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I look like I have Chicken Pox, no more chemo, doctor made the decision....

camul's picture
camul
Posts: 2012
Joined: Dec 2010

I don't have to make the decision, the doctor stopped the chemo. I went to the pharmacy and the Pharmacist looked at the rash on my face and neck, told him it was everywhere, what should I buy? He made me call my doctor, said it was an allergic reaction to the chemo. The doctor told me to stop the chemo, take Benedryl for the next 2 days and I will see him on Monday. He said if my breathing gets difficult to call him and go to the ER.
Now that he made the decision to stop it, part of me is relieved and the other part is scared. Even though I have been miserable since starting it.
Prayers and hugs to all,
Carol

I have been on Afinitor and Exemestane for 5 weeks now and have sores that look like chicken pox everywhere. Start out with a red blister like pimple thing, then they crust over like a chicken pox and itch like crazy. Showed the doctor when I just had a few on my face and he said it is from the chemo. Now they are covering my back, chest and some on my stomach and legs and a few on my scalp. They are miserable. Tonight is the worst of this rash.

Called the nurse Tuesday afternoon because my chest (ribs actually) were so painful. Finished scripts of antibiotics and steroids less than a week ago and my chest felt so tight and really hurt, but my breathing was good. Covering Dr called in refills for both (my dr is on vaca til 26th), while my son went to pick them up. I went to throw in a load of whites and when I picked up the nightgown I wore Sunday, my Fentenyl patch fell out. The chest pain was from no pain meds for 2 days, didn't take the new meds, put on a new patch. Felt much better about 6 hours later. That is the 2nd one out of the box of 5 where the glue did not stick. They are so expensive, and I have to explain why they didn't last the full 30 days.

On Thursday I got my package for open enrollment for insurance for long term disability. 2 months ago I got a letter from the Insurance Company that determines eligibility that after review of my case, my long term disability was extended til 10/2016, which is 5 years per the guidelines of our union contract. The company is stating it ends April 30, 2013.... big difference. Called benefits Tuesday, they put in an inquiry. Asked who makes the determination, was told the insurance company. Said they would let me know today, today they said 5 more business days, so that means after Thanksgiving.

I do not have the patience of a saint to begin with. Am questioning this chemo and the se. At my last visit with my onco 2 weeks ago, he asked if I felt the chemo was working, I laughed. How could I know, I was on this chemo for 3 days when I got sick with the bronchial infection, I wake up 3-4 days a week now with a headache from hell, my face is puffy from all the steroids in the last month, and I have these sores all over my body.... and I sleep way more than I am awake again. Now how would I know if it is working. I am seriously thinking of stopping it.

My ex called this morning and when I said that if all of this is for a few months longer and this is as good as it gets, then I am stopping it. He told me that is like suicide as I know the outcome with out it, tried to explain there is no guarantee with it, and I may be losing my medical and life insurance in April.

I am so frustrated and tired of all of this. Thanks for listening to the whine!

SIROD's picture
SIROD
Posts: 2118
Joined: Jun 2010

Cancer Centers have programs. I know as I inquired about losing my insurance or having to pay a lot more than I do now when I retire in June. The patient advocate showed me to programs that are available and told me that there are programs that have grants for those like us in these sort of situations.

I wear Fentanyl patches too. I've been on these patches for over 18 months. The other day, I did have a patch that fell off. I wondered for a day why I wasn't feeling good. What ever you do, don't put tape to keep them on.

Rash is a side effect of Afinitor. Can you use some calamine lotion?

Best,

Doris

fauxma's picture
fauxma
Posts: 3531
Joined: Dec 2008

Camul,
I am so sorry that you are going through all of this. Only you can decide whether these S/E are worth what they will give you in terms of time. I think you EX is so wrong to tell you that stopping treatment is like suicide. It is an issue of quality over quantity. Some people choose to fight until the very end in spite of horrible S/E and others decide that instead of going to treatments and dealing with the effects that they wish to spend their time doing things they enjoy and that bring them happiness. It is a tough and terrible decision to have to make and one that only you can make. You can listen to all your family and friends and hear what they have to say but ultimately it is your life and how you live it must be what gives you peace. I wished to think that I knew what I would decide but I realize now that I won't know until I am actually facaing that moment. I wish you peace and love and hope that your side effect diminish and become more manageable. I also wish you comfort with whichever decision you make. And most of all I will keep you and your family in my prayers. Bless you dear Camul.
Stef

camul's picture
camul
Posts: 2012
Joined: Dec 2010

I went to the pharmacy to pick up my prescription and showed the phamacist the 'rash'. He said that it is an allergic reaction to the Afinitor and had me call my doctor, who is out of town so I got his covering doctor who I really like. He told me to stop the chemo, take 2 Benedryl tonight and one tomorrow am and Sunday and he wants to see me Monday.

