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brenda40's Message Board Messages

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Haven't been on in a long while. Sooty for the delay How are things with you.

RE: skipping radiation

by brenda40 - February 11, 2012

On Feb 04, 2012 3:02 AM karenhasch wrote:

I just have so many questions and this is just one more.  My brother has throat cancer and has 7 treatments left.  He was hospitalized for 12 days for thrush and low white blood count due to the chemo.  He's home and back on the radiation.  Has anyone skipped radiation for that long and did they have to have extra treatments because of it.  The nurse today told him that he'll probably have to do more than the seven he has left because of the 12 day break.  His tongue is just on fire and it's hard to get any food past his tongue.  Has anyone skipped radiation and were they required to have more than the 35 treatments because of it?  Any suggestions for tongue burning besides the mouth rinse?  Thanks alot!

Karen

Hi Karen, So sorry for what you & your brother are going through. Be very careful not to skip treatments.  We took several breaks (3) due to all the same reasons.  When the cancer returned a few months after the 35 treatments we went to MD Anderson.  They agreed with all the treatment we had other than missing radiation.  I asked how they would have handled it & they told us that my husband would have been hospitalized and sedated if need be but that the radiation would have continued.  They say that for every day you skip that you increase the risk of reoccurence. 

Hang in there, Brenda

RE: Mugard Rinse for Mucucitis

by brenda40 - November 18, 2011

Hi John,  My husband says he wished it was on the market 3 years ago when he was radiated.  He only had magic mouthwash & caphasol.  He uses Mugard for the past 4 months.  Still gets mouth sores from the oral chemo...Xeloda.

Hard too get & very expensive.  4 bottles = 1,000.

Was only available through Bioscript but they no longer supply...Just changed to another Speciality pharmacy. Let mw know how it works for you.

Good luck

 

RE: Mouth Sores ?

by brenda40 - November 03, 2011

On Oct 27, 2011 6:57 PM Roselvr wrote:

On Oct 27, 2011 3:05 PM luvmyboxerz wrote:

Thanks Diane!

like your husband, this is the only time we have seen my Dad cry. My mom ( after 42 yrs of marriage, said the same thing)

he also wanted to stop the treatment about 3/4 through.

He has the morphine patch and takes something every 4 hours for pain.

this is really a wonderful group of people, thanks for your help!

The patch didn't work for my hub- we ended up with Actiq pops; he could use as little or as much as he needed & it was the only thing that helped the mouth/throat pain. I don't know if it's because he sucked on the pop & it coated everything but that was the best. It's made for cancer patients yet they always give the patch.

The husband used the magic mouthwash.  He thought it was just a simple , short lasting bandaid.  Taste bad.  There is a new product out called Mugard.  It is a Rx rinse & works great.  It is available through Bioscript only.  Can't get it from the local pharmacy.  Very pricy too.  About 1,000 for 4 bottles but was very fortunate that the insurance paid for it.  I think the manfacturer will even send you a sample bottle. 

Another product we he used was Caphasol.  It's a 2 part mix that you use as a rinse.  We actually have an extra case if you are interested.  Let me know & we would be happy to send it to you.

Good Luck, Brenda

Hi Sharon,

First, I respect your decison for whats best for you.  But I feel the need to share (thats what we are here for anyway, right?)--

My husband, like you had a tonsil tumor but he's got 2 years on you.  11/2008.  Last Nov. life looked very bleak for us.  We were told that my husband's tumor was a cm away from the caroid artery & invasion was iniment.  We started high dose Vit C with curcumin infusion through his port.  We have continued with thistwice a week.  Not to say we didn't elect a chemo that was targeted for his tumor.  (we had tumor testing done) I'm blessed to say that he is doing well.  Its not one thing alone but the combination with a strong faith to continue the battle.  And thats what we are doing.Let me know if you want to talk but let me say to try and keep an open mind.

Hang in there , Brenda

Hi Sharon,

First, I respect your decison for whats best for you.  But I feel the need to share (thats what we are here for anyway, right?)--

My husband, like you had a tonsil tumor but he's got 2 years on you.  11/2008.  Last Nov. life looked very bleak for us.  We were told that my husband's tumor was a cm away from the caroid artery & invasion was iniment.  We started high dose Vit C with curcumin infusion through his port.  We have continued with thistwice a week.  Not to say we didn't elect a chemo that was targeted for his tumor.  (we had tumor testing done) I'm blessed to say that he is doing well.  Its not one thing alone but the combination with a strong faith to continue the battle.  And thats what we are doing.Let me know if you want to talk but let me say to try and keep an open mind.

