| Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Hello, Our family is enjoying the break from Doctor appointments and tests. We find out the PET scan results on Wednesday. We have talked to several oral cancer survivors in the past few days, they are giving us a little hope. My sister works at a pharmacy and today they had a temporary pharmacist who is a OC survivor who had large tumors in his mouth similar to my dads and 13 lymph nodes removed in 2001. He called my dad and told him his story including some of the painful treatments but was proof that it can be done.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | Joined: Feb 2008 Posts: 341 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Feb 2008 Posts: 341 | Good to hear your dad got to talk to an actual survivor. How is the family getting along? What did yall decided to tell your dad? I've thought about you alot the past couple of days and prayed for your strenght as you support your father.
Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO) Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer, TX IMRT 39x, cisplatin 7x (completed 5/1/08), PEG (4/22 - 7/9), No port. Currently in remission!
| | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Thank you. We are only telling dad positive things, if he wanted to, he could go online and look this up, I'm glad he does not, it's overwhelming. I remember when my husband had lymphoma I never told him anything negative. I basically lied for the six months that he was in treatment. If he knew all the side effects of the chemo drugs, he would have been terrified. So far the siblings are treading lightly on the subject of dad. Until we here the plan from the ENT, we are not saying much of anything and we all trying to absorb all this information. Thank you for your prayers, yesterday I brought dad some Holy water from Lourdes, so far I have shared it with several friends and family members who needed blessings.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Hello all, The PET scan shows cancer in the cheek (3cm), throat(4cm) and a few small nodes in the lungs. He was very confident that radiation and chemo would handle the situation. Can this type of cancer be eliminated without surgery? I was not there with them at the appointment so I have a thousand questions. The ENT did tell them that chemo and radiation would not be easy and their days would be full of appointments. My mom is just so glad to have a bit of good news. Yesterday, I could hear the desperation in her voice.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 61 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 61 | You have to consider all options. Radiation and chemo are the primary tools, but if all else has not resolved the issue more tools have to be added. At this point I would want to know what the doctors feel his options are. Clearly in all these locations, surgery alone will not resolve things. It is possible that a change in chemo might help the lungs, but what works there does not always work in other areas. If their prognosis is dire, and I hope it is not, it may be time to look at clinical trial drugs and options.
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. | | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Can anyone tell me why the doctors are choosing not to do surgery? I will not be meeting the ENT so unless I pressure my siblings to ask these questions, I will not know and can only speculate. I think the tumors are to large. Are there fast growing SCC tumors? I understand that no one here is a medical doctor and cannot give advice, I,m just wondering from anyone's personal experience.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | My only experience has been that I had 2 suspected nodes in my neck and they found a small primary at the base of my tongue. I had 3 previous cancer docs tell me that they wanted to do a RDN or a PND but Moffitt said no surgery before concurrent rad/chemo but maybe afterwards. Their reason to me was that the rad should kill the cancer and they saw no benefit to postponing the killing treatment while I healed from surgery.
As far as the spots in the lungs, my MO once told me that if I developed any they would try another round of chemo before surgery was considered and it would also depend upon their location in my lungs.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 61 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 61 | The use of surgery is always balanced with the compromise in quality of life that it will cause. Base of tongue cancers for instance are never treated with surgery except in extreme cases, as the ability to swallow, speak and more are compromised forever.
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. | | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Hello and thank you for answering some of my questions. My parents went to the oncologist today, they want to do a biopsy on the lungs to make sure they know what they are fighting. The CT scan shows four small spots on three of the lobes. They will be starting chemo shortly after that. A combo of three; taxoline, cisplatin and 5FU. The Doc was very straight forward with my dad and told him this will be very hard on him. (He also has diabetes) He will be in the hospital for five days for the first infusion. My brother did not like her bedside manner and felt all this information was to much for dad who broke down pretty hard after that appointment.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
| | | | Joined: Apr 2008 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Apr 2008 Posts: 26 | Hello, The radiologist-oncologist decided not to do any radiation on my dad at this time. From what I understand, they just want to get some type of hold on the metastasizing cancer cells and see if he responds to chemo. I think the areas in his mouth are just to large. The doctor could not look any of my family members in the eyes.
Daughter of father (71) who has SCC in cheek, hyoid bone and lungs. 3 X paclitaxol and carboplatin every 21 days.
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