Thanks for the support, I guess I don't have to make this decision, it was made for me.

Carol

New Flower
Posts: 3938
Joined: Aug 2009

Dear Carol,
I am very sorry for horrible allergic reaction from a medicine that suppose to help you in your fight. I hope Benadryl will be help you quickly, and you will not need a stronger anti-allergy meds. You might want to ask for a steroid-containing cream to ease the rash.
As far as LTD insurance go, you do not have to accept unfavorable decision. Please make sure to appeal in writing. It is insurance practice to cancel, assuming people will give up. maybe you need a social worker or advocate's help.
Please know that you are always in my thoughts
New Flower

Lynn Smith
Posts: 1265
Joined: Mar 2011

I hate you need to stop the chemo.Wonder if it's just this chemo and there could be others they can try.Although I know you are fed up and discouraged.

I Hope it gets better for your insurance. Things are different now with our insurance.We have a deductible.Pay so much then insurance pays.Just found out I need vitamins.I can get a IV for that.Faster than taking vitamins.I agree and I need a boost now. I called the insurance company.I pay for this.I think insurance is going to get worst for ALL of us.Not better!!!!

It upsets me you have bronchitis.It has been for me the worst thing especially when you think it's not much more but a bad cold.Well it is MUCH MUCH worse.I had it for over 2 months and still have mucous.This stuff is worst beside pneumonia.And it can turn into that.Antibiotics didn't touch it.It's what wore me down.

Thoughts and Prayers to you.Get rest and hope all the problems subside soon and the doctor knows of something else to help you(If you want it). We're all thinking of you and wishing you the best.

Lynn Smith

camul's picture
camul
Posts: 2012
Joined: Dec 2010

I got my human services degree to be an advocate after my first bout and going through all the ssi stuff for my mom when she had a stroke. I can't do anything until they finish their 'inquiry' and give me their decision. If they deny it then I will appeal it in writing and most likely get some legal help.
I was glad to read your post because that is the same thing I was thinking. The doctor told me not to put anything on it, but I bet he will have me use cortisone cream when he see's it!

SIROD's picture
SIROD
Posts: 2118
Joined: Jun 2010

Carol,

Is there any reason why you can't retry a hormonal drug like Aromasin? I remembered you had tried Tamoxifen so you were ER+. I know the line oncologist state: "tumors no longer respond to hormonal drug treatments". I have heard it over and over and yet, I insisted on hormonal and it worked twice. I believe that the cancer cells don't recognize the drug and pack their bags and leave. I know mine have the code to deactivate Faslodex as they did in 2009 yet, they are packing and going wherever they go. Just a thought.

Would there be any harm in retrying a hormonal drug for you?

I hope the benadryl is working it's magic and you have some comfort.

Doris

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

I am so sorry that your have a rash on your entire body.

Doris has some great advise and ideas for you going forward. Olga as provide
some much needed options.

I pray for options, comfort, and strength for you, Carol.

You are my hero, rash and all!

Vicki Sam

jennytwist
Posts: 713
Joined: Sep 2009

hear about your rash - almost sounds like shingles run rampant - take care and know you are in my prayers daily -
much love,
Jenny

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

CRAP! The girls have given some really good suggestions. I'm hoping they get to the bottom of this, it clears, and you are able to resume some alternative treatment soon. You certainly deserve some smooth sailing for awhile, and I'm praying for that for you.

Love and hugs, Renee

aisling8's picture
aisling8
Posts: 1251
Joined: Feb 2010

Hoping the Benadryl is working. Once your rash is tended to maybe the oncologist will have other suggestions for you.

Sending lots of love. Maybe I should send Calamine lotion instead?

Victoria

camul's picture
camul
Posts: 2012
Joined: Dec 2010

Maybe he will say I need a trip home, except I sleep too much. Having a hard time not scratching.

camul's picture
camul
Posts: 2012
Joined: Dec 2010

I don't know about hero, but I do keep praying that there will be other options. My mind has not quit fighting, but my body is not tolerating it.

