Hi everybody,

My mom just got her first PET/CT scan Friday since she completed her radiation the first week in March. She will see her doctor for the reading on Wednesday so I'm a little nervous for that. She had a scan the second week into radiation so they will compare the scan's. She said the experience this time was terrible her appointment was at 12:15pm and they didn't finish until 6:30pm because the machine kept breaking down. She is really exhausted from going back to work (she works a 9/80 so her days are pretty long). I'm praying that everything is ok. I just hate all this waiting........

Thanks for letting me vent.

Dani

Hang in there Danielle...I sure know all about the waiting. It can really eat you up! I will keep you and your mom in my prayers that the scans are clear!!
Deb

Hi Dani,
I will keep my fingers crossed and be thinking of you and your mom on Wednesday.
Love,
Minnie

Dani,

I know the waiting game is the worst! I can't believe your mom's back to work. Tell he to be gentle with herself. She is really fortunate to have you for a daughter who cares so much about getting good information. I hoping for only good news!!

Lynn

Thank you Debbie, Minnie and Lynn,

Sometimes I think my mom doesn't tell me stuff so that I don't worry too much about her. I am sooo worried about the scan results. My sister got more information and filled me in on what is going on. Apparently when she was at the dentist last Wednesday her dentist noticed that the bone was exposed where she had a skin graph so he called her ENT. Originally she was not supposed to see him again for 2 months but now he wants to go over the scan with her in person tommorrow. He was just going to call her with the scan results but since apparently the bone is exposed he needs to check it out. My mom has been in a lot pain lately and since the bone is exposed it makes sense that she would be in pain. This really has me freaked out. I will know more tommorrow and I will keep you all posted as to what is going on.

Thanks for your support.

Dani

Dani ..your mum is one tough lady..she is trying to protect you as much as she can. Just keep on doing what you are doing , loving her and being there when she needs you.
Good wishes coming your way.
Take care
Marica
----------
Caregiver to husband Pete Stage IV Scc last treatment July 2003 and doing great.

Hoping for the best news in the world Dani!!!

Your mom deserves it. So do you!!!

Best of wishes,

Dan

Hi Dani
I'm trying to protect my Mom from to much.. so I suppose she can do it to.. your love will be the best help to her
sunshine... love and Hugs
Helen

Dani,

Sorry for the late reply but I am hoping and praying for nothing but the best for your mother (and you, too, of course!).

With Love,

Ed

YEAH!!!!!!!

I am soooooo relieved her PET/CT scan came back clean no cancer!!!! There is only small area where her surgery was that was showing up on the scan that was also on her last PET/CT scan 2 weeks into radiation which is probably nothing of concern.

The only concern now is where the bone is exposed that is somewhat infected so her ENT prescribed really strong antibiotics and on her next visit will shave down the bone because it is irratated and infected right now so he wants to wait to shave it down to make sure the infection heals up. What a relief!

Thank you for all the well wishes. You guys are the BEST!

Love,
Dani

YEA, Dani!!!!!!!! What a huge relief! I am so happy for you!
Judy U

Dani,
I am so very happy for you. I thought about you tons of times today, hoping that you were going to get that "walking on air" feeling after the doctors appointment. I'm glad I got on one last time tonight to see if you had posted yet. Has Danny posted about his first Chemo treatment yet? He has also been on my mind.
Love,
Minnie

Dani,

I am so glad to hear about your mother! YAHOO!! Here, before the do anything with the exposed bone, they do the hypberbaric chamber treatments first and then use an antibiotic drip to treat the infection. Infection in the bone after radiation should require special care. Not knowing any more about your mom than I do, it might not hurt to ask.

