#43699 08-12-2004 04:08 PM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2004 Posts: 30 | Update on Kim:
We went to see the Chemo specialist today. He is a very nice and compassionate doctor. Kim seemed to like him. My mom made sure to stress to him that Kim wants him to listen to her when she feels that something is wrong and act on it, which none of her other doctors did. He agreed and seemed really shocked by what my mother said about the other doctors.
Kim gained 6 pounds since last week - yeah! AND she was finally given a prescription for an anti-depressant! I personally feel that she should have been given this at the very beginning. The petscan confirmed that she does have cancer in her throat, neck, and flap on her tongue. Apparently, when she had her lymph nodes removed, they didn't remove all of them. We were all very stunned by this since her doctor did not say he was only taking out the infected ones. It's very disappointing. Anyways, they also said that they saw something around her lungs, but they weren't sure that it was cancer. It was shocking and he didn't go into it too much. Kim's oncologist will discuss the petscan with her in more detail at her appointment next week. However, the chemo will treat the whole body unlike radiation which focuses on a specific part.
The doctor wants to start her on a first round of single dosage chemo that will last 6-8 weeks. He would like to begin next week since her cancer is so aggressive and he doesn't want to wait for it to get worse. According to the doctor, the first round of chemo will have some side effects, but they can be controlled such as nausea, vomitting, fatigue, and mouth sores. She will not lose her hair in this first round. he also said that she will have new scans every 2 weeks to see what progress the chemo is making. Hopefully it will make tremendous progress. He said that he can't guarantee anything, and the chemo will not get rid of the cancer, but it might give her more time. How much was not said, but more time is good. I'm praying for a miracle. Third time's a charm right?
Kim agreed to try the first round of chemo, but if she doesn't like it, she will quit. I told her that if she does lose her hair, I will cut mine short (I can't shave it because of my profession), and my brother and husband said they would shave theirs too. Kim has so much support from everyone. I only wish that God would answer our prayers and rid her of this as well as everyone else out there.
Although we should not think that God planned for her to have this terrible burden because of her strength, it is better for her to think that than think she is being punished by God. She was feeling that way for a very long time. My mom believes that God has a plan for everyone and that this is all part of his plan, but we can't figur out why. I hope that doesn't offend anyone's beliefs. We are just trying to instill some positive perspective into Kim.
Please keep her in your prayers as she continues to battle and ventures into chemo. I'm praying that the road ahead of her isn't too tough.
God Bless
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
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#43700 08-13-2004 01:08 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Dear AMK,
Thanks for the update -- I hope and pray that she will see some improvement from her next round of treatment, and that you and your family will have the strength you need right now.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#43701 08-13-2004 08:29 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | AMK,
I am encouraged to hear Kim is feeling a little bit better about her current doctor. I am so sorry all of you have to go through such a difficult time. I am praying for God to direct the medical team to the absolute best possible treatment plan and comfort and peace to Kim and all of you.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
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#43702 08-13-2004 08:57 AM | Joined: Feb 2004 Posts: 162 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Feb 2004 Posts: 162 | AMK,
The fact that Kim has gained weight is a very good thing. I take this as very good news given the nature of the challanges she's enduring. The anti-depressants should be helpful as well.
I had chemo as part of my treatment and I can categorically state that it was a much, much easier ride for me than the radiation.
While Kim is getting her chemo therapy, I would encourage you to research clinic trial possibilities for her.
My very best wishes...
-Brett
Base of Tongue SCC. Stage IV, T1N2bM0. Diagnosed 25 July 2003. Treated with 6 weeks induction chemo -- Taxol & Carboplatin once a week followed with 30 fractions IMRT, 10 fields per fraction over 6 more weeks. Recurrence October 2005.
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#43703 08-13-2004 09:09 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 156 | AMK - I'm crying b/c I'm SOO happy Kim's going to try chemo. And that's WONDERFUL that you're all cutting/shaving your hair. Remember - you can get a wig too  !!! The girls in my support group had AWESOME ones! I was so jealous b/c they looked SOO perfect!! AND they didn't have to do their hair in the morning, no "bad hair" days, no shaving - there are some definite pluses to chemo!! OH! And they also swore by EMEND )(drug) for nausea! Those girls said little presents really helped them. They'd come home from the chemo treatment and a little something would be on their bed - a bracelet, bath salts, cds, whatever. One girl was in the hospital for a week, and she was given a present for each day to open. It's sounds so trivial - you don't have to spend a lot of money - but it really does make a difference. You could see, too, if she's be willing to sign up for for chemoangels.com (note to others, you don't have to be going through chemo to utilize this). An "angel" would "adopt" her and send her little gifts and cards through treatment. Those same girls did that, and it helped raise their spirits each package. Thank you so much for keeping us posted. Good news or otherwise, we definitely want to know how she's doing. Sending Love, Sabrina | | |
#43704 08-13-2004 03:56 PM | Joined: Aug 2004 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Aug 2004 Posts: 30 | Again, all your prayers and thoughts are greatly appreciated. Kim didn't have a good day today. Her face is starting to swell from the tumors and she is in a lot of pain. She is getting migraines often and she can only take Tylenol (which doesn't do much) to help relieve the pain.
