| Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2009 Posts: 31 | Hi guys
Just wondering if any of you could share your recovery details with me? Im four months out of tx & still feeling pretty awful, no energy. Am back to work full time & walking to & fro bus stops, eating well (thankfully) but very tired. Am I expecting too much too soon???
PJ x
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue. Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | PJ,
I'm going on 7 months out and am just feeling that I am getting back to normal activities.
4 months out I was still struggling. Low energy was still a problem for me at that stage. Eating well is a good thing, as it will help increase your energy levels (I was good with eating at 4 months also).
I was back to work at 4 months and was drained at the end of the day. Now, after a long day, I have the energy to go out and do a lot of things I would have avoided a few months ago.
I still have a good number of things I have yet to try getting back to, but I�m fairly happy with how things are progressing. Somewhere back there, after the 4-month mark, there was a hump that I got over and realized the slope was more downhill than uphill. I�m not sure I can pin-point that event but I feel much more energy now than I did 4 months out.
I think you are close to creasting the hump. Just keep faith in yourself and you should be fine.
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | PJ, your story sounds just like mine. I was pretty much flat on my back for three months after TX. In fact you're ahead of me - I didn't get back to working for a few months after that, and began part time.
I would say just don't stress it. I'd read - perhaps here somewhere - that a general rule of thumb is one month of recoup for each week of radiation. Naturally we're all different but that was certainly true of me. I finally turned a corner about 7-8 months out.
Hang in there - the worst is over!
D2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | This body wishes it would hurry and get energy that isn't forced and might be real vim and vigor. I'm well past a few months out and now into years and still have to force daily things to get done. We are all different they say and as sure as hell must be. LOL weird too.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | Have you had your Thyroid checked? How about blood work? I need to take Thyroid medication and biweekly B-12 shots to get me to where I needed to be. It was amazing to me what getting all the correct meds did for me.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school the 21st Century consider 3.0 as the highest acceptable level. Before TX, I had a TSH of 1.6 and after TX it shot up to 4.3. Now that I am "on the pill", I am finally warm again. Plus my energy is back My TSH level is down to 2.17. Of course there could also be nothing wrong at all with your thyroid as 4 months is hardly time to fully recover. But it worked for me. Keep the Faith Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Your post on the pill reminds me of the news this morning with them talking about the no KNOCK Up Pill for men maybe. LOL I hope this gives you a chuckle Charm. You still have a great way with words and people. Hell tho, with my life of celibacy, I sure don't need birth control. Dang it anyway. LOL
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Sep 2009 Posts: 31 | Thanks guys, I was beginning to feel a wimp. I went back to work part time 3 weeks after tx Im sure my bosses are getting fed up with me being tired all of the time, not to mention avoiding going up the stairs apart from using the loos! David, I have made an appointment with my GP to get my iron/thyroid levels checked out. Have a good weekend all!
PJ xxx
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue. Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | PJ, Wow how I can relate! I had a severe ass whuppin' for my treatment. I was very active before treatment. I lost 40 pounds and was a 150 pound weakling at the end of treatment. for several months i could not walk for more than 1/2 mile ( bad for a marathoner). I remember struggeling to lift a 40 lb bag of dog food. I talked to my doc, normal. Looked for advise on this forum..normal. It was about 8-10 weeks when I started to get energy back. by 14 weeks i was doing pretty good. I did get back to a stedy light weight lofting and exercise routine and it helped quite a bit. I am 8 months out now and doing well. Not where I was, but 90% energy level. It is a slow road back and not a straight one! there are many curves, lots of ups and downs and too many pot holes! just keep moving forward, you will make it
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
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