#87194 01-02-2009 03:35 PM | Joined: Jan 2009 Posts: 18 Member | OP  Member
Joined: Jan 2009 Posts: 18 | Hi My name is Magdalena ,i'm 25. I was diagnosed with tongue cancer one year ago,I had radiation and chemo.Now my cancer spread to lung,that's why I am looking for someone with the same problem. I am sorry my english is not so well  | | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hello Magdalena, Sorry to hear of your cancer. There are a few people here with spread to lungs, perhaps they will answer too.
Are you being treated at a major hospital? What are they offering for further treatment?
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Joined: Jan 2008 Posts: 706 | Hi Magdalena, My husband has oral cancer that has spread to his lungs. How can I help you?
Sue
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Magdalena, welcome to OCF. Im sorry to hear of your diagnosis and how young you are. There are several young people on this board who have gone thru oral cancer. You will find lots of support here. Everyone helps each other. Im sure you will find several others who have had a similar diagnosis. Suemarie is very knowledgeable and a wonderful person who can help you.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | Hi Sue and Mark I hope You will understand me:) Ok so,In june 08' I finished my treatment ( I had 30 radiations and 2 chemo-cisplatin and carboplatin) one month after my treatment I had Ct and Pet scan my doctor told me that scans shown something in my left lung,but he didn't know what exactly is in my lung -he told me maybe this is infection-because during my treatment I had really big problem with mucous.So he decided that I will have next ct scan in one month. Next ct scan looked better-I was so happy. unfortunately month ago I had another ct scan and this time my doctor dold me that i will need biopsy because I still have some spots in my lung ang before i had only 3 spots but this time I have 2 more spots.Two days after biopsy I knew results-I have my second spread but this time to my lung. I have 2 cicles chemo.i have chemo once a week ( Erbitux and docetaxel) I was looking for someone with the same problem because everyones tells me wow You was diagnosed with tongue cancer and You have spread to your lung,thats why i felt like I am alone with this situation.I had one doctor I mean I had a lot of doctors who told me You should't have this cancer You are so young ,i am not smoking,not drinking-so why me??? Sue can You tell me about Your husband treatment???
Last edited by Magdalena; 01-02-2009 04:38 PM.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Magdalenam
You can read Suemarie's blog about her husband Neil. Its under OCF cancer blogs and is titled "The Start of the Long Road".
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Aug 2008 Posts: 113 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 113 | Hi Magdalena.....You came to the right place for support. Please know that we will do whatever we can to help you. My husband's cancer spread to his lungs also. He is on Taxol right now and we are hoping and praying that his next CTscan will not show any new growths and that everything will remain stable. Take one day at a time. We all care. Let us know how you are doing. Thoughts are with you. Love, Claudia
Husband 2/3 tongue removed March 2008. Free flap. . Stage IV. Radiation and 3 chemo's (cisplatin,taxol & erbitux). .Pet scan Aug 08 showed mets to lungs .Oct 08, recurrence. - In the arms of Jesus, July 15, 2009
| | | | | Joined: Dec 2008 Posts: 8 Member | | Member
Joined: Dec 2008 Posts: 8 | Hi Magdalena,
I'm only a few years older than you (30), I've not had your specific issue of spreading to the lungs, but I do have cancer of the tongue also.
I was diagnosed on Oct 29th, and had two surgeries in November. I don't smoke or drink either, and am still reeling from the apparently random unfairness of this.
My thoughts will be with you.
Tamara
Diagnised 29th Oct 08 (29 years old): SCC, T2N1 - partial glossectomy (25%); flap construction (twice - first one died); neck dissection 8 nodes removed, 1 node positive; trache - 14 days, partially collapsed lung. No radiation at this time.
| | | | | Joined: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | Thank You For your post.Happy New Year I hope this year will be better than 2008.I hope that this year will bring some new good news:)
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Magdelena
On a practical note,and maybe to answer your origonal question,cancer spreads via the lymphatic system.In your neck you have over a hundred lymph nodes that drain away fluid from your mouth .It just takes one cell from your tongue to get into the lymph glands,for the cancer to move to other parts of the body,and of course the neck and then the lungs are in the direct firing line.Hence so many people have large numbers of lymph nodes removed when they have their origonal surgery.
Did you have the primary site removed surgically?and did you have a neck dissection ? or did you just have radiotherapy and chemo?
This is a problematic development,but you have age on your side,so get all the information you can about your treatment plan,and then come back with any questions that you have.
there are plenty of folks here who will be able to help and advise.
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Welcome to the OCF Magdalena. My husband has metastasis to both lungs. He had radiation and has been on different chemos since Oct. '07. He is 48 so you have quite a bit more youth on your side. Where are you being treated? We are now going to Sloan in NYC. If you have questions, just ask. I'm on the board everyday now.
