| | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | I knew that I should have refused surgery. This is due to all the Potential complications that are amplified in my being HIV/+. My platelets were so low going into this. They assured me that they would have blood and platlets on the ready for me. Well that's all fine and good. But what about bleeding after the fact. They took my left tonsil. And with all the pressure from lymph and fibrosis along with my low clotting factor no wonder I bleed. and now that I am running out of options. all I really want is to be healed so I don't have this blood problem looming over me all the time. In fact at this point I would like to be taking care of bucket list stuff. But I am afraid to move. I never had any symptoms that could be attributed to SCC. Where as treatment, Namely surgery to remove cancer from the neck, has just about killed me. I cant open my mouth I have a hard time swallowing. I am so tiered all the time now. I am almost sure that I am aspirating food and liquids into my lungs, and fear that phenomia is going to be next. I could be enjoying what time I had left. Doing things like eating and going dancing and Disneyland. I have been living with Hiv for over 20 years. And who would have thought that I would get cancer and have it cause me more problems in a little over a year than Hiv ever gave me in all of those 20+ years. I could be taking care of my final arrangements. Which Now that my husband and I are afforded the same rights as any married couple in CA. These would have been a lot easier to deal with. Didn't my Doctors think about the increased bleeding potential that I have due to my chronically low Platelets that are a crucial part of the healing process. If a could just get on the other side of this potential bleeding I will not let them cut me again. I should have listened to my gut when it told me that surgery was going to be a huge problem. I think I would just opt. for the palative care if I had it all to do over again. I am not giving up!(I know it seems that way). It is just so scary and depressing. Thank you for allowing me to get this off my chest. shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Vent away. It saddens me to hear the situation you are facing, and I can imagine the frustration. I go there too..."I can be living better days if only"
I'm so glad to see the end result of your vent is that you are not giving up, that sounds like the you I've seen here. Praying for better days Shawn.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Thank you Nancy, and I hope radiation is not so hard on you. I will pray for you as well. I found out about a study involving patients with HIV/AIDS and HPV+ cancer of the tonsil. So now I have something to research. which will help me in coping.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Please do keep me posted. And thanks ....
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | Hi Shawn. This does totally 100% suck! I'm so sorry to hear all the complications you have had with the surgery. I know some of the message board members have also had the major bleeds after the tonsil removal.
Keep on fighting the fight! Hang in there and hopefully things will get better. Feelings are feelings and you certainly are entitled to yours. I'm sure you are not the only one who wishes they could have a "do-over".
I lost my mom 6 years ago to pancreatic cancer. She was diagnosed "early" and had the whipple surgery at Johns Hopkins. It did buy her 3 years but I wouldn't say they were enjoyable years.
We all do at the time what we think is the right thing to do with the information we have. Hugs, Wanda
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
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