Ed

Thanks for all the thoughts and prayers I know they really help. Minnie, you are soooooo sweet! Ed, I suggested the HBO treatments and her ENT said.......that he does not recommend it because he said something about cancer feeding off of oxegen and if by chance (he seriously doubts it) that there is the smallest cancer cell left it may possibly fuel off the oxegen. Does that make sense and has anybody else ever heard that before? And yes he did say that infection in the bone after radiation is very serious and should not be taken lightly. One of the biggest problems shes up against is that she is highly allergic to penicillin, amoxicillin and any antiobiotic with cillin in the name so that limits what he can do to fight the infection. Is this anything that anybody else has been up against. It is now his biggest concern and wants to see her every week to see how she progresses with the antibiotics....

DAni

I have read that somewhere about HBO as well. However, this was on Univ. of Penn's website:
RELATIONSHIP OF HBO TO CANCER:

"To date there is no evidence linking HBO therapy with increased risk of tumor formation. Davis and Hunt in 1988 studied 75 animals treated with HBO and found no increase or progression of tumors in HBO group compared with controls."

There is a phase II clinical trial at UoPenn "...validate the model and assess the efficacy of HB02 therapy for improving outcome. The focus will be to determine the patho-physiological basis for heightened surgical risk among post-radiation head and neck patients and the efficacy of hyperbaric oxygen (HB02) therapy for improving outcome." The study won't be completed until Aug. 2005.

I found it interesting also that at least 2 major CCC's have in house HBO.

Infections are pretty common post Tx because of the low WBC. No infections can be taken lightly but bone infections are probably the more serious. They can lead to Osteoradianecrosis because the capillaries in the bones in the radiated field are compromised and it is harder for the body to fight infections in those areas. There are high powered alternatives to the (peni)cillin classes of antibiotics. Cipro comes to mind. It is good that you are on top of this.

Dani,
I had Hyberbaric Oxygen treatment, 30 of them, to start the process of getting implants in the lower half of my mouth. My doctors told me the same thing that Gary just posted, that there is no proof that HBO "helps" cancer grow. What it did do is make my mouth feel a whole lot better and helped the lymphedema that I still have left on my jaw. If your mother has an infection in her bone I would push her strongly in the direction of Hyperbaric treatment. Maybe showing her doctor some facts on it would help???
Good luck with the decision.
Minnie

There was a story on the news last night about herbal supplements and drug interactions and Cipro was specifically mentioned but I can't remember what supplements were to be avoided. I searched for the story but can't find it.

Ed

I should have mentioned that Cipro is a very powerful antibiotic (if I remember right it was the drug of choice for treating Anthrax). If taking it or anticipating taking it, definitely do the pharmacist consult.

Some herbal supplements are linked to interfering with the efficacy of precription medications, like St. Johns wort. Talk to your pharmacist if you are using supplements with prescription drugs.

Gary,

They did give her Cipro and she hasn't started to take it yet but I am personally very familiar with it because my husband has cronic diverticulis (he has had it since he was 23 doctors are amazed at how young he was when diagnosed and has spent many nights in the hospital once for 10 days straight they thought they were going to have to remove a portion of his colon) They usually give him Cipro, Flagyl and Leviquin and all of those have some nasty side effects for him so I'm going to make sure my mom really gets good information from the pharmacist. She is still finishing out the antibiotics the dentist gave her but they don't seem to killing the infection yet.

I am gathering info on the HBO treatments. I feel better myself today than I have in months because of the scan results. I feel like a huge weight has been lifted. This is the first time in many many months that an appointment and results from her doctors have been positive and I feel so good knowing that she is cancer free at this time! Now we just need to fix this infection because it is causing her a lot of pain and discomfort and eating hasn't been too enjoyable for her yet because everything keeps getting stuck there and then she has to get the food out and it gets more irratated that is why I'm going to really push for those HBO treatments so she can heal up and move forward.

As always thanks for the information. You are all sooo wonderful!

Dani

Hi Dani,
just be aware that there is a really strong likelyhood of thrush from this so keep an eye out for it. You might want to suggest getting some diflucan to have just in case.

