Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Joined: Apr 2007
Posts: 794
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Apr 2007
Posts: 794
Hello Tamara,
Reading your post made my heart ache for you and everyone who is going through this with you, Kyle and your children. I will continue to keep you in my prayers. I can't imagine the depth of fear and heartache you certainly must be feeling. We lost Eddie's dad this past spring to small cell lung cancer, the hospice team that came in were wonderful as they took care of him and made him as pain free as possible. I recall that they wouldn't answer his children's questions as to what to expect exactly, I think because everyone is different that is a tough question to answer. I believe your "family" here at the OCF will answer you honestly through all of their own experiences. I think I read above someone saying that here at the OCF you are never alone, I found that to be very true last year going through my mom's tx's.
I hope that you find some of the answers you are seeking. I think, well, I know I would be very much like you. I would need to know what to expect. Don't be afraid to share with the team Kyle has answers/suggestions you will find in reading posts from here. They are very valuable, anything that gives us hope is worth a try. I hope you find peace.
Much love,
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
Joined: May 2008
Posts: 24
KyleS Offline OP
Member
OP Offline
Member

Joined: May 2008
Posts: 24
Hello,
My husband woke up Saturday night and could not breath. He ended up at our local hospital with a traech (he was scheduled for one at UCLA but did not make it to the appt. date). The hospital here is convinced he has an infection too and have him on iv antibiotics. My husband has had yucky fistula's breaking through his skin on the outside and last week one broke inside just above his voicebox. This fluid makes him sick. I'm upset because I do not think anyone will be able to do anything about this drainage. I do not want my husband to be nauseated for the next few months and then the cancer starts to hurt. He feels good now except for this tummy problems. This just does not seem fair. I'm trying to reach our UCLA Dr. and have letters and medical records ready to go off to two other hospitals. I'm feeling like I can't do things quick enough and it's upsetting. Thanks for your comments.


Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Joined: Aug 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 716
I'm sorry for you and your family enduring this pain. I had to deal with Hospice three or four times and I cannot say enough good things about them. They can and will help. I'm sorry...I don't know what else to say....


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Joined: Apr 2005
Posts: 2,676
JAM Offline
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,676
Dear Tamara,
Please take advantage of the support offered here. If only for the hugs and strength we can send you. I, too, will talk to you any time by private message or phone. You have to be really strong now - be aggressive with the Docs and Hospice about pain control-- that's you job -- and be with him every step of the way. One caveat-- YOU must find time to rest. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
Joined: May 2008
Posts: 24
KyleS Offline OP
Member
OP Offline
Member

Joined: May 2008
Posts: 24
Thank you all for your posts and the private messages. I know this was not an easy question to write an answer too. My husband felt pretty good once we got him home. I'm not sure if it's the fact he's off the antibiotics now (and the infection is still here) or just the tumor, but he keeps feeling nauseated. He's on meds for that but I worry the cycle of being sick will come again. Thank you all for everything. This site is a great help.
Sincerely,
Tamara


Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Joined: Nov 2008
Posts: 10
Member
Offline
Member

Joined: Nov 2008
Posts: 10
Hello Tamara,
I am new to this site so have just read these posts. I am like you in that I want to know the things that may happen so I will be better prepared.
I agree with others that Hospice is just wonderful. It must be especially hard dealing with these issues and being there for you children as well as your husband. It is so important that you find time to get proper rest and also time to just get out by yourself. Some may feel that is selfish but in reality you will be a far better caregiver when you take time for yourself. If you don't have a close family support system (I am blessed that way) take advantage of those Hospice volenteers.
My grandson, 11 yr is very close to his PA. I highly recommend two books by Maria Sheriver: What is Heaven? and What's the matter with Grandpa. The 2nd book was more to have him understand the alzheimer's that he has in addtion to the cancer. Please let me know how things are going with your family.
Emma


Emma: husband age 77 with SCC and Alzheimer's. Having no treatment.
Joined: Jan 2008
Posts: 706
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Jan 2008
Posts: 706
Ladies-please remember to take time for yourselves. I find this to be difficult and then I get overwhelmed and lose it. I don't mean that you have to go out but just sit and breathe or take a hot bath. I sometimes will try to go to my mom's just to chat if I know one of our teenagers will be home. This site is great to come to just to read and connect with others in the same situation. It reenforces the fact that others have been where we are now and they've come through. Sending out strength and hope to you.

Last edited by suemarie; 12-09-2008 05:10 PM.

cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
In a former life, my mother-in-law had Alzheimer's Disease, and we did what we could to ease the load on my father-in-law. He finally got into a support group, found he wasn't alone and learned a lot.

One MUST take time for oneself in these situations; caregiving is sometimes like holding your breath, where the longer you do it the worse it gets...


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: May 2008
Posts: 24
KyleS Offline OP
Member
OP Offline
Member

Joined: May 2008
Posts: 24
Thank you all. It's hard to find time for myself between the little ones and my husband. He tends to like me helping him the best but understands when I need a little break. His brother is coming down tonight to stay for 2 weeks so I'm very happy about that. He keeps going up and down on his nausea. We just can't seem to figure out what is causing it and what helps it. I feel at this point that I know as much as the Dr's do. My husband gets upset because they all just want to throw new drugs at him and no one wants to discover the problem. Now, the local Oncologist is referring us to an "infectious disease Dr" to help answer the question. Does he or does he not have an infection still and maybe they will have an idea about the cause of the nausea. There are just so many Dr's involved now. They are going to try and get us in if they get a cancellation.
I better get back upstairs. Thank you all for your advice. The book sounds good. My daughter has asked about Heaven before when my mom passed away from cancer. I do not look forward to those conversations. I'm trying to just go day to day. I'm sorry everyone on this board has experienced this cancer in some way. It's such a nightmare.
Love, Tammy


Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
Joined: Nov 2005
Posts: 1,128
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Nov 2005
Posts: 1,128
Little kids are surprisingly pragmatic about this stuf because they don't really understand except maybe how it will affect them personally -- Don't sweat talking to your daughter; instead, view it as an opportunity for a heart-to-heart and an opportunity to educate her.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Page 2 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5