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No Chemo Yesterday, But Did Have A CT Scan

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Doxil has given me mouth sores and I have tried two types of prescriptions medication.  My oncologist drop the Doxil last month 20% to see if that help.  It didn't.  He wanted me to have a ct scan to see if the chemo was working.  I have the results.  It is stable, didn't change since my last ct scan in April.

However, this ct scan went into far more depth than previous ones did.  I wonder if the oncologist asked for the whole report.  Since March I've been complaining about pain in the left upper front.

Though it is stable, the scapula and the clavicle have bone mets.  Wasn't reported last time and the report did go over where all the stable tumors are now.  I feel that I'm back in 2008 when I received the first ct scan that said, "we returned" and I had widespread mets in both lungs.  My ribs are stable which was the only bone mets I knew about.

Doris

Pixie Dust's picture
Pixie Dust
Posts: 314
Joined: Jan 2014

Doris, Maybe I can help you with your mouth sores. MY onc gave me a mouthwsh called magic wash for my mouth sores. It done nothing. Week end came along and it was getting worse so my husband called cancer center and the doctor on call said to take me to ER. They took me straight in. put a mask on me and put me in a wheelchair and took me to an isolation room and gave me IV fluids and did labwork. They told me I would be admitted but being their for seven hours and getting me stablized they let me go home. My mouth was nothing but sores and I could not eat, drink or I could not even hardly talk. I was severly dehydrated and had to have oxogen to breathe. They put this med on my tongue which was callled landocaine which is a numbing solution and it was such a help to me because I could not feel any pain. Later in a few minutes they told me if I could drink water from a straw they would let me go home. They stuck the straw way back in my mouth and did so. That med was wonderful. They gave me a bottle to bring home and told me to be very careful with using it because with the numbing sitution using it you could easily get choked eating or drinking by not being able to feel it in your mouth. I was not worried about eating anything at that time but did want to drink so I would not dehydrate. They also gave me another bottle of this so called magic mouthwash to bring home which I knew would not work but did not say anything to them about it because the doctors and nurses were very concerned about my health at the time and was wonderful taking care of me. To take care of the mouth sores which I found on the internet, I used 1 part peroxide and 3 parts water in a small cup and a childs soft toothbrush. Brushed my teeth, gums and tongue very lightly with this which did hurt a little. My tongue was so bad with sores it was black from blood seeping through. Do not put your toothbrush back into your cup for more liquid because you will just be putting bacteria back in your cup. Rinse it under water and then take little sips of drink out of your cup and brush until you think you are finished. After this, use the rest of the liquid in your cup to put in your mouth and swish in your mouth and then gargle. do this several times till you use it all but do not swallow it, spit it out. Do this several times throught out the day. Do this for several days. This was the very trick for me everytime I had Chemo. It worked great for me and I hope it does the same thing for you. Tell your Onc to write you a prescription for the lanocane for your mouth. I applied mine with a q-tip so I would only get a small thin  amount in my mouth. Let me know how this works for you. I hope everything else goes well for you. Hugs, Donna  (sorry it being so long)

New Flower
Posts: 4198
Joined: Aug 2009

Hi Doris,

 I cannot help you with mouth sores, however I am sending my positive thoughts your way. 

first of all, I am very sorry that your Scan results are still have evidence of disease and you do not feel well. Lets try to put a positive spin, and see a promise in the data. Stable - I learn from you it is not too bad. Your last Scan was only two months ago, which is a very short time to see improvement.  Radiologist did not see progression on your recent scan , and this is a very good sign. Sometimes radiologist could miss tumors, especially in bones. the only way to verify, is to go back and look at images to compare. Please talk to your doctor, who can explain inconsistencies to youand request detail re-evaluation of both scans. I also was told (because I have had similar situations) that often bone mets are more visible when they are in healing process, another words sclerotic lesons are easy to identify than lytic. last one, I know sounds like a very weird way of cheering you up: no matter how many tumors 1 or 10, the treatment is the same. Please do not loose hope, your remission is coming 

I hope tomorrow will be a better day for you.

Hugs

olga  

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

 

I am so sorry that you are going through all this.  Dear one, I so wish I could send a magic healing hug your way.   

This may not help, but I will mention it just in case you think it might be worth trying.  I was given Mugard rinse (a mucoadhesive rinse) for recurrent thrush while on Nystatin.  My onc said that the mugard is like a bandaid for the lining in your mouth and just helps it heal.  I was skeptical because it is mainly prescribed in the prevention and treatment of mouth sores associated with chemo, but it actually worked for me.  Magic mouthwash did not work.  Mugard is prescription only. 