We are happy that she is trying chemo. I just wish that we could find some way to raise her hopes and give her some optimism. She has just started taking an anti-depressant so hopefully that will help.
Her chemo specialist would like her start treatment next week, but she has to have her pain controlled before she begins. Right now her pain is a 9 out of 10. The pain doctor is really worthless as far as I'm concerned.
I am signing her up at chemoangel.com. Sabrina, thank you for the info. My mom asked her and Kim nodded yes that she would like try it.
Brett I'm not sure what you mean about clinic trial possibilities. Could you elaborate for me as this is all very new to me.
Today, I also had more than 10 inches of my hair cut to donate to the Cancer Society for wigs. I figure that any little bit that I can contribute is a good thing.
Well, I will keep you all posted as she has several appointments next week and then chemo begins.
Sister of Kim, a 24 year old cancer fighter diagnosed on 12/5/04, who fought strong and hard and died with dignity and honor on 1/3/05.
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#43705 08-13-2004 04:07 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Dear AMK, I am praying for you, Kim, and your entire family. I agree with your mom that God has a purpose for each of us. Not to say that I understand at all that my husband is battling cancer, but I am daily asking God for healing and also strength, courage and wisdom to be what I need to be in all of this...I can say that God has been with me thru the crying and fear. I have felt lonely, but never really alone. I feel that He is hearing me, feeling my pain and walking beside Dan and I in this journey. I read somewhere to try and not worry about tomorrow because it does not belong to us, but to God. Makes great sense to me. Take care and God bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#43706 08-13-2004 05:31 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | amk -- what kind of chemo is your sis having? I'm currently going through chemo and radiation treatments, using Cisplatin as the chemo drug. I had all these fears of side effects going in as well, but I've yet to get sick or anything so far (i've had two infusions -- the second one was Tuesday)... Basically, it takes my stomach for a queasy ride for 2-3 days (whereby food doesn't look or smell at all appealing to me), then I slowly return to normal...
Glad to hear she is giving chemo a go... you both are in my thoughts and prayers... I'm 33, a little older than your sis, but can identify with fighting this "young."
I don't know all the theology behind cancer and God, but I do know that God promises to never leave us nor forsake us, and that He loves us much more than we can ever ask or imagine (even though our circumstances sometimes don't reflect that)... I've taken great comfort in that over these past months and such...
Eric
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#43707 08-14-2004 08:50 AM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Hello, amk. God bless you for working so hard on your sister's behalf. I, too, cannot imagine dealing with something like this at such an early age. Although I know much better, I had bouts of concern that things that I had done in MY life were the cause of my husband's illness. Silly, and stupid, I know, but rationality goes right out the window in the face of fear, does it not? How far are you from Johns Hopkins in Baltimore? They have the #1 Head and Neck Oncology dept in the US as I understand it. Had we not been so comfortable with the oncologists at UVA, we'd have been happy to drive the extra distance to use Johns Hopkins' team. I believe they have residential places to stay so you could avoid traveling. I know it is hard to away from home during an illness, but finding/utilizing the best medical care available is worth the disruption. We live about 2 hours away from UVA and once Tom begins daily radiation/chemo, we've elected to stay near the hospital. I may commute to work a few days a week, and let the cancer center volunteers take Tom to treatments, if I feel he'd be comfortable doing that.
With all the other prayers, believe that ours will be included. If I may, I'll send you a private post with a prayer we say daily. God bless you and your family. Nicki
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#43708 08-14-2004 01:20 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Nicki (and others who travel long distance for radiation) -- not sure if this is available where you are, but the American Cancer Society in Arizona has been putting my wife and I up in hotels during radiation weeks.
My radiation is in Phoenix, about 100 miles from home. Especially on chemo weeks, I just can't make the trips back and forth every day.
My radiation oncologist nurse set it up for us, through the ACS. They've put us in some pretty nice places, even a resort in Tempe one week. Might be worth looking into where you are. I know there is NO WAY we could have afforded paying for hotels over 7 straight weeks...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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