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#958 04-04-2003 09:42 AM
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Rosie,

Are you back from Hopkins with Heather? If you feel like it can you update us on her progress and the results of the consult.

I hope it was informative and postive???

Thinking of you both,
Dinah

#959 04-04-2003 12:59 PM
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Hi Dinah,

Yes, we're back and it was very informative, but not very positive. I only have a minute as I need to get back to the hospital. Heather was admitted again today. If her insurance would have authorized it, she would have been admitted to Hopkins yesterday. They were appalled at her condition. said she is too weak to start chemo, but hopefully they will start next week.

Inquiring about clinical trials was a total waste because they won't take anyone in her poor condition, plus they won't take anyone with an open wound and she still has the two under her chin. Seems like some of the docs up here would have known that and saved us the trip. I am so mad at myself for even suggesting we go for a second opinion. She could have started chemo last week and been that much farther along. Found out I wasn't giving her near enough laxatives. And being constipated was causing her digestive system to back up, which is why she kept going downhill on the eating, which led to dehydration. A new doc at the hospital today said she should have been on a prescription laxative. Colace, milk of magnesia, senekot, none of these were enough. How was I supposed to know this? I just gave her what the docs said.

I saw a post by a new member from Pittsburgh, I think, about being bitter and angry at the "professionals" who didn't treat him in a proper and timely manner. Amen to that! I don't think I could be more bitter and angry than I am right now. And part of that anger is directed to myself. But at least I have the excuse that I am not a health professional. I wonder what their excuse is?

Anyway, the bottom line is that if they can get her stabilized, they will start chemo in a few days. Chemo will supposedly give her a 40% chance of shrinking the tumor and giving her a year or maybe two. So, if she's one of the lucky ones, we'll have her here for a little while yet. If chemo fails, I'm going to a nutritional expert and to hell with the mainstream professionals.

I saw your question about the sugar. I've been wondering about that myself. Supposedly, sugar feeds cancer? I think that is part of how a PET scan works. It shows up lots of sugar activity, which denotes cancer? I know that is too simple an explanation, but it does have something to do with sugar. I'm wondering now why all the nutritional supplements Heather has been given, and most of you too I would guess, have a high amount of sugar. And, in her case, taste has nothing to do with it, since everything goes in her PEG tube. Taste doesn't matter.

Well, I have to get back to the hospital. More later.

Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#960 04-04-2003 03:53 PM
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The avenue that you are discussing regarding sugar and cancer is not correct and is a function of extrapolating one idea into something that it is not. It is much too detailed for this post, but consumption of sugar has nothing to do with anything. If it were, those individuals who are eating whole Sara Lee cheesecakes to keep the weight on would be in big trouble... A PET scan finds cells that are metabolizing / burning energy at an increased rate. This is a known characteristic of cancer cells. Metabolism is a function of glucose consumption at a cellular level. This is because cancer cells divide rather rapidly, hence the higher sugar burn. (Not sugar as in the packet you put in your coffee) If the scan finds some group of cells that are metabolizing glucose faster than surrounding cells, that makes them suspect to be cancer cells. PET scans are not a definitive diagnosis for cancer, but they give someone a good idea where (anatomically) they should be doing a biopsy to find out what's what.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#961 04-04-2003 07:07 PM
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Rosie, Rosie, do not beat up on yourself! You are one smart and tough woman, who has earned the respect and admiration of everyone who has read your posts. There is nothing you could reasonably have known to do differently, and what is done is done. Please take strength from the many people here, posters and readers, who are sending prayers and positive energy and good wishes to you and to Heather in your fight.
Joanna

#962 04-05-2003 08:14 AM
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Rosie,

I second everything Joanna has said. You are not the expert at this anymore than any of us are. We all make choices based on what we read and try to learn as we go through this. And above all we do what we think is best.

I don't think there are any of us that haven't at one time said "why didn't they tell me that?" And it makes us all angry. Thank goodness we have this place to vent. It would upset our loved ones too much to always vent to them.

You and Heather sound as if you are ready to take this next challenge head on, and God bless you!!

Dinah

#963 04-11-2003 03:56 PM
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Hi all,

I don't really feel much like posting, but I guess you all deserve an update. You've all been so supportive. I sort of hate to even post this because it is so depressing, But I guess we all know that everyone here won't be one of the "lucky ones". There is still some hope for Heather, but it diminishes a little more each day.

