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Lumps popping out all over (Recap of Lost Posts, Topic Created by KatnHat on Dec 19, 2018)

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cmb
Posts: 354
Joined: Jan 2018

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

KatnHat

Dec 19, 2018 - 7:51 pm

Hi all, haven't posted much since I found out my cancer spread 6 months after completion of treatment last year (hysterectomy, chemo, radiation). When I did post, I was so depressed to hear EditGirl and LouAnn had passed away, I just couldn't bring myself to even lurk. But now I'm back, in short, after two clinical trials that had partial effect but in the long run, failed.

I just started Doxicil as of last Wed. and I'm hoping to add Avastin. Cancer has spread to lungs, liver, kidney, vaginal cuff and, oddly, muscle. About two weeks ago, I started getting bumps and lumps in my upper torso, front of shoulder, back of arm, posterior back, rib cage, both posterior shoulder. The ones on my front shoulder and back are big, about the size of a flattened apricot, the others about the size of an almond. They don't hurt except for the back; if I sit down for more than five minutes, I get a burning, tearing pain that is somewhat alleviated by standing and walking around. So I don't go to movies or other shows anymore! It is surmised by my new oncologist (I moved in October) that it's cancer in my chest wall pushing against muscle fibers. The stretching of the fibers is causing pain. Has anyone else had this or heard of it?

I'm trying to keep optimistic but when I'm in pain (plus nausea from Doxicil), it gets difficult. I'm just hoping for the best right now; I know it's rather drastic to have so much spread.

 

CheeseQueen57

Dec 19, 2018 - 7:59 pm

Welcome Back

Let us be there to support you. You’ve been through so much. I hope your new regime is helpful and they can control your pain. We’re all here for you and extra prayers for you tonight. 

 

MAbound

Dec 19, 2018 - 8:25 pm

It's hard.

I miss Lou Ann's fortitude and Chris' calming touch all of the time, so I get how hearing of their loss must have impacted you. Sometimes the best thing to help cope is to step back when you need to.

What you are experiencing sounds so scary. I'm such a baby when it comes to pain and can't imagine how you are getting through each day. Like CQ, I'm really hoping that the Dox gives you the relief you need without causing new problems. I wish I had some constructive suggestion that I could give you for this, but I don't have a similar experience to draw from. Just know that I'm sending hugs and saying prayers for you.

 

derMaus

Dec 19, 2018 - 9:40 pm

Oh, Kat! You have indeed been

Oh, Kat! You have indeed been through the wringer. Know that you're loved and supported and we're here for you, any time. Do they have you on any continuous pain relief? I used Fentanyl patches in increasing doses when my tumor was growing so rapidly, and it helped a lot. I'm praying for you to get some relief, and fast. Love, B

 

EZLiving66

Dec 19, 2018 - 11:00 pm

I am so sorry but hopefully,

I am so sorry but hopefully, your new treatment will start to shrink those tumors. I have never heard of what you're experiencing but hope the pain can be controlled. As the others have said, you've found a safe place here. I too was affected by the loss of those ladies along with others here but encouraged so many others have survived and thrived.

(((Kat)))

Love,

Eldri

 

ConnieSW

Dec 20, 2018 - 10:40 am

Once again

I find myself with no adequate words. From the bottom of my heart I am hoping the doxil works and you find adequate pain relief. 

 

cmb

Dec 20, 2018 - 3:44 pm

So sorry

I'm so sorry to learn that you've been struggling with treatments that haven't yet been fully effective and that your pain is so debilitating right now. I hope the new regimen is more successful and that you're able to take some medication to relieve the pain in the meantime. 

 

evolo58

Dec 20, 2018 - 6:54 pm

Hope you'll get relief

Once the Doxil/Avastin stars working. I'm so sorry to read that you're having such a hard time. 

And yes, I too miss Lou Ann and Chris, as well as Daylady.

 

Northwoodsgirl

Dec 20, 2018 - 8:03 pm

KatnHat

Thank you for your posting and questions Kat. You have been through so much... It makes sense that anything pressing on nerves will cause pain. I hope your doctor and pharmacist are able to find the right combination of meds to at least improve your pain level. I’ll keep you in my prayers for the Doxil to work and shrink the cancer and eliminate your pain. I too miss the many women on this board who have passed on before us. 

((Hug))

Lori 

 

janaes

Dec 20, 2018 - 8:35 pm

Canhat, Im so glad you are

Canhat, Im so glad you are here. I too miss the two wonderful ladies plus others. They were such a strength and support to me. I think of them still

You have been through alot. I hope this new treatment will work for you. Your showing all of us what fighting really means. I pray for you!

Kanae

 

LisaPizza

Dec 21, 2018 - 12:16 pm

I'm  so sorry to hear this. I

I'm  so sorry to hear this. I wonder if they could treat at least the painful lump on your back with radiation  to relieve the pain and make walking and sitting comfortable again.

 

KatnHat

Dec 22, 2018 - 12:56 am

Thanbk you so much!

Wow, I really needed to read these words. I feel so much better, physically and mentally. I'm now taking Norco, 5 mg for pain, and just trying to take it easy. I actually emailed my doc the other day in a bit of a panic and he said "It's too soon; let the Doxil work. Be optimistic." Cryptic but comforting!

My nausea is basicallhy gone, so that makes me feel better as well. My sister rented a huge house about 10 miles from us and we're seeing siblings and other family members for the holidays. The distraction is great. I go in the 26th for an infusion of Avastin and will see how I do.