I just keep praying and reading to see if anything else could work!

Hugs,
Carol

camul's picture
camul
Posts: 2012
Joined: Dec 2010

When the Tamoxifen became toxic, I started on Evista which is a different hormone blocker, I was only without one for about a month once the swelling was gone, almost 30 lbs in that month, then I started on the Evista. Only stopped it with this new chemo/Exestemane (sp), I don't know if I will start back on the Evista until the 29th when I see my onco. After 2 years of chemo, my body is no longer tolerating it.

So far the Benadryl works on the itching. until it wears off. I willto see the on call dr tomorrow. This is miserable, then I read Kat's post and thought what in the world am I complaining about.

CypressCynthia's picture
CypressCynthia
Posts: 3913
Joined: Oct 2009

Just some random thoughts as I am hurrying to work in a sec.....

Benadryl is tough to tolerate longterm. Have you asked about a long-acting non-drowsy antihistamine (zyrtec, allegra, claritin)? Dermatologists often use more than recommended doses for certain rashes. It wouldn't hurt to run it by a dermatologist.

Noone can tell you here what or what not to do, but my key to being compliant has always been my attitude that I WILL manage my side effects. Sometimes, it is as simple as a fentanyl patch (something Doris recommended). For me, it is like a puzzle to be solved and I keep googling and picking brains until I find what works for me. Almost all of the hormone treatments can cause weight gain and I am battling that now: trying to cut back portions and walk more.

I know some side effects are not manageable and are life-threatening and then, I move to another treatment. Don't give up! Keep looking for a way to manage these side effects if you can.

Good luck! Big hugs and prayers!

camul's picture
camul
Posts: 2012
Joined: Dec 2010

I am on the Fentanyl patch about 5 months now. I have been off the chemo for a week and am finally feeling somewhat better. I have only been taking the Benadryl at night if I am itchy. I agree it is hard on the body. They took me off the last chemo because of repeated UTI's. This time within 3 days of starting chemo I got a bronchial infection. The doctor feels my immune system is no longer tolerating chemo after almost 2 years.

I really don't know what to think. I was so hopeful that the Afinitor would give me more time. I see my Onco on the 29th and I am hopeful for other options. But sleeping 18-20 hours a day is not any quality of life. I don't know if that was the chemo alone or the infection as I was fighting that the whole time I was on it. The cough and wheezing stopped when I stopped the chemo. It makes me believe there was no infection as the xray's were clear from the beginning, and the coughing and wheezing were noted s/e of the chemo.

Now I will see if there are any other options when I see my onco in 6 days.

Gabe N Abby Mom's picture
Gabe N Abby Mom
Posts: 2415
Joined: Sep 2010

Carol, I am so sorry I missed all this. It sounds like you're feeling a little better...I just wish you didn't have to wait to see your doc.

Personally, I think part of all the sleeping was fighting the infection. I know that for a while before I was in the hospital with the shingles, I was sleeping nearly 20 hours a day. Looking back, I can see that what I thought was rads fatigue, was really fighting infections...well maybe a little rads fatigue.

I know that whatever you and the doctor decide to do, it will be right for you. And I hope that you will have many many more days with your family.

Hugs,

Linda

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Dear Camul...
Gosh darn it. I am so terribly sorry that you are going through all that. It makes my heart sad. I am so glad that Doris has some ideas for you to look at. Whatever choices you need to make, bring us Pinks with you in spirit. Know that we support you and care about you! Let our spirits help yours.
Sincerely,
Cinnamonsmile

stefanhall
Posts: 1
Joined: Nov 2012

Sad to know that, just stop the chemo, maybe there are many side effects of it. If it is chicken pox, you can apply natural remedies and treatments like bathing procedure using oatmeal. I've learned a lot in this site: http://www.FastChickenPoxCure.com hope it work in you too.

carkris's picture
carkris
Posts: 4518
Joined: Aug 2009

Iknow people who were diagnosed with allergy,can be desensitzed. I wonder if it would help to be pemedicated, and then take claritin or zyrtec during? I am sorry your body is gettin worn down from the chemo hugs!

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

Any better ??

Please update when you can, dear Sister!

Vicki Sam

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