Sue
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: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | I have my teratment in Center for Advanced center (Lutheran General Hospital -IL) I had I can say 2,5 surgeries First January 08'-they removed this horrible thing from my tongue-one week after this they got results -SCC Next March 08'-I had surgery they removed all tumor from my tongue and they also removed 3 lymph nodes from my neck(negative) After this I've started my radiation in April,but after three radiations i've noticed that somothings wrong is with my neck-I had bump in the same place where they removed my three lyph nodes.I had bipsy,my doctor thought that this is fluid from my last surgery,but It was SCC.So I had my third surgery in May 08'-radical neck dissection.After this they put in PEG tube and next day (05.22.08) I had my first radiation and first chemo.I finished my treatment in June 08' In November 08' I had pet scan and after this bipsy.My doctor told me that I have secon spread this time in my left lung. 12.05.2008 I've started my 2 cycles chemo ( Erbitux and docetaxel) yesterday i had my fifth chemo ,three more and I will have ct scan-so wish me good luck:) | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | How are the side effects from the chemo? Are you very sick? My husband's scans didn't show the spread to the lungs right away either. That all showed up during his second surgery. The lung stuff started on the outside of the lung and then invaded it. Good luck to you-I'll be praying for you.
Sue
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: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | After my first, chemo,I've got infection on my head-but they gave me special shampoo and antibiotic so now is really very good my head looks much much better stoped iching. I have also rash on my neck and chest I mean in one week I have rash on my neck next week i have on my arms. I can have rash all that stuff but my horrible side effect is pain in my mouth,some sores- sometimes I have big pain in my mouth so I have problem with eating.My lips are swollen and my cheek.I ask my nurse why I have this side effect I should't have but she told me that I have my radiation few months ago so It's normal.
I have my good and bad days,sometimes I feel weak and tired and on the next week I have a lot of energy.I can say that I feel not so bad.Suemarie I'm also prayinf for your husband,I am sorry that he is so sick. I also feel fear because I have 3 chemos left,and then I will have my ct scan and really I would like to hear that my cancer is shrinking-but who knows.Like I said I have only 25 years and so many things to do,I don't want to hear that they can't help me.But come one I have to keep thinking positive that everything will be ok:) | | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Magdalena, Yes you are young to have this kind of trouble! Oral cancer (squamous cell carcinoma) does sometimes spread to other locations, the lungs are one of them. Are they considering surgery? What hospital are you being treated at? I can understand you just fine!
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | Lutheran General Hospital IL (Center for Advanced Care)
Surgery??No this time just chemo. | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Magdalena,
I am also young (29) and was diagnosed with T1 SSC the right side of my tongue. It seemed from one of your posts a doctor seemed surprised that the cancer spead to the lung. From my experiemce it is not uncommon. They found a nodule on my right lung during a PET scan. So far they say it's nothing (too small to biopsy)
There are some other threads on the forum about "who" gets oral cancer. There are lots of us here that do not smoke or drink heavily and yet we have OC. It's no fun but there are so many people here who can help. Knowing you are not alone is a huge support.
Always feel free to ask any questions. We are here to help and support each other as much as possible.
Suzanne
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | Hi Magdalena, My case fits the description you are searching for. I am currently being treated for my second recurrence, which is in my lungs on both sides. It's not operable and they can't do radiation. I'm about to do my 4th 3-week cycle of chemo (Carboplatin, Erbitux, and 5-FU). My inital DX was in March of 2006, a tumor on the right side of my tongue and base of the tongue. I did radiation and chemo. I had a recurrence in July 07 with a cervical lymph node positive for SCC. I had a right side radical neck dissection and then another full round of IMRT radiation. In October 2008 it was discovered (I was having lung pain) that now I have a number of tumors in my lungs. It's not operable and radiation is not an option due to the number and location of the tumors. I'm 'only' 41 (I think that's fairly young anyhow). So I think my case is similar to what you were searching for. Feel free to shoot me a private message or reply however you feel comfortable. -Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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Joined: Dec 2008 Posts: 16 | Mark - is the mediastinum a common place for the SCC to spread? My husband has a larger tumor in the mediastinum than the one at the primary site, BOT. Can't find anyone with as advanced stage as his.....T2N2bM1, grade 2, infiltrating moderately differentiated cells. Doctor says his is aggressive, inoperable and uncurable, due to the distant metastasis in the chest area. Do you have any input on his situation or anyone that might have? Thanks, Brenda S
Last edited by 12thofnever; 01-25-2009 01:58 PM.
