cares for my disabled father, runs her household, keeps up with her hobbies, and goes to concerts with me.  We just move at a slower pace and sometimes she needs to take oxygen.  I never would have expected to be saying this back in August because of the bad shape she was in, but it does get better. There is hope and I see it every day in my mom and all of my friends on this site.

Take care,

Steff

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Thank you so much for the information.  We did meet with a radiologist yesterday, but he didn’t seem convinced on that approach, so for now we will stick with the chemo and immunotherapy.  My mom’s legs have been pretty bad with arthritis through the years...and there’s not much muscle in them to hold up her body.  So, with the treatment, (and the mass in her femur), this has been a huge challenge for her.  The pain has caused a lack of sleep too - so between sleep deprivation and general treatment fatigue, she’s unable to even sit up and do much right now.  I talked to her this morning and she did get some actual sleep and did have 1/2 of a muffin this morning.  That’s actually a step up from yesterday.

Thank you, everyone, for your support!

 

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Hello - Am I correct in that radiation should help strengthen bones?  Mom started chemo and immunotherapy last week but now they’re talking to her about a radiation option because of her leg pain.  Thoughts?  Experiences?  Possible side effects?  I’m just trying to gather as much information as I can.

Thank you!

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Hi again,

I don't think radiation strengthens bones. I think it can shrink tumors in bones and thus reduce pain. But then, I'm not a doctor. This is a good question for a radiation oncologist

Bridget O

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I suppose it "strengthens" bones to the extent it zaps the tumor, since tumors weaken bones.  It should at least reduce the risk of fractures, I would think.  I'm not a doctor, either, and what little I know about radiation is what I've read online or learned from people here.  You'll hear shortly from some folks who have experience with radiation and who can probably tell you what kind of side effects are typical.

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Have had radiation for bone met. It does help pain usually. And my understanding is like Lexie's. It zaps the tumor which can weaken the bone to the point where it will break with just every day activities. I was cautioned to be careful for about 6 weeks after my radiation because the bone actually needs time to heal from the radiation also. There are also injections they can give her once a month that will help with the bone mets and strengthen her bones. I get those. I believe the medication is called Xgeva. But that's a phonetic spelling. Lexie will Google it for me and get an exact spelling.Lol. Plus, there's cementoplasty which I've also had where they inject something like bone cement into the bone to strengthen it. All this is now possible before they have to think about surgery with the bolts and rods to support it. She really has a lot of options. Medicine is making great strides in treating cancer recently. 

Judy M. 

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And the only side effects I've had from radiation is slight fatigue and some skin redness and burning. There are salves like Aquaphor which you can get at Wal Mart and apply a couple of times a day that will help prevent the burn. Also my Radiation area would sometimes sting a bit right after treatment. I put 100% Aloe Vera gel on immediately after and that stopped it. But for a bone met she may not have any of that because that usually doesn't take very many treatments. I'm a big fan of SBRT radiation if they can do that. Can't always. Didn't have that for my bone met, but wish I had. Have had it for 4 other tumors and works great in a very short time. 

Judy M

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They’re going to start radiation on Wednesday for the bone mets.  I really hope this alleviates some pain for my mom.  

Any advice for foods that are high calorie  - even for a small amount of it?  My mom needs to eat more.  She just says she’s not hungry.  We tried ensure but that didn’t work out well.  Thank you everyone for your advice and kindness!

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Well, there's ice cream, if she likes that.  Quite a few people here found it soothing and appetizing.  I think that's one of the key issues--it won't do much good to figure out the "best" food if she can't/won't eat it.  You might have to experiment a bit to find something she'll want to eat.  If she likes smoothies made with ice cream, you can always try sneaking some extra calories/nutrients into the mix.  Here's a link with some other suggestions: https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer/art-20045046.  I found that just by googling "high calorie food for cancer patients."

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Hi, Kajkam,

Welcome to LCSC. I'm glad to see that you've already connected with several members. LUNGevity often partners with the oncology nutrition experts at Savor Health. Here's a blog they recently published that may be helpful to you and your mom: https://lungevity.org/for-patients-caregivers/blogs/voices-from-the-community/promoting-weight-gain-during-cancer 

I would be happy to provide you with additional information about LUNGevity's support and education resources and programs as well.

Please continue to post updates on how you and your mom are doing. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Hello - It has definitely been a rough week. My mom had lots of energy on Tuesday and was eating well.  By Thursday she needed another IV fluid hydration and felt better after that.  Today, she is starting all over again with not eating or drinking much and unable to keep much down.  She is supposed to up her sodium levels, but it’s been a challenge to get her to take in and keep in much.  I’m not sure if this is a side effect from radiation - she just finished her 8th of 10 treatments.  

Any type of pedialyte or Gatorade, jello, popsicles seem to make her sick too.

  She’s very disheartened and continues to lose weight and lose strength.  Besides her sodium/fluid, her bloodwork is fine.  

Any advice or kind words would be appreciated.

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Hi,

Is she getting any anti-nausea medicine?. If not, I suggest she ask for  somethin. If she already had something, she could ask for something additiona or different. Have you looked a the Savor Health site that Lauren suggested abive?

All the best to you both.

Bridget O

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Well we found out the nausea was due to a uti, so mom has been in the hospital.  While there, they did an X-ray on her femur and the radiation didn’t do anything to change the tumor.  The orthopedic is worried about her fracturing something, so they’re going to put a rod in there (not sure when).  She still has only been able to have one chemo/immunotherapy appt., and they’ll probably hold off again.  Anyone with experience with this.  My mom still seems positive and hopeful...and she is eating!

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