They had me on Cipro for an infection and I had a huge thrush bloom.

HBO is expensive and some HMOs and insurers don't want to pay for it unless they're pressed.

Fortunately before my mom was diagnosed with cancer her employer had several different options for insurance and she took the PPO so all of her surgeries and all treatments have been done quickly and with little hesitation on the insurance companies part as to whether or not they will pay. She also bought the short and long term disability from work and was very fortunate to get close to her salary the whole time she was off work.

I will prepare her for the thrush. So far she was lucky to get away without any problems from thrush thus far but I will tell her about it so she can be prepared. I know from how everybody talks about it, it would be something that would frighten her by thinking it was something else.

Thanks again,
Dani

I am so glad to hear short term and long term disability working for someone. I had both and was on the short term for about 3 months when the employer stopped paying (self-funded) and when I filed the long term they told me they made a mistake and should have excluded this cancer when I signed up last September. I told them they sent me a letter and approved me. I am now trying to at least get my premiums paid refunded but they insist the insurance was for anything other than this cancer.

Ed

Hi Dani,
I'm glad you are feeling better and wish your mom could get past this infection. I had no problems getting my insurance company to pay 100% for the HBO treatments as it was deemed medically necessary for the extraction of teeth. With her having bone exposed and an infection, I would imagine it will be approved.
Take care,
Minnie

I tried psoting this yesterday and wound up with a web error so will try again.

There are a whole host of drugs and supplements you need to take at different hours than you take your Cipro, these include things like Calcium which was mentioned on TV, iron, magenesium, antacids, etc. Check the medline website under prescription drugs. http://medlineplus.gov
The list is very lengthy.

Also be aware that now you have adjusted the hours you take your Calcium, etc that this may have an effect on othr drugs you take like synthroid which also isn't supposed to be taken at the same time as calcium. I spent somuch time on Cipro this spring, I wound up going lsightly hyperthyroid because the calcium was no longer interfering with the synthroid.

As for hyperbaric treatment, U of P offered me 2 free treatments before last surgery. I turned them down because I am too claustrophobic and this chamber which seats 8 people looks like a giant oil tank left over from WW II. They would have to drug me get me in it.

Hope this post makes it this time.

Eileen

Dani -- just wanted to say congrats on your mom's negative PET scan... great news indeed...

Dani: Good news on your mother's scans. Doesn't that feeling make you feel about as good as anything in this life? The doctors also seem to be delighted when they get to give patients good news like that. And, of course, we all love positive, good info like this as we get enough of the other kind. Thanks for sharing with us and as always, will be praying for you and mom.

Dani
just to sya am really pleased for you all...
sunshine..love and hugs
Helen

Thank you everybody for your kind responses. I haven't felt this normal for over a year. I feel like I can finally breathe. I'm sure my mom is pretty relieved with all the good reports but she still feels only about 70%. Now to battle this infection....

My mom just switched over to the Cipro and she will see her Chemo doctor today to get some blood tests done. She says that her mouth still hurts which we are sure is related to the infection in the bone. Both her dentist and ENT are closely monitoring her infection to make sure it starts to heal up. If it doesn't heal up her ENT will explore other options as he wants to rule out that it is not cancer that is causing the infection. So we are waiting for the infection to heal and then we will probably look into the HBO treatments because from what I've read they will help a great deal with the way her mouth feels. Out of everything her biggest complaint is the way her mouth feels so completely different than it used to and the pain hasn't helped. She still has to take pain medication orally when it starts to hurt and she is no wimp when it comes to pain. She gave birth to my little brother with absolutely no pain medication and when I tried to go that route once those contractions started coming I was begging for the epidural. So I know that her pain is pretty intense.
Has anybody else experienced this infection in the bone and was it extremely painful? When her ENT ran all the tests for clean margins after her second surgery (which he got all clean margins) he also sent the bone samples out to be tested and they were clean (no cancer). I'm just a little concerned because of the what if's that the ENT and dentist are throwing out there.....