CG to H, 68 yr male, DX 10/27/08 w/BOT, Grade 2, T4/N2/M1 (neck, lung, midsternum) stage 4C/inoperable & incurable at this point as it is considered systemic. Dec 08 - Feb 09 had 7 treatments of chemo (taxol & carboplatin). 9/10/09 DX w/recurrence, MRI on 9/17/09. I STILL FEEL & LOOK GREAT :-)
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Brenda, The lymph chains from the neck generally end up in the mediastinum. Spread to to this area is known to happen and presents a serious development. Because of the concentration of critical blood vessels, lymphatic vessels, esophagus, and the cardiac and phrenic nerves, surgery options in this area are very limited. Radiation as also an unlikely option due to the potential for very serious side effects. I wish I could tell you something different. I am sorry that I can't come up with any options to add for you.
I will add that we should never loose hope, because miracles can happen. Embrace love, family, hope, faith, and spend time together. Those things are really all we have, whether we think our time is short or not.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | There is a woman thoracic surgeon at Memorial Sloan Kettering that does surgery on these. It is not something that many attempt, since the area is where all the major arteries from your heart are located, and the slightest misstep is a catastrophic event. I don't have her name, but it could be chased down. That combined with RFA for the lung issues, might buy time, or reduce things to a point where other measures MIGHT be effective.
Many here might remember Glenn, who had this same progression. He tried all of this. In the end it bought him enough time to see his daughter get into college. I know from many conversations with him on the phone over a year, how difficult all of this was physically and emotionally. It is not a path for everyone. Glenn was a particularly tough and stoic man, a NY cop that was probably one of the toughest men I have ever known. When he had mets to his kidney he had it removed and lived on one. Mets to his liver were caught early and he had surgery to resect them. He never once bitched to me about the physical discomfort, and he didn't know the meaning of the words - give in. Eventually his progression was beyond these stop gap efforts. These are tough choices. In the end they may not produce the results that you wish. I am only posting this here for your consideration as you view the big picture.
I might also add that there are CT guided biopsy techniques to confirm that those chest nodes are actually malignant, again a dangerous procedure, but I can't count the times that people have been told that they have chest mets, to find out that the nodes are hot in a PET scan from something other than cancer.
Last edited by Brian Hill; 01-25-2009 08:29 PM. Reason: added last paragraph
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: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Hello all,
I have a question about metastasis to the lungs which I hope to be able to attribute to nothing more than hypersensitivity.
On Monday of this week while exercising I noticed that my lungs hurt a little when I was breathing heavy. Throughout the week I continue to notice a soreness/tightness in my lungs. It is possible that I could be coming down with a cold or something but I do not have any other symptoms.
I ended up calling my Oncologist today and left a message for the nurse practicioner but feel a little silly. A one year post treatment PET CT is scheduled for 5/5/09.
What do you guys think? Can you find out that you have metastasis to the lungs in this manner or am I freaking myself out over nothing?
It is nice to be able to come to the board and ask about my fears whether they turn out to be founded or not. Thanks for being there.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Hey Frank,
There is nothing to feel silly about, we suffer from a cellular disease that has a nasty habit of hiding from treatment.
As I started recovery I developed some swelling around the ear on the same side that I had the big node removed from.
Messing with it for a couple of days I finally decide to go to the next doctor in the follow up rotation a couple of weeks early, my ENT.
It turns out that I had a blockage, umm can you say EAR WAX?
Probably nothing, could be something, its worth a quick trip to the Docs to be sure.
Jogging behind a diesel delivery truck sucking up fumes? [{;-)
Be well,
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | | 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 | When was the last time your lungs were scanned? They did mine three times within a year post Tx. The first 2 had "areas that could not be excluded" and the last thankfully was all clear. With all the crap going around this flu season it may just be a bug or a pulled muscle from exercise. Sometimes I think I do more harm to my body exercising than good. But you're correct about contacting your doctors. It's never good to put anything off with our history.
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.
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Joined: Mar 2006 Posts: 114 | Frank I almost hate to reply because I don't want to scare you with my answer, but yes it 'can' come about that way. I'm currently in treatment for lung mets which was discovered eventually after I experienced intermittent pain in my lungs (such as with deep breathing) over a period of several months. When I first experienced it (around June/July '08) they did an x-ray which didn't show anything. Finally it seemed to get worse and they sent me for a PET/CT in October, which revealed the mets to the lungs.
I hope and pray in your case the issue will be something else, but my case should at least serve to support what others have said, which is to definitely get it checked out.
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I agree with what the others are saying. It's never silly to have something checked out. We know our bodies and if something doesn't seem right it's always a good idea to go to the doctor.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 253 | At the Head and Neck Support group I attended this week, there were 2 people that had gotten spots on there lung after treatment. Neither for cancer. However, I would definitely not wait to have it checked out.