I'm just going to hang in there and take one day at a time. You all helped my determination so much!

Kat

 

Universe

Dec 22, 2018 - 2:39 am

Hi Kat

 Best wishes to you. 

 

EZLiving66

Dec 22, 2018 - 1:39 pm

(((Kat))) I hope you have a

(((Kat))) I hope you have a wonderful Christmas with your family. 

Love, 

Eldri

 

BluebirdOne

Dec 22, 2018 - 5:44 pm

KatnHat

So happy that you are doing better. A little family love and support can work magic on mood and outlook. Good luck on the 26th and we are rooting for you. 

 

ConnieSW

Dec 22, 2018 - 5:11 pm

Bless

your sister. Have a wonderful Christmas with your family. 

 

Northwoodsgirl

Dec 22, 2018 - 7:23 pm

Time with your family

Oh Kat! Getting together with your family in a big house with room for everyone sounds wonderful! It reminds me of renting large houses on the Outer Banks of North Carolina has long been a favorite thing to do in order for everyone to stay comfortably under the same roof. I hope the house will have a mezmerizing fireplace. Your sister was very thoughtful! 

Lori

 

NoTimeForCancer

Dec 23, 2018 - 9:14 pm

Kat, I was away and am only

Kat, I was away and am only seeing your post now.  Dear, oh how I stopped to pray for you just now, for strength and healing.  Enjoy the time with everyone and know you are loved.

 

KatnHat

Dec 24, 2018 - 2:15 pm

Thanks for your prayers!

And to everyone else for their kind and supportive words.

 

TeddyandBears_Mom

Dec 24, 2018 - 2:47 pm

Kat, I hope you continue to

Kat, I hope you continue to feel better and enjoy the priceless time with your family!

Love and Hugs,

Cindi

 

KatnHat

Jan 25, 2019 - 12:53 am

I'm doing much better!

I seem to be responding well to the Doxil/Carboplatin once an month and Avastin twice a month. My tumors that were popping out have shrunk considerably and best thing--no pain. I feeling okay except for my persistent cough, which is to be expected with the spread of the cancer. I mean, it's spread to almost every internal organ from my lungs to my liver to my kidneys, plus muscle. I have a little lymphadema and neuropathy in my feet, but I'm doing icing at the infusion center and that seems to help. Sometimes I go to a dark place in my mind, knowing that such a quick recurrence after all my treatment really doesn't lead to a good prognosis, but as long as I feel healthy and somewhat strong, I'll keep doing what I have to. My husband and I moved to a wonderful home 3 blocks from the ocean and I swear seeing those waves every day is helping me heal.

 

derMaus

Jan 25, 2019 - 2:08 am

Oh Kat, I'm so glad to hear

Oh Kat, I'm so glad to hear that the pain is receeding along with the lumps! That's wonderful new. I'm happy to imagine you in your new home, watching the waves and healing in body and spirit. Be well, B

 

Jairoldi

Jan 25, 2019 - 6:02 am

Relief

So glad have relied from the pain and that the rumors have shrunk. I can't imagine the emotional.path you have been taking. May you experience continued benefits from your treatment.

 

NoTimeForCancer

Jan 25, 2019 - 7:12 am

Kat, so glad to hear about

Kat, so glad to hear about the tumor shrinkage and no pain.  Go and enjoy the calming waves and breathe deep.  Hugs

 

barnyardgal

Jan 25, 2019 - 8:32 am

I'm so glad to hear the

I'm so glad to hear the treatment is working. Enjoy your new house!

 

zsazsa1

Jan 25, 2019 - 9:28 am

That is wonderful that the

That is wonderful that the tumors are responding to the treatment and that you are comfortable.  Wishing it continues improving.

 

Lulu7582

Jan 25, 2019 - 3:08 pm

Good news

Yes I too am very happy you are responding to the treatment. It's amazing how pain can be so debilitating and a downer so I am happy the pain has improved and you have a better quality of life. Enjoy this time, get out of the house. Go do fun things and I pray that the treatments continue to kill the little beasts so you have many more good days! Hugs xoxo

 

SF73

Jan 25, 2019 - 8:36 pm

So happy to hear your great

So happy to hear your great news! Please don’t let your mind go to dark places. I sometimes visit the ovarian cancer page of Inspire. There are many ladies there who have experienced severe recurrences soon after thei front line treatment and then experienced 10-20 years of NED. it really is possible to achieve a long cancer free life even after a nasty recurrence.

 

LisaPizza

Jan 25, 2019 - 11:29 pm

That's inspiring to hear.

That's inspiring to hear.

 

Universe

Jan 26, 2019 - 4:31 am

Great news

KathHat

evolo58
Posts: 293
Joined: Dec 2017

Looks like my insurance company is digging its heels as well, and I also have to resort to applying to the manufacturer. About the only good thing is that my doctor's office has told me a number of times NOT to panic when I look at the cost of the rejected Avastins. They told me a number of times that under no circumstances am I going to be paying nearly as much. I hope they're right! Even if I were to pawn off all the jewelry and other stuffI had, it would be barely enough to keep the infusion seat warm for ten minutes! Maybe fifteen if I get a really good price.

I really, really hope you're continuing to do well, KatnHat. Hope to hear from you soon! And thank you so much for archiving the threads, cmb!

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