#86222 12-16-2008 03:18 PM | Joined: Dec 2008 Posts: 3 Member | OP  Member
Joined: Dec 2008 Posts: 3 | The patient is my 85-year-old mother who had surgery in 2000 for tongue and neck tumors. it was followed by radiation and all was successful until a recurrence in 2005. She refused the suggested radical surgery-removal of part of the lower jaw and had minimal scraping and hoping. By 2006 there was further recurrence but she refused further surgery. This was right after Erbitux was approved for oral cancer and we tried that. It was amazingly successful in reducing tumors and in fact by summer of 2008 she was tumor free. there were side effects from the meds, however, including skin and eye irritation, tiredness, dizzyness, nail and hair breakage, sores--life issue effects as opposed to severe incapacitation. The doctor took her off the meds for a break and she felt better, but the tumor returned and she is back on the drug. Symptoms have arisen again-skin and eye irritation, tiredness, etc. We are looking for any suggestions about relief from these side effects and also side effects from the original radiation. her most significant complaint is accumulation of phlegm that she cannot get down or get up. this is probably due to not having any saliva. she has tried various artificial salivas in the past but none has really helped her. Thank you for any assistance that can be offered here. Best, Marsha | | | | | 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 | Some here have gotten a suction machine for home use.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Dec 2008 Posts: 3 Member | | OP Member
Joined: Dec 2008 Posts: 3 | thank you for the quick reply. does anyone know the name of the suction machine? are there different ones? better or worse?
I so appreciate your taking the time to write back to me. | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Marsha, I didn't need one but many here have and hopefully they will help you. I'm sure his oncologists can help you as well. This was a recent thread on the same topic: http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=84658
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | I have actually seen medical suction machines ( various brands) for sale on ebay.... if you think this is for you worth a look. Be really careful we these, the reason some doctors don't like patients to use them is the damaged tissues in the mouth are really delicate, and you can actually do damage with a suction machine if you are not careful. But lots of people here have used them without issue.
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: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I rented one from Apria Healthcare and this was set up for me before I was discharged from the hospital - so I'm not sure of the whole process. I don't remember how much it cost each month but I'm sure there are other places to get them from. I didn't have any issues with mine and it was a lifesaver at some points - I was best friends with my suction machine in the hospital. It also helped with the mucus from radiation (although toward the end I became really good at just hacking it all up!).
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | I have a portable one from Apria Healthcare and it is covered by insurance. Runs somewhere between $25-40 a month. I think Medicare will cover the purchase of one which is around $400-$500. You will need to get a script from your doctor. You would want a portable one so she could take it with her if she wanted. The free standing ones are huge and cover an entire end table. I unfortunately did not have this when I had the mucous, but think it sure would have been a great help.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,676 | Marsha, Hi, I have been off line for a little while, but read the above tonite. I have a very good suction machine that I would be happy to loan you for however long your Mom might need it. It worked wonders for my husband [same issues your Mom has} and another OCF member has used it to good relief. You can call me at 870-257-4625 or 870-856-5455 to talk about it and I will be glad to UPS it to you. My hubby was also on Erbitux for an extended period and we dealt with many of the side effects your MOm is expweiencing. Erbitux is a challange to handle! Let me know if I can help you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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| | | | | 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 Marsha, Some of the symptoms you describe are similar to those caused by diminished thyroid output. Do you know if your mother has been tested regularly for thyroid hormone levels? Thyroid problems are quite common after radiation and are common amongst older people.
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: Nov 2008 Posts: 2 Member | | Member
Joined: Nov 2008 Posts: 2 | I am glad to hear about Erbitux.....I had radaition, 7 weeks and Erbitux, 7 treatements and still feel bad.....tired, can't eat and loosing weight but still no signs of tumors! so far | | |
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