Sandy
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
OCF member/supporter
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Joined: Mar 2008 Posts: 67 | Hello all,
Thanks for the replies. Went skiing with my daughter for the weekend but before departing, at the advice of my Oncologist's nurse practicioner, I scheduled a lung x-ray for
Tuesday morning through my PCP. If it shows anything I will then follow up with my Stanford Oncologist.
I have my one year post treatment PET/CT scheduled for May 5th at Stanford. Given Steve J's response I wonder if I should push to have the PET/CT done much sooner. Any thoughts?
In the mean time, I will let you know about the X-ray.
Thanks
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | David,
When you say your lungs were scanned 3 times within a year post TX, what does that mean? Did you have 3 PET/CT's done within a year?
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | All,
The x-ray today showed all clear with no pulmonary nodules. Thanks for your support.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Magdalena,
Sorry to have jumped in to your thread with my issue. How are you doing?
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | 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 |
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That is wonderful news. Thanks for sharing!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Great news! Good to hear!
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | i'm doing ok,thank you for asking.On friday I will have my 12 chemo,but so far i'am doing ok-i mean one week is really ok,but for example this week is very bad beacuse i have nausea and this horrible taste in my mouth.. but that's ok since my doctor told me that my cancer is shrinking i don't care I can feel bad-I want to be healthy again.
How are You Frank? | | | | | Joined: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | Hi Magdalena, I'm so happy to hear the cancer is shrinking. I'm sorry you are having to go through this and I pray you get better soon. Hugs, Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Magdelena,
That is great news!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Mar 2008 Posts: 67 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2008 Posts: 67 | Magdalena,
I am happy and grateful to be alive! Despite the occasional bouts of fear my life is very full and I feel fortunate to have recovered from treatment as well as I have.
Hang in there. Thank God the cancer is shrinking. I remember my brother, who is a doctor, telling me during my treatment that as bad as I felt the cancer was doing worse. The side effects of the treatments we endure are brutal but it does kill the cancer. It seems that you are having the same sort of feelings.
Thanks again for temporarily letting me hijack your thread. I will include you in my prayers for continued cancer shrinkage.
Frank
SCC Right Tonsil Dx 2/25/2008 at age 43
T1N2B M0,Stage IVa
8mm primary removed 3/5/08
4cm lymph node removed 2/22/08
2 additional sub cm nodes
Tx at Stanford: 30 x IMRT, 2 x Cisplatin,
Started radiation 3/27/08, Completed 5/7/08
p16+, HPV 16+
2 Year Post-TX PET CT 5/10 - CLEAR
| | | | | 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 | Magdalena,
As bad as you feel you must stay on top of your daily hydration and calorie intake needs. Find some antinausea meds that works or believe me you will feel even worse.
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: Jan 2009 Posts: 18 Member | | OP Member
Joined: Jan 2009 Posts: 18 | I need help,what can I take when I have this bad taste in my mouth-someone told me about sugar free candies or something ginger taste.One more maybe someone can give me some tips when I have nausea I can't eat even when I take one bite of bread I feel like i will throw up.My family is really angry at me,thay even yell at me I understand them but what can I do??? | | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | you need anti-nausea medication
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Talk to your doctors and get anti-nausea drugs that will work for you. And tell your family that anger is just about the worst thing they can do for you right now. If they don't listen, have your medical team speak to them. Anger is just not acceptable.
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | [quote=Magdalena]...when I have nausea I can't eat even when I take one bite of bread I feel like i will throw up.My family is really angry at me,thay even yell at me I understand them but what can I do??? [/quote]
Throw up in someone's lap or on the table and they will quickly get the idea you are serious. Bread's is kinda dry, and filling, and doesn't have much in the way of calories so why eat it anyway? This is where the Ensure Plus, VHC, Scandi-Shakes, and home-made hi-cal shakes come into play.
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: 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 | It got to the point that I would chug a can of VHC and close my eyes and hold my mouth shut while standing over the sink until the urge to throw up passed. You have got to find something that works for you or you will make matters far worse than you think they are right now. Your body needs water and fuel to carry on normal daily functions and that need is greatly increased when it is under stress and attack. That's why we say a minimum of 48 ozs of water and 3000 cals of food each and every day. That should be your goal and VHC with it's 560 cals can help when pain and nausea are your enemies. I counted the hours that I was normally awake and knew that I needed 6 cans of VHC and 6 eight oz cups of water so basically each hour I would alternate between VHC and water. If I felt perky I would sometimes rarely down 2 just so I could take a break later in the day if I needed to. Hey I didn't always meet this goal but it was my plan every day.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hopefully he has a tape worm!!! seriously though I hope the figure it out soon. Hugs - and make noise...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | So sorry. This sounds quite scary. Please keep in touch.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Yes - please do keep in touch. My son had a "spot" on his lung that turned out to be scar tissue from a bout with pneumonia and he's fine, now.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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