Sending gentle (((hugs))) and praying that the cancer is stable. 

disneyfan2008
Posts: 5623
Joined: Oct 2010

NO advice..I did not have chemo

but thinking of you

 

Denise

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Thank you Donna and CC for helping me out with options.  I knew about Magic Mouthwash, some have good luck with it others don't.  However, I was a little surprise to hear my oncologist not react to it when I mentioned it last week.  I will ask for both prescriptions to be on my list or he can write one for each. Lanacane and Mugard so if one doesn't work, then I can try the other.

 

Donna, the peroxide and water sounds good too.

 

Since it's been 4 weeks since my reduce infusion of Doxil, the sores are healing.  Some of it was helped by what he gave me Mylanta Forte but the two huge ones on my tongue were still hurting on Wednesday but they are so much better.  However, I believe once I have my infusion on Wednesday, the whole thing will start up again.

 

Olga, I reliaze after looking through my ct scans that only my lungs were of interest to them and that is all that had been scan.  The last time that area was scan was back in 2011 when I was thinking of having the rotator cuff fixed.  I had this pain for a while but I thought it was due to my lymphedema which has worsen or the full thickness tear of the supraspinatus tendon in the rotator cuff of that arm.   I am planning on having 6 more session of therapy to my arm to try to reduce the edema.  It is only the top after the elbow that is a problem.  The rehab center wanted to try to reduce it.

 

Thanks again,

 

Doris

 

 

CypressCynthia's picture
CypressCynthia
Posts: 4017
Joined: Oct 2009

I am using a swab with peroxide and water once a day for my jaw osteonecrosis.  I tried using it as a rinse, in addition to chlorhexidine rinse, but I coudl not tolerate it.  Suddenly, everything tasted awful and I became really nauseated.  Ended up taking zofran...lol. 

BTW, I still have the hole in my jaw, same size as many months ago.  I added the peroide in hopes it might stimulate healing, but I have not noticed a difference.  I see the oral surgeon July 14th.  In the meantime, hoping the peroxide will help. 

Sending hugs and healing thoughts that your sores continue to heal and that you beat that beast back into remission again!

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi CC,

Can the surgeon fix that hole in your jaw?  I have a cousin who I think has the jaw problem.  There is a lot of arthritis in my family.  My sister has it and is receiving Boniva by IV.

I wish you well on July 14th.

Best to you,

Doris

camul's picture
camul
Posts: 2182
Joined: Dec 2010

Sometimes it is so hard to figure with the scans. I am being told that stable is a good thing, at least it is not growing, or if it is, the progression is slowing. Sorry about tue moth sores. I used the Biotene samples and peroxide with water as a mouthwash and Sensodine and Biotene tootpaste. One of them, or the combo of all of it worked, but that was when I was on weekly chemo. I expected it to just keep happening. Fortunately, once it had healed up, it never got so bad again. My tongue still was kind of raw but good compared to the open sores. I hope one of them works for you. Just wish this whole thing was not so hard. Hugs and hoping you feel better, Carol

VickiSam's picture
VickiSam
Posts: 8609
Joined: Aug 2009

I wish ..  i wish ..  i wish you clearer scans - no mouth sores - and strength.    Sending magic sprinkles your way.

 

Vicki Sam

Double Whammy's picture
Double Whammy
Posts: 2388
Joined: Jun 2010

I know you can't help but worry about results and mouth sores.  Stupid awful cancer!  I send some hugs and prayers your way for better news and relief.

Suzanne

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

It is better since I have been off chemo for 4 weeks.  However when I had both sides of my mouth and tongue, I couldn't talk and the only thing I could eat were soft foods, mostly popsicles, ice cream, yogurt.  My cousin told me to buy some Ensure, for nutrition, so I did.  I know they will start up again after my next treatment.

Thanks,

Doris

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

I hope I have a lot of the magic sprinkles fall on me.  I have been feeling rather down.

Thank you,

Doris

SIROD's picture
SIROD
Posts: 2204
Joined: Jun 2010

Hi,

I do have some biotene in my medicine cabinet.  I will try that tonight in hopes that it will be gone by Wednesday.  I assume I will resume with the treatment.  Well

NED is preferred but I don't expect it to happen anymore but I do like the "Stable Boy" because no increase is better than increase.  This report gave out all the areas which I had not scene in a while.  Usually the report states "no change" or only the area that had some increase.  

I changed oncologist last fall as I no longer wanted to travel to my oncologist who was an hour way through some slippery areas during the winter.  I suppose this oncologist wanted to see exactly what we were dealing with.  When I had mentioned the pain, he asked if I had known bone mets.  I replied "yes" and he asked why my previous oncologist didn't mention it.  She should have but we really did concentrate on the lungs and lining instead of the ribs.  She must have forgotten but I did bring him the ct scan report with the ribs mentioned.

How are you doing Carol?

Best,

Doris

cinnamonsmile
Posts: 1091
Joined: Dec 2010

I'm so sorry to hear about your troubles, dear Sirod. I am thinking about you, hoping things settle down.

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