I don't remember if I mentioned it before or not, but Heather was having quite a bit of pain in her neck, left shoulder and arm. She was discharged from the hospital March 26th and the pain started about that same time. At first it just seemed like a sore muscle. When it got worse, they suspected the tumor might be pressing on a nerve. When it got to the point that she could barely move her arm, one of the docs finally called in a neurologist and he ordered an MRI.

The MRI showed that the cancer has moved to her spine and has already destroyed her 5th vertebrae. The neurosurgeon wanted to operate, but that would have meant postponing chemo, which had already been postponed way too long. They did start the chemo, but feel she can only handle one dose per week, instead of the 5 days every 3 weeks regimen that is usually done. They want to try more RAD even though they have admitted the previous RAD was basically useless.

Having surgery would alleviate the pain and sort of "fix" the spine, but would do nothing to halt the cancer in the rest of her body. The RAD might stop the tumor in her spine, but carries the risk of paralysis. Of course, the surgery has that risk, too. Doing nothing is definite paralysis. Doing chemo is a crap shoot and probably won't work fast enough to save the spine even if it does eventually get the rest of the cancer.

Talk about being between a rock and a hard place. How does one decide the best course of action?
Chances of a remission are slim to none, but they aren't even sure what would be the best palliative treatment at this point. Although they haven't used that term yet, it's easy to tell what they really think. Yes, the chemo might kill some of the cancer, but it is apparently jumping around at the speed of light. Just 3 weeks ago, a bone scan was negative for cancer. Now her 5th vertebrae is gone. Talk about moving fast. It could be anywhere in her body by now.

I won't be posting much anymore because Heather's sister and I are taking turns at the hospital. Someone is with her 24 hours a day. She has a tracheostomy and it is getting very hard for her to cough up all the secretions. She sometimes feels like she can't breathe and she is afraid to be alone. Her pain is so bad she is on a morphine drip of 45 mg an hour with a 2 mg bolus shot every 2 hours if she needs it, which she usually does. frown She's lucky if she gets 2 hours of sleep at a time. She sleeps leaning forward and sort of doubled over to alleviate some of the pain and pressure in her neck, but then the swelling in her face increases.

Someone finally listened to our complaints about the PEG tube not working (she hasn't used it successfully for more than a week and used it very little for at least a week before that). After 3 doctors checked it, a resident finally figured out what was wrong mad and it needs to be replaced. Her stomach never really accepted it and has been treating it as a foreign body (which it is!) and has, they think, grown epithelial cells (basically a skin) over it on the inside. That's why it has been leaking around the tube. The fluid goes down the tube, hits the bubble of skin that has formed and comes right back out. (Brian, I know that is probably not technically correct, but it is a simple way to understand it. Maybe you could explain it better if you feel it necessary.)

I also think she might have cachexia. I read that 40% of cancer patients die from malnutrition and cachexia. Pretty bleak odds.

I'm sorry this post is so long. I just had to get some of this off my chest. And, I would like to say again that even though generally she has had good doctors, there is no substitute for being treated at a major cancer center. . No matter how good a surgeon is, he is after all only a surgeon, not an oncologist. And, even though her doctors did consult one another sometimes, they did not work in tandem. Too many things were missed because she wasn't being seen by the right doctor at the right time.

I truly hope all of you are spared the ordeal that Heather has had. I wouldn't wish this on my worst enemy. And I wish I knew how to explain this to her daughter. She knows her mommy has been sick for a long time, but how do you prepare a 6 year old for the loss of her mother? The RAD oncology nurse today gave me a pamphlet about "Kid's Konnected". Anyone have any knowledge of them?

Thanks for all your support,
Rainbows & hugs to all of you, wink
Rosie


Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
#964 04-11-2003 07:14 PM
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Rosie,
My heart goes out to you...I am in tears for you and your family...I have a 7 year old son...I don't know what I would say...It is UNFAIR...we don't always know why...but there must be a meaning a reason...I pray someday we will know.

