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Does it ever go away?


Willw99

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I have not posted anything in this forum for some time now.

I have been looking after my dear wife of 36 years since she was dxd in April 07. It is really hard to see someone go through the treatments and feel so bad at the same time.

Diana has stage 4 nsclc affecting the right lung,the lymph nodes on the left side of the throat and a 3rd tumour on the adrenal glands.

She underwent 10 pallative radiation sessions in June and now has finished 3 of 4 cycles of cisplatin and gemcitabine.

Also she has had 3 blood transfusions between these last cycles because of low RBC.

She seems to me to get weaker and sicker after every treatment. She is extremely fatigued, nauseaous and has terrible mouth sores. She is a fighter but she seems to get more despondent daily.

For someone so active she says she wants her life back and wants this sickness to go away.

We still have 1 more chemo on Nov. 14th and 21st. A CT scan is scheduled for the 28th.

We were wondering what to expect then? What should we be asking the oncologist when we get a time to see him?

Diana tells me she won't do any more treatments if she is going to feel this bad all the time. It is relentless and does not give her a moment of peace.

I regret to say that she is still a smoker after 40+ years. To have her stop now would be more stressful than the therapy.Please don't suggest it. I have tried to get her to stop for over 30 years.

Her real pride and joy is our 15 month grandaughter and the one person I can count on to cheer her up.

Of course all this doesn't make it any easier for me. I don't wish to complain.Sometimes I wish I didn't feel so helpless and alone . I am very grateful for all the things and people I have in my life-BUT CANCER SUCKS!

With a grateful heart

Will

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Will, you can come here and talk or vent or whatever anytime. We are always here for you as I now you are for us. WE are all a team and we help each other out. My wife Mary has sclc and she was dxd 3-30-06. She has done 30 radiation treatments and is on her 3rd chemo drug. Mary has smoked for over 40 years and won't quit and I don't even bring it up anymore because I agree with you that it would be more stressful for her. AND CANCER DOES SUCK!!!!!! Our 1st grandson is due early Dec. and I am just praying that Mary feels well enough to travel to see him. As far as the Dr visit he will let you know what they saw on the CT and if the tumors have shrunk or stable. Then they should go over the treatmnt plan with you. I'm sure that others here will have more info for you. Keep us posted. Our prayers are with you.

Hawkeye

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Will-

I have only recently found this forum and wish I had found it when I was first dx'd. I cannot believe the outpouring of love and caring from everyone here. This is such a scary disease and it is definitely worse in the beginning because you do not know what to expect. But with the help of everyone here, at least you can find some reassurance and answers to some questions. Most of all, I think I can speak for everyone that you will have our thoughts and prayers coming your way. You and your wife will now be on the prayer line and I truly do believe that helps.

Cyber hug to you and your wife - please keep us posted on her progress!!

Patti B

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Will

I have no answers or suggestions but wanted to acknowledge your post and wish you and your wife the very best.

Once the she gets through the next treatements and scans and you get to see the doctor I am sure they will offer you some kind of options depending on what the scans show. There is a mouthwash, I believe it is referred to as "magic mouthwash" that may help with the sores in her mouth. I cannot recall the ingredients but I am sure if you do a search on here for Magic Mouthwash you will find the information.

Please ask the doctor about getting anti nausea meds for her. If she already has one, ask about having it changed. If she can get the nausea under control it will make a huge difference I am sure.

Please never worry about coming here to vent and complain if you need to. We are ALL here for you and we will do what we can to help you and Diana through this.

Warmly

Christine

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Could it be viscous lidocaine (not sure of the spelling) that is kind of a thick mouthwash that numbs your mouth? I believe you have to have a prescription for it. Also - you might want to ask your doctor about Lysine - I've heard of people taking it on a regular basis to prevent fever blisters...might be worth checking into - you can find it where all the vitamins are in the stores.

Yes - cancer sucks - I wish the best for you and your wife.

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I know how you feel, my mum has stage 4 nsclc and she has been through some radiation and chemo, and it has totally wiped her out beyond belief, that she couldnt even speak and she has been in bed for weeks. But she has now stopped the radiation and chemo and she is feeling so much better, and gradually getting back on her feet. after seeing her at her worst I dont want her to go through any more treatment, it just seems so awful and pointless. It is the hardest thing in the world to see someone sufering like that, and you do feel so alone, you are totally normal for feeling the way you do. Try and get some help too, I have a councilor becasue I just couldnt cope with it all and I was so scared and upset.

I really hope she feels a bit better soon

Take care

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Thank you Atlanta1.. Lidocaine is one of the ingredients in the mouthwash and yes it is by prescription. People who have posted about it here have had excellent results.

