| Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | Hi Lisa,
Reading your post sure brought back a ton of memories for me. I found this board right after my husband's treatment ended and the people on this board are wonderful! You will get a ton of support and encouragement. Just take it one day at a time. I don't think you're weak at all to get a prescription for your nerves, I think that's smart!
Your husband is young and strong, that's going to help him a lot. You just make sure you take care of yourself too, being a caregiver can be very draining. And you have 2 children too. Are there any family members close by to be able to help? Keep us posted, we are all here for you.
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Lisa - You weren't weak but SMART to get something to help YOU get through this.
There are awesome people on this site who will help you through this difficult journey.
Good luck!
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Lisa. Glad they found the primary. Your husband's diagnosis sounds so much like my husbands'. Continue to post and ask any and all questions. You are not weak in getting something to help you with your nerves. My choice was Luna di Luna - Pinot Grigio . I started a personal diary that I typed in a word document which help me greatly deal with my emotions and keeping a record of everything as it happened. You and you husband WILL get through this.
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Lisa, First of all you are not weak. I had to get one some medication to help me get through. I too felt like it was for th weak, but noe realize if I did not have it I would not be out of bed walking around enjoying life as much as I can. I too understand having to be strong for kids as I too have young ones. It doesn't hurt sometimes to let them know you are worried and scared so that they too ca feel safe knowing that they are not the only ones worried and scared. Your kids will be fine through all this and so will you and your husband. Sorry that you had to join us, but glad you are here. rant and rave all you need to.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 71 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jan 2009 Posts: 71 | Lisa, i'm from the san antonio area too and had a similar diagnosis as your husband. Your diagnosis to treatment time looks to be extremely fast compared to most of us. I found my lump in october of '08, diagnosed 11/11 and treatment started in mid-december - nearly 60 days.
I checked out MD Anderson, but chose to use CTRC in San Antonio because it is also a CCC.
As far as anxiety goes, my wife and i both were taking zanax from the day of diagnosis until the first day of treatment. When we felt like we were fighting back the anxiety seemed to subside.
Your husband, like me, is lucky to have a fighter like you on his side. I don't know how i could have got through it without my wife there for me. I, like your husband, quit surfing for answers once i got the diagnosis. My wife kept looking and would only tell me the good stuff. I found this site during my treatment by searching for "oral cancer survivors" to avoid any bad stats.
I PMed you my phone number if you want to talk about my san antonio experience i would be more than happy to tell you whatever i can to help.
57 @ Dx, Stg IV BOT (1.5cm), lymph nodes (lrgst 2.5cm), non-smoker, casual drinker and exercise nut, Cisplatin x 2, Erbetux w/IMRT x 35/70Gy, PEG, Treated in San Antonio @ CTRC 12/16/08-1/27/09. 3/5/09-CT 6/12/09-PET, PEG out 12/1/09-CT 12/6/10-PET 12-8/11-CT 1-4/13-CT (all clean) | | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | Lisa - As the patient, whose husband was the caregiver, I know he hurt with me and he had his bad times too. I can say that it wasn't disouraging for me to see him having a hard time too. I knew he was human too and it hurt him to see me hurt. So, my advice is to be strong, but let him know you appreciate his struggle and it is okay to cry with him. Misery loves company sometimes. I know I did. But then you pick it up and trudge forward. I will be forever grateful for his wonderful care of me.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Lisa,
You have just been placed on one of the hardest paths in life to walk...you are entitled to cry, to not know what's happening, to feel afraid...terrified even. You're not expected to run when you are first learning to walk. Bravery is doing what needs to be done in spite of fear, not in the absence of it.
Women amaze me, because they are capable of such strength...Carmen said it best...be strong. And the times you are not, draw strength and comfort from those of us that have traveled the path you are on now.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jan 2010 Posts: 24 Member | OP Member Joined: Jan 2010 Posts: 24 | Ok - so MD Anderson and City of Hope agree 4 rounds, maybe 5 of a cocktail of Taxol, Carboplatin, Ifosfamoide is the deal. Have been told to have 6 thermometers in hand becasue I'll lose them and have 3 people in place for night call runs as we will probably be running to the ER and I'll need someone for the kids. So - that's all in place. What can I do now to make my husband comfortable - certain kind of chair? What can I know in advance to make him the most comfortable. Still saying OK lets wake up!
Lisaj, caregiver to Ken age 45 at DX, non smoker, social drinker, athlete Stage IV SCC BOT, bilateral lymph involvement DX 01/08/2010 Taxol, Cisplatin, IFEX Treatment completed 6/2010 - all clear | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Lisa,
I think your ready. Your presence is what is going to bring him the most comfort,that and the kids. As patients this is ultimately what we endure the treatments for. I scheduled my treatments early so we could drop my son off at school every morning on the way in. He liked dad coming along in the mornings.
I did not do chemo so others here will need to help there. Are you scheduled for radiation?
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Lisa
If Radiation is contemplated, here is my newest obsessive advice: [quote] Insist on a TSH level blood test for his thyroid so you have a pre-TX baseline on what is normal for your husband. Radiation very often damages the thyroid and leaves the patient cold and weak yet because there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 or the most advanced ones in tune with the 21st Century, 3.0 as the highest acceptable level, it is very very hard to get a doctor to prescribe thyroid medication without pre TX baseline. I am a personal example since before TX, I had a TSH of 1.6 and after TX it shot up to 4.3 but no doctor would help me these last two years until I discovered blood tests done by a cardiologist that I got the results from the day after finding out I had cancer so I had paid no attention to the 1.6 TSH. With that, I have finally been started on one little pill that my endocrinologist thinks will bring back both energy and warmth. I hope you never need the results of this pre TX test, but get one if your husband does not have a TSH level and is going to get radiation.[/quote] Finally, the couch was very very comfortable with two LARGE pillows propped up against the ends so I could recline and still sit up enough not to choke on mucous. Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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