Peace be with you and remember love is all.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
#965 04-12-2003 05:40 AM
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Rosie,
I've been praying for you, Heather and your granddaugter all along, and my prayers will continue. My heart goes out to you and what you have to face, and I am so sorry that words can't even begin to express my true feelings. This whole situation is so unfair!!!
There is a kid's konnected group at my hospital, and from what the social workers tell me it's a really good experience for the children. It gives them a place to be with kids who have gone through similar situations and feelings. I think it would be a good place for you granddaughter. You also should look into a support group for yourself and the rest of your family. The online group is great, but sometimes you need to see people face to face and feel loving hugs.

I wish you and your family all of the strength and love that you'll need to get through this trial. You all are in my prayers, and I will pass this along to the rest of my family so they can pray for you as well. I'm sending you hugs!


I survived because I kept hope alive!!! Live, laugh, love and keep fighting hard.
Jeanette
Stage 3 oral cancer...over 60% of tongue and all lymph nodes on right side removed...July 2002.
Chemo and Radiation...ended September 2002.
#966 04-12-2003 07:45 AM
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Rosie, There are no words that can be expressed to tell you how sorry I am about Heather's condition. I wish I knew what to say that could bring you some comfort and hope. I can only tell you that Heather and your family will be in my thoughts and prayers. It is good that you or someone in the family is always with Heather, since I believe it is this love that is keeping her going day to day. May God bless you all.


DonnaJean
#967 04-12-2003 02:09 PM
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Rosie,
I too am at a loss for words. To say this is unfair is to put it mildly. The only fair thing is that Heather and your grandaughter have your love and from what I've seen some don't have that. May God give you the strength you need to keep going on and a special place for you and your's in his heart.
Diane

#968 04-12-2003 07:20 PM
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Rosie,
Don't beat yourself up too much on the constipation thing. The books hardly address it, no one likes to talk about it, yet I used to run into people in the hospital who told me it was one of the most difficult things to manage. I too am having problems with it, still, even though I am over three weeks past treatment. It has caused me to lose even more weight and I am sure is impeding my healing process. I actually did pretty well while I was actually being treated. This thing seems to cycle weekly now and I end up vomiting and not being able to eat or drink (or keep medication down) for several days at a time - not to mention dehydration. Not a pretty picture. I have done much experimenting with the laxatives and have not found a way to reach equilibrium. Once my diet has expanded to include fruits and vegetables (they're way to acidic and burn too much right now)I am sure that things will improve, not to mention getting off of the pain meds which play a big role in this. Those in OCF who haven't had problems with it are very fortunate indeed. I have followed your and Heathers plight closely and you will both be in my prayers every day.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
#969 04-13-2003 03:40 PM
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Rosie:

We have no magic to send your way but most certainly wish we had a special wand to take away the pain you and Heather and your family are feeling.

We can say that despite your inability to post frequently because you will be where you are most needed, your friends here at OCF will hold you close in our hearts and share this excrutiating time with you in spirit.

You have been an example to all of us with the depth of your love as a mother and your willingness to advocate for the comfort and dignity of your daughter.Know that your aren't walking alone...

Sending a hug,

Kim & Dave


*Stage III Right Tonsillar Ca. *Diagnosed Aug. 2002
*Surgery Sept.,Radiation Dec. 2002
*For everything else there's Mastercard.
#970 04-13-2003 06:29 PM
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Dear Rosie,
I hope you can feel how sorry I am that you are going through this. To imagine seeing one of my babies endure this monster is more than I can do. My husband is fighting it, but he has also had a full life. Not to say that one life is more important than another, but at least he has experienced a lot more of this world. I'm sorry....I'm not getting my thoughts across too clearly. Just please know that there are people here who love you. Are proud of you. And only hope that they can be as strong as you, if need be.
God Bless You,
Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#971 04-14-2003 04:41 AM
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Rosie, The American Cancer Socitiey has a great Kids Konnected program. I was diagnosed when our son, Sam, was only 13. So yes, I was concerned about his ability to process all that had happened to our family after my big surgery, treatment and then long recovery. I didn't want to make a big deal of the situation by immediately putting him in counseling for fear he would think he did something wrong. KIds Konnect gave him a voice, helped him journal his most private thoughts and most importantly hooked him up with other kids going through the same thing. He wasn't happy going to the first meeting, but I gotta say, after that first meeting Sam was hooked and looked forward to those Tuesday and Thursday night meetings. The American Cancer Society has many good programs available so make sure you check them out.

Both you and Heather will continue to be in my thoughts ......

Sincerely,
Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
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