#57903 03-03-2006 03:27 AM | Joined: Dec 2005 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2005 Posts: 31 | Leon has finally finished radiation. His last treatment was last Friday. Boy was that a great feeling for the both of us. There were many times I thought he wasn't going to complete the treatments, but he did and I am so proud of him. On the day of his last treatment it felt like there should be a band playing and a bunch of people standing there clapping as he exited the building (smile). Well here goes some new issues now. I thought he would be a lot happier than he is. He seems to have good days and bad days. He said he knows he is done his treatments but with this illness you are really never cured like you are with other illnesses. It will always be hanging over his head. Will this feeling pass for him? I don't want him to be sad the rest of his life. Also, when did any of you get just a glimmer of taste? That's seems to be his other big issue. I keep thinking if his taste comes back at least that may cheer him up. Again thanks for listening to me. Any suggestions would be more than helpful!
Rhonda - Caregiver to husband Leon. Diagnosed with SCC of right tonsil, 1 lymph node. Right tonsilectomy 10/3/05 - Right neck dissectomy 10/12/05, completed 39 IMRT treatments 2/23/06.
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#57904 03-03-2006 05:44 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Rhonda; All you can do is cross the T's and dot the I's. You have accomplished that, if a recurrence develops it simply happens, but it doesn't happen because something was done or not done in the initial approach to treatment. Your husband is correct, you may be CANCER free, but you are never free from CANCER. As a rule, seven year survivors are considered cured. But honestly, there is no cure, you are in remission from disease. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#57905 03-03-2006 07:09 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Rhonda,
Recovery from this disease can be a slow process -- both physically and mentally. The effects of radiation tend to linger for a long time, but hopefully your husband will be able to see improvement bit by bit.
For me, it took quite awhile, but the taste buds came back in stages until finally (after a matter of several months), they were pretty much back to normal. Even though I had conventional radiation, not IMRT, I still have been able to get back a surprising amount of salivary function and enjoy almost any kind of food. Within a few months after my treatment ended, I was back to a full work schedule again and also able to enjoy travel.
It takes time, but I think many of us found that we got to the point where we didn't wake up every day thinking about cancer. The first few followup visits with doctors can sometimes be nerve-wracking, but if you get through those with clear results, you start to see a trend in the right direction -- and then hopefully you can begin to work on making the most of the "new normal".
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#57906 03-03-2006 08:46 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Dec 2003 Posts: 116 | Time is the healer. I feel worse the 2 weeks after radiation than during. Then things got better and I felt stronger, my taste came back mostly, its a little diminished. In 3 mos was about 80% with everthing ( exept the taste and saliva) and once hit a year I'm back to normal except for the taste and saliva.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#57907 03-03-2006 12:41 PM | Joined: Feb 2006 Posts: 22 Member | Member Joined: Feb 2006 Posts: 22 | Hi Rhonda! Congrats on the finished treatments. There was no big band playing when my husband finished his treatments 3 months ago either. There were a few hugs, hand shakes and "good lucks" but other than that the day passed quietly.
I expected the feeling to be different also. I even wrote a similar post to yours, asking if I was just being a drama queen because I was not instantly "back to normal." Although Jimmy and I both still struggle from time to time; have good days and bad, we are mentally and physically doing better today than we were 3 months ago. In hind sight, I probably expected too much too fast.
Like Darrell said above: You may be cancer free, but you are never free from cancer. Someone else once posted something to the effect that we have to learn to make peace with the fear of the unknown. That may be easier said than done, but something each of us have to do.
Three months removed from treatment, my husband has some of his taste back but not all. He is eating pretty well on his own. Chicken, pork, and some of the dryer meats are still hard for him to swallow. He has no tollerance for dairy products and still has to drink a lot because he hasn't gotten any saliva back yet. But, his energy level is improving. Leon will improve with time also.
Hang in there, give it a little time, take it day to day, and let the healing process begin. Know that you have tons of support here at the forum.
Hugs, Vickie
Caregiver to husband, Jimmy, Dx 7/05 Stage IV SCC, metastic to right cervical lymph nodes. Occult Primary; Radiation x38; Chemo: Carboplatin & Taxol, 12 weekly treatments. Last treatment 11/21/05. Mets to Tongue/Partial Glossectomy 5/06.