Hang in there , Brenda

Hi Sharon,

First, I respect your decison for whats best for you.  But I feel the need to share (thats what we are here for anyway, right?)--

My husband, like you had a tonsil tumor but he's got 2 years on you.  11/2008.  Last Nov. life looked very bleak for us.  We were told that my husband's tumor was a cm away from the caroid artery & invasion was iniment.  We started high dose Vit C with curcumin infusion through his port.  We have continued with thistwice a week.  Not to say we didn't elect a chemo that was targeted for his tumor.  (we had tumor testing done) I'm blessed to say that he is doing well.  Its not one thing alone but the combination with a strong faith to continue the battle.  And thats what we are doing.Let me know if you want to talk but let me say to try and keep an open mind.

Hang in there , Brenda

On Apr 01, 2011 9:46 PM JillCGB wrote:

My husband has been diagnosed with a possible primary tumour in his tonsil and a metatstatic secondary in his neck.  We live in the UK and have been told that they arent quite sure where the primary is but the tonsil is the most likely site.  The secondary is inoperable as it has adhered itself to the carotid artery and other structures in his neck.  He is having his tonsils removed in 2 days along with biopsies of this tongue, back of nose and oesophagus (if needed).  We are very worried and would like some assurance that he will be ok and we will come through this

Hi Jill,

Just checking in to see how things are going?  Any new news?  Thinking about you.  Brenda

RE: Cancer is back

by brenda40 - April 02, 2011

Hi Steven,  I'm sorry for you unrest.  My husband is fighting the samce battle.  Many times I think he fights the fight because of his family.  Is it back in the same primary site? 
I'll be praying for you this weekend.  Hang in there.

Brenda

Hi , I sent you a private message regarding your husbands diagnosis.  Let me know you you would like to talk.

Brenda

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About brenda40

Caregiver
Head and Neck Cancer, Tonsils Cancer
Acupuncture, After Treatment, Alternative Treatments, Cancer Nutrition, Cancer Prevention, Clinical Trials and Research, Conventional Treatments, Supplements, Support

11/4/2010- Just added a picture- Was taken last week on a trip to NYC. The man in the pic is my husband, Manjit. He sure doesn't look like what he's been through. He would disagree. His beard won't grow back after the radiation so he decided to grow a mustache. (I'm the blonde with him.) Here's the story. Manjit was diagnosed with stage IV tonsilliar cancer in Nov,08. The tonsil was surgically removed, chemo started. Then radiation as well as more biological (Erbitux) therapy. 1st post therapy PET & CT were clear in August, 09. Now 2 months later after continuous complaints about the sore throat, fatigue, raspy voice & increased dryness the ENT found a spot in the tonsilliar area that is suspicious & scheduled a biopsy for Wed 11/10/2009. We had received such a positive outlook from the oncology team that we never really thought about re-occurrence. Not really prepared. The cancer had travelled into 3 lymph nodes at the original diagnosis & we even considered the neck dissection. We were convinced that this was not the best treatment choice & trusted the team of professionals who treat this everyday? Any advice? Really scared! Please pray for this man that I adore for having the courage & strength to keep fighting this ugly disease. Thanks...Update. 11/4/2010-turned out that the biopsy was + again for SCC. Unfortunately, the PET showed nodes on the lung. Was given 6 months! We refused to accept that. Went to MD Anderson, Texas - they agreed! Well, by late November a Chest CT showed that the nodes were smaller & maybe it was infection & not mets to the lung. More anti fungal, anti bacterial & anti viral meds. They shrunk more. Great news but now we had to deal with the neck. 12/15/2009 had a selective Neck Dissection with 18 nodes removed. All - ! Thought it was over. Wrong- by Jan, 2010(1 month later) the nodes were back & growing. By April- much more & determined that it was definitely metastatic disease. We had the tumor tested in Dec. for the targeted therapy. Time to use it. The gene was positive for the Her2Neu gene. Currently on Tykerb (used for breast cancer) & it is working. Shrinking & no new disease. Unfortunately, it has returned to the same tonsilliar region again. Went to Sloan Kettering Memorial last week & met with 3 docs & got 3 different opinions. Actually, we came home confused & met with yet another doc here who can feel the actual tumor in the throat & feels he can laser it. Taking each day as a gift and trying to live it to the fullest!

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