| Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | So Dave rang the gong today. Pretty exciting. Not sure if that is a ritual everywhere but at Sloan it marks the end of radiation.So happy he doesn't have to lay on that table anymore!!!
I know everyone is different but can folks give me a heads up on what the next few weeks might look like(I'm guessing asking him to build an addition on the house next weekend is out...). And any helpful hints for whatever may be coming his way so I can help him feel more comfortable. Right now, the worse things seem to be mucous,pain and very low energy. His energy really crashed the last few days. When does that start to slowly turn generally?
It is amazing how many helpful hints he has used from this forum. In fact, we turned the dietician at Sloan on to Juven as a product after I read about it here. She wasn't familiar with it. We explained we found out about it here and it helped others as well as Dave so then she decided to also recommend to some patients there.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | 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 | Susan, it will take 2 - 3 weeks before he starts to slowly feel better. Unfortunately its a very long process, 2 steps forward and 1 step back are the norm at this point. Right now Dave may sleep alot which is normal. His body needs lots of rest and keep those calories and water levels high. To heal he will need 3000+ calories per day for a long time. After about a month post tx he should see a big difference. It will only get better and better from here on out. Congrats on finishing treatments!!!! Let the healing begin 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: 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 | Susan,
I preference this with we all can react differently but for many, me included, the few weeks post Tx are our worst. I actually ended up taking a 2 day vacation in the hospital during my 2nd week post Tx. I was not drinking enough water or calories and I became so dehydrated that my wife, bless her heart, made me go, kicking and screaming (well writing very loudly on my pad) until they got my chemistry back in order. Sometime in my 3rd week post I walked out of my tunnel and it was so nice to begin to think I was going to live despite this barbaric treatment.
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: Feb 2010 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | Good timing on the replies. Thanks. He is sleeping so much,it started to worry me. But it sounds like that might be around for the next few weeks. I expected the pain (from the radiation still working) but thought the fatigue would improve quicker after treatment ended. No,huh? He's also on thrush meds. Does that increase fatigue as well?
The other thing that has really increased(or I should say decreased) is his voice. He is so hoarse. Is that "normal."(Honestly,I will never feel the same about that word again). How long does that one "usually" last?
Last edited by SusanW; 05-15-2010 08:06 PM.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | I lost my voice completely for about 4 weeks. I suggest a bike horn for geting CG attention. LOL. For me, the steady decline the last two weeks of radiation were just reversed the first two weeks post radiation as I climbed back out of the dark. By the end of one month post tx my energy level was very good. Still took naps but was able to go a lot and do a lot. My respect goes out to you care givers.......you have your hands and hearts full. I love my husband so much more for his diligent, kind and loving care of me during the entire time.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Susan, Wonderful for both of you to be finished!
As Christine and David have said, calories and fluids are most important. I would add that in my husband's case his pain increased due to gagging from thick mucous buildup. Adequate pain management was essential. Sleep was his main activity for a few weeks, with one short walk (1-2 blocks) per day. He slept almost upright in a recliner.
A small tip - post tx there was a time when he wanted to rinse with the baking soda/salt solution but could not because it caused him to gag. One of the nurses suggested trying to warm up the solution slightly and that did the trick. It was a big relief to him at the time. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | 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 | Re the fatigue and I'll add weakness. Being a person who was in excellent aerobic shape and perhaps not used to being sick this Tx left me physically weak as a new born kitten for months post Tx. Mentally I was very determined to return to my normal and I'm sure that helped but my body just took a long time to get it's strength back. I will also add that even though I was consuming appx 3000 cals each and every day post Tx I didn't gain a pound until my 2nd year of recovery so looking back it tells me there was a lot of "behind the scenes" activity related to recovering for my Tx.
Again, there is no specific calendar that he can compare his recovery to so it's important for him and you to understand that he will recovery when and how he will. With that said I doubt it will be quick or complete.
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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | For me the 2-3 weeks after treatment ended were all about sleep. I walked the dog a few blocks every day (in winter) and tried to get at least two hours of work in at my home office and that was about as active as I could get. It was after about three weeks when I noticed the first positive changes (less pain, more food options). After that is was a slow climb up what felt like a very steep hill.
Looking back it was only a few months ago and the time passed quickly, but at the time, every day seamed to last an eternity.
I do think Dave will recover well enough for the two of you to enjoy this summer. He should be turning a corner here fairly soon. The changes will be very subtle at first so try and remember the patience that has gotten you this far.
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Apr 2010 Posts: 201 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2010 Posts: 201 | Hi Susan! So glad to hear your husbands treatment is done!!! I wish you both a fast recovery. You seem to be a very strong willed CG and I know your husband will do very well in your care.
CG to Sister (42). Smoker quit @ diagnosis Dx 4/20/10 SCC T2N0M0, Rside of tongue Hemigloss R neck dis, all nodes removed 6/2/10, Trach and NG in, home 6/8/10,8/18/2010 start erbitux x6, 30 IMRT end 10/11/10 with only 3x erbitux due to reaction and one week off of rads 1/10/2011 Clear PET!!!
| | | | Joined: Feb 2010 Posts: 235 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Feb 2010 Posts: 235 | Thank you, thank you, thank you for the replies. Had to laugh at some of them. I think Dave would get a kick out of me being called strong willed. I'm betting that when I'm waking him up to eat and it's the last thing he feels like doing strong willed isn't the word that comes to mind.LOL
As for him getting my attention with a horn(that image cracked me up) I need something to get his attention. Right now his hearing is awful(or selective...). They think it is a function of the tubes swelling and all the mucous hanging out in there.
So, fatigue, mucous, hoarseness, pain all normal??? UGH. If I'm getting this right, it sounds like all of a sudden bit by bit symptoms start to subside.
Kelly, it's funny you mention the dog. No matter how he is feeling and how much the rest of us are around to do stuff Dave consistently gets up to take care of the dogs. I'm also reassured to hear that gaining weight is tough. He's getting 3000 calories through the drinks and not gaining. What is that about???
Last edited by SusanW; 05-16-2010 09:09 PM.
CG to Spouse BOT, Chemo and radiation started on March 29,2010 Ended on May 14,2010. LET THE HEALING BEGIN!!!
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