If anybody has any input as always it is greatly appreciated!

Dani

Dani,

I can't give you any insight into the bone infection question, since I didn't experience that. However, on the subject of how different your mom's mouth feels, I can understand that. As you start to wean yourself off of pain medication, you begin to feel more areas that are still recovering. Some of them stay numb for awhile and then gradually develop sensation over a long period of time. Also, there can be tightness where the surgery was done. Finally, you have to get used to using your mouth differently for eating and speaking over the long term, depending on what works best.

It can be a series of major adjustments, but hopefully she's on the way to recovery.

Cathy

Dani-
I'm so happy your mom had such good news. Take heart. Because of your experience with your husband's bouts with diverticulitis, you pretty much know what to expect with thrush and what they do to help avoid/combat it! Diflucan and flagyl (which your hubby had) are essentially the same thing. My Ed (Uptown) had MONTHS of fighting it. Talk about a pain in the butt. Since he's been plagued with issues with his liver, the diflucan had a serious impact on how it functioned as well as his fatigue level (because of the liver not functioning at top speed). I don't want to insite a riot by commenting on an alternative therapy, but our experience was such a nightmare before we found this odd little stuff! We searched for something that would not be so potentially damaging and had the good fortune to find this stuff called three lac. We figured what the heck - it couldn't be any worse - so he tried it. He'd let it disolve (that was a trick because of the xerostomia) in his mouth three times a day and dang, what a miracle - nothing else changed but he's gone two months without the ugly/uncomfortable thrush! WoooHooo!

I pray for all posters on the OCF forum (and our own family) daily. Mostly asking for help in staying grounded and encouraged - despite some pitfalls in treatments and cures as well as our fears. I will say a special prayer for you and your mom tonight.

Thank you for being the kind of daughter every mom wishes they had. One of compassion and commitment to keep fighting for your family and being generous with your time and love to be part of the cure. Blessings to you. Hang tight!

Susan

Thank you Susan,

I just thought the Flagyl was another antibiotic. Our cupboards are filled with Cipro, Flagyl and Leviquin and I don't know what any of them are but just that when my husband takes them its like poison to him. He gets horrible night sweats and he has a really bad reaction to them. I guess they are pretty strong medicines. I feel for you with all the medical problems that Ed is going through. I'm only 35 and my husband is 32 and I swear we are at the emergency room at least once a month for him (not to mention the times he's been hospitalized). The doctors tell him he has the body of a 60 year old (I'm not kidding). He is a Union Heavy Equipment Mechanic so his job doesn't help at all.

So between stressing about my mom and all my husband's medical problems and trying to raise a nine month old and clean the house and work full time I pretty much have my hands full.

You are sooo wonderful! I think that you and Ed are perfect for each other. God Bless you both.

Love,
Dani

Good news,

My mom went to the dentist today and I am going to copy and paste the e-mail I got from her today.....
Hi Honey,

I went to my dentist today and he was very pleased with they way my
mouth is healing. He said the bone that is exposed is dead and he hopes
that it will just fall off soon. He said to just keep taking the pain
medication and that the tissues around the bone look much better than
they did. If it was cancer they would not be getting better so he was
happy. He also said if you get that oxygen treatment that it feeds the
cancer cells and he has been doing this for over 23 years. It is also
very expensive. So he hopes my body will heal itself without those
treatments.

So I am elated and I also ordered that mouthwash for her that Brian posted about so I its gonna be a great 4th of July....

Love to you all,
Dani

Oh Dani! I am so happy for you and your mom! Wonderful news!
Judy U

DaniJams,

It sounds like things are improving for your mother! I am so glad and I sure hope to see at least both of you in Las Vegas.

Ed

Hi Dani
Thanks for the post.. super to know that your Mom's body is fighting back.. she's lucky to have a daughter like you..
Sunshine... love and hugs
Helen