Hi Brenda,
That is way quick to have a PET. Just a forewarning....don't freak if it lights up. Kevin's lit up with inflammation and it was 5 months out of tx.
So glad you are back with us!!!
Kathy

Wow! You were right. All the doctors ( surgeon, radiologist and onconlogist) looked concerned because swelling prevented too much from showing up. Oh! I was wrong, it was a CT scan, ot PET. Also, I have lots of swelling on the neck where the lympnodes were removed. Doctors think it is Lympedema. Prescribed a steroid and an antibiotic. Day three the swelling seems to be reduced. But surgeon wants to see me again as soon as possible (the earliet is Tuesday May 29th) today is the 24th. because he is not sure of the cause of the swelling. Now I am quite concerned and have to wait....
Stressed and fearful! How can this be? After surgery, chemo (Erbitux) and radiation for 6 weeks! All this pain for what? Help! How do you cope? I trust and believe in God but it does not make it easier.

It could very well be the swelling - perhaps some lymphatic massage? And if you're still healing it does take a while not to light up, inflammation, and infection an cause a scan to light up, and a neck to swell... Hopefully it's nothing serious. Did they radiate your neck as well? They cooked me on both sides.

It is now September 8th and I am very much improved. Greatful to be alive and on the road to recovery and looking like my "old" self. I have found that each specialist has their own interest and purpose as well as oncern and they will not always recommend holistic approaches like manual lymphatic message ans scar message therapy teamed with exercise. I must let everyone know these have helped my healing substantially! The manual lymphatic message first done by a physical therapist supplemented by me per their direction has substantially reduced and in places eliminated swelling in face and neck! The scar message has broken up the scar tissue I'm my neck where it is barely visible and my left arm (which was used to reconstruct my tongue)! Hard to believe but it really works. Because radiation effects can appear even 5-10 years later doing these techniques myself is a rest of life requirement because I value the quality of range of motion of my neck, arms, mouth and throat. I recommend, if you can, see about PT and/OT within 3-6 months following surgery and radiation. Waiting allows muscle and scar tissue to harden creating a sort of atrophy ( I see other patients with it who have not received therapy on my check ups). Remember, use it or lee it is relevant even after treatment for this horrible life-threatening condition. It seems the surgeon (for whom I am forever greatful), the oncologist and radiologist are mostly concerned with survival and/or reoccurance not reconditioning after they are done with their miraculous work. Respectful of their contributions and totally understand. However, each of us must take care of recovery which includes healthy eating, and as suggested lymphatic message and exercise. Hope this held others.

Acupuncture is great too, helps return blod flow to the areas that have been cooked. I've done physio and lymphatic massage, since 3 weeks post treatment. Good luck

I would not classify either lymphatic massage or scar massage therapy or exercise as holistic if that's meant to include nonconventional or alternative medicine. Those used in conjunction with recognized medical standards in the Tx of oral cancer can be most beneficial.

Understood! You are right about that. Since those involved in my conventional care were not really supportive about even PT etc, I extended holistic to those because they were not surgery, chemo or rad. Those professionals of mine said believe that you just give the body time and all will be well in 5 years. That is not true! From this site and others as well as looking at their "long term" patients indicate that the side effects such as fibrosis, stiffness, swelling, impact to range of motion to name a few will get worse without other alternatives beside just waiting. However you are technically correct. Professional and self lymphatic message and scar message are hardly holistic.

Brenda I am glad to hear that you are doing better, I have severe lymphedema and see my PT once a week for lymph channel massage. She has ordered a compression garment for me. I don't know how bad your lymphedema is but thought I would mention it. I too preform the massages at home. But seeing my PT is a treat because she seems to do it so much better than I. My Neck dissection being preformed on irradiated skin and only a few months between Rads. and surgery is what I think is the main reason that I have developed severe fibrosis that started at the insision site. And My PT works for Kaiser. So agreed about this treatment that in my opinion lymphatic massage is slowing the progression of both fibrosis and lymphedema. These conditions are progressing in me. You mentioned steroids. No one on my team recommended it. How helpful was it to you Brenda? I don't know where your at with the Erbitux rash, But my MO did recommend traditional acne treatment for it. Oxy max. action face wash did wonders and very quickly at that. I am not a dr. And I know that your team did not recommend this treatment. Just to let you know what worked really well for me with no side effects. But is very drying so I only leave it on for half the time it recommends. Its only been about a month since my (unsuccessful) surgery. And do hope that this at least stops where it is, even if there is no improvement going forward. I am glad that your situation is not as advanced and aggressive as mine. Just wanted to reinforce what you already seem to understand about these conditions. And I apologize because I just realized that I kinda hijacked your thread. But again glad that you can see the light at the end of this tunnel of hell! Sincerely Shawn U.