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#57908 03-03-2006 05:07 PM | Joined: Jan 2006 Posts: 107 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2006 Posts: 107 | hello again Rhonda, I am 11 weeks out of radiation and about 75% of my taste has come back, I still have a hard time tasting salt and since I had cancer in the right tonsil also me and leon probably were radiated close to the same spot and taste buds that taste salt are on the sodes of the tongue, I had my peg tube removed about three weeks ago and I am eating most everything however I also avoid the drier meats like pork and chicken, I eat lots of salads and fish and steak cooked on the rare side seems to work well, I still have some difficulty swallowing , but I have been told by my surgeon that is from internal scar tissue from neck dissection, I must make sure things are cut small and well chewed, chewing is sometimes a problem because my teeth are often sore, but I was fortunate and did not have to have any pulled before I began treatment. All in all my doctors think that i am ahead of the curve with my recovery and hopefully leon will be lucky in his recovery, I will say that the 2-3 weeks after radiation ended were really rough but hang in there it does get better, still have the dry mouth issue in a major way at night when trying to sleep but saliva glands seem to be improving. You must understand also that functioning saliva glads are also tied into fully functioning taste buds, the two seemingly seperate functions are in fact very related to one another. all of that being said I must say things are better every day and my main complaints are effects of surgery, numbness, stiff and tight neck and some swallowing issues, those too I hope will continue to improve. Rhonda best of luck to you and Leon just keep pushing ahead with no looking back. Just try to keep things in perspective with healing, you must think in terms of months and not weeks. Good luck. lenny | | |
#57909 03-03-2006 05:53 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Rhonda, The real fear seems to surface after we are done with treatments. During treatments, we feel empowered, feel like we are doing something to battle this cancer. Once treatments end, we feel a bit helpless. Give it some time, it will improve. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#57910 03-03-2006 08:16 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Rhonda, Actually it's five years (the 7 year number is for companies willing to give former cancer patients life insurance) but 85% of recurrences (IF they are going to occur) at the original tumor site occur within the first 2 years, the first year being the highest percentage.
He is actually hitting the bottom both physically and emotionally right now. The radiation side effects carry on for about a month or so and depression is also very common. The immune system is trashed and opportunistic infections like thrush must be dealt with. It can also be a letdown because he is no longer actively fighting the disease (like Minnie mentioned). Progress in the early stages of recovery are measured in three week increments - it just take a LOT of patience).
I promise you it will get better with time. My first year was a little scary but I don't even think about it much now. I was so beat up I practically crawled out of the building.
My taste buds started recovering in about a month and took a good part of a year for total recovery. Salt was first, sweets were last.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#57911 03-06-2006 05:46 AM | Joined: Dec 2005 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2005 Posts: 31 | Thank you everyone for your responses. Leon already seems a little bit better. He has a little more energy, seems a little stronger, still no taste. He had his first doctor's appointment with the RO on Friday - 1 week out from his last rad. The doctor scoped him and said everything looked smooth and vocal chords and muscles were working normally. He doesn't have to see him again until April 7th. The RO said at that time he will schedule a CT and PET Scan. Does that seem a little soon for the scans? Again, thank you for the help.
Rhonda - Caregiver to husband Leon. Diagnosed with SCC of right tonsil, 1 lymph node. Right tonsilectomy 10/3/05 - Right neck dissectomy 10/12/05, completed 39 IMRT treatments 2/23/06.
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#57912 03-07-2006 09:10 AM | Joined: Oct 2005 Posts: 1 Member | Member Joined: Oct 2005 Posts: 1 | THE FIRST CAT AND PET AR USUALLY GIVEN BETWEEN 8 AND 12 WEEKS AFTER TREATMENT WITH 12 BEING MORE DESIRABLE. AS EVERYONE SAID, THINGS REALLY DO GET BETTER. EVERY PERSON'S BODY RESPONDS ACCORDING TO IT'S ABILITY TO HEAL. TASTE BUDS RETURN AT A DIFFERENT RATE FOR EVERYONE. MOST WILL TELL YOU 6 MONTHS TO A YEAR IS ABOUT NORMAL. TOMORROW IS PROMISED TO NO ONE. TRY TO FIND PLEASURE AND JOY IN WHAT YOU HAVE COMPLETED TOGETHER ALREADY. HAVE FAITH ,,STAY POSITIVE. MY PRAYERS ARE WITH YOU. | | |
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