Lysine is excellent for cold sores. It cuts the breakout time in almost half. It is available in several forms, including a lip balm which is very soothing.

Hopefully the mouthwash information as well as the lysine will be of help

Christine

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Push the onc for a different anti-nausea med. Sometimes the "old stand-by" meds work better than the newer generation of expensive meds!

Seek out alternative treatment like accpuncture. It may help.

A soothing gentle full body massage is VERY relaxing, but if she doesn't feel up to going out, you can get some really nice massage lotions from Bath & Body Works and do it yourself! Touch can be very healing.

The side effects do tend to be cumulative...so don't expect a lot of improvement (other than what they can do with medications like the magic mouthwash, etc.) until after her last round is done. The fatigue is the one that really seemed to build up with my mom.

Ask the onc if a chemo break is possible. If not, perhaps a chemo that's not so rough would be tolerated better.

Best wishes to you and you other half. Do update us; visit sooner if we can help with anything!

Karen

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I want to thank everyone for their thoughts and prayers. I am looking into all the suggestions tomorrow. Your love and compassion for complete strangers in any stage of worry is so much appreciated by all.

With an eternally grateful heart for having all of you here,

Will

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Dear Will,

It is so hard to stand at the ready ~ willing to do ANYTHING to relieve your spouse's pain ~ with no idea what would help.

It is so hard to drive them to the cancer center for treatments, knowing they will feel worse after than before.

It is hard to keep saying all the positive things to keep her spirits up when you are sinking.

I know

I know

I know

I understand.

But loving her and standing by her and logging on for suggestions for easing her side effects are all acts of love and hope and charity.

Our role as caregivers is frustrating and heartbreaking.

When Brian had mouth sores I mixed up a concoction of childrens liquid benedry and Milk of Magnesia and had him swish and spit.

It made him SO much more comfortable.

Then I made him mashed potatoes (real potatoes, not instant) or scrambled eggs to eat.

Pudding was a big favorite of his.

mashed banana w/ a bit of creamy pnut butter really helped his potassium and energy.

I had him brush his teeth w/ just baking soda. Toothpaste has an ingredient that iritates sensitive mouths.

Keep on trying, Will.

I know she can feel your love.

Hugs and concern.

Pat

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Hi Will,

First of all welcome here, but so sorry you had to seek us out. Glad you did as you can see we really care and so mnay of us have walked in your shoes.

I know also being a caregiver how frustrating it is to see your love one hurting and feeling so helpless at the same time.

My Joel was lucky as he was able to have an operation (actually two) and then chemo. But he just wizzed by his chemo with no really bad side effects. Just bad leg pains around the 3d day. I used to massave his legs and his spine and that helped him tremendously. I was so relieved that he did not lose his appitite and was never neaseaus. That has to be a horrible side effect. I know there are different kinds of medications for neseaus. Maybe a different one will work. I am glad she is coming to the end of her treatments and pray for shrinkage.

Your wife has been through so much chemo that it really takes a toll on her. Poor woman, I feel so bad for her. She is getting so many side effects.

Try to take some of the advice here that is given to you. Anything that can help her get through this will benefit her demeaner.

I am so glad she is a fighter as she must never give up and let this monster win. She has to keep going and you have to be right by her side encouraging her which you are. You are a wonderful caring husband and I know how much it hurts...

Just know that we are always here for you for questions, support or prayers.

So glad you have joined our family.

I wish I had something to tell you that could help her but my husband thank G-d did not experience those types of side effects.

You will get many answers here as I see you have some already.

Hang strong... we are always here.

Maryanne

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Will-

My husband used to call it "baseball bat chemo" because it was like getting the crap beat out of you. The chemo drugs will take some of the good cells with the bad, just no getting around that. She has other easier options open to her once she's done with the hard stuff. Tarceva and Avastin were easy drugs and my husband had a good quality of life for a long time.

Let us know how she does.

Rochelle

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I read your post and feel your pain coming through your words. I am a new member of this forum and am just beginning the adventure of supporting my husband through his treatments. I am counting on this place to come for comfort and support. I know I will need it. I pray and know God is there for us, but He manifests himself through others, and you need to know that someone will always be there to lean on. God bless you and your wife.

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  • 3 weeks later...

I just wanted to let you know that my mom swishes with peroxide and colase. She says that she swallow a little of it. This last treatment she didn't get any sores at all. The only thing is that she did get a cold sore but the doctor said that could be a viral thing, not from the chemo. Will, I am adding you to my prayer list. Stephanie

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