#15509 05-25-2004 04:27 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Nancy:Let me extend my welcome to you also. It sounds as if the world kind of caved in on you what with the diagnosis and then the unexpected loss of your husband. Not to get practicle or anything, but I hope someone was able to help you with the paperwork aspects of the loss of your husband, insurance filings and so forth. When my father passed, many years ago now, my mother needed weeks of help with that stuff. If it was put on the back burner, perhaps your son can sort it out for you this summer.
I was also very frustrated with the tiredness after rad and chemo. Our treatments sound similar in that respect. What they found was that the rad and cisplatin killed my white and red blood cells pretty good, along with the cancer, and put me on Prokrit which built my blood counts back up to past normal in 6 weeks after weekly shots administered at my house. You might ask about that if your energy problems are due to blood counts that are way low.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#15510 05-25-2004 10:52 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2004 Posts: 146 | Hi All,
I wanted to say THANKS! for making me so welcome to this club that nobody wants to join and for making me feel so welcome and at home. I know that I've found some new "best" friends. In response to some of the things you brought up in your reply, Kirk, I had six weeks from the day my husband passed away (which was Memorial Day ...) till I had surgery so I put most of my energy in trying to settle as many aspects of his estate as I could before checking into the hospital. My husband was also self-employed so I also had to dissolve all his buisness dealings which was probably the hardest part because there were many things I didn't know where to start. I've done pretty well except for those expected notices from the State of New Jersey or the Federal Government asking for information that I've given to them a hundred times already!
Kirk, you also mentioned that you were given Procrit to help boost your energy. Well yesterday I went to see my oncologist for my three month checkup or "tune up" as I like to call it. Everything checked out fine which gave me a sigh of relief. My white blood count has always been on the low side during and after treatment but not enough to "qualify" me for using Procrit. I voiced to my doc yesterday that I can't continue this way in which I was literally falling asleep behind the wheel (thanks GOD I would catch myself before something happened) and also at work. He started me on Provigil which is mostly used to treat narcolepsy patients. It's suppose to help in keeping me awake and I'm happy to report that although today was the first time using it, it was also the first time in a long time that I didn't catch myself falling asleep at the most inopportune times! Let's hope this drug keeps working like it is so far!
Thanks again for embracing me with open arms - you don't know how much that means to me. Family and friends try to understand but in reality they can't even begin. They have a hard time seeing me as a new widow, no less a slave to cancer, so to speak.
Take care and hugs from me,
Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#15511 05-25-2004 12:35 PM | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Nancy, just an idea, but when your docs did their follow up blood work, did anyone check your thyroid function? Hypothyroidism from radiation is a common event after treatment, and one of it's primary symptoms is lack of energy. Many of us are on Synthroid from now till forever, and it works well with little in the way of side effects.
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. | | |
#15512 05-25-2004 12:43 PM | Anonymous Unregistered | Anonymous Unregistered | Welcome Nancy,
Sorry I'm late in posting. Been away from the board for a couple of days. Just`wanted to add my voice to others and say we are looking forward to hearing from you and having you share.
Take care, Dinah | | |
#15513 05-25-2004 05:21 PM | Joined: May 2004 Posts: 6 Member | Member Joined: May 2004 Posts: 6 | Nancy,you are an example of courage. I am new too to this forum but I join the others to welcome you. Thanks for sharing your experience.
Hugs
s.paull
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#15514 05-25-2004 05:53 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Nancy and welcome to this forum. I am 10 months post treatment (surgery and radiation) and approx. 2 months ago started on Synthroid. I was overwhelmingly tired, cold and just plain miserable energy wise so they did a thyroid function test. After approx. 2 weeks on the medication it was an amazing improvement! I would suggest asking for this test if you haven't had it. Again, welcome! 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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#15515 05-26-2004 04:11 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jul 2003 Posts: 382 Likes: 3 | Nancy- Welcome and thank you for sharing your journey with us. Sometimes when we are down and we read the journey that someone else has traveled we realize we haven't had it half as bad. Wow - you are really an inspiration of strength and endurance!! The Synthroid has worked for me, too and I'm 21 months past treatment so keep it in mind. God bless you and my prayers are with you and your family. Love-Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02 Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation Every day is still a gift :-)
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#15516 05-26-2004 08:04 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | OP Gold Member (100+ posts) Joined: Apr 2004 Posts: 146 | Thanks for the advice about having my thyroid checked - I'm not sure if they checked that when they did my blood test this past Monday but I think I'll call my doctor and ask if they did. Maybe that's the culprit for my being so tired and the muscles in my legs are really bothering me - they ache - is that possibly a symptom of the thyroid not functioning properly? Thanks for the input guys!
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#15517 05-26-2004 08:34 AM | Anonymous Unregistered | Anonymous Unregistered | Nancy,
I can only share what I have been told about the leg aches (and they seemed to be perfectly on target every time) It is sometimes a function of blood counts (such as low red and hemoglobin) It is the bone marrow thing working to make more good cells. Since I see you have had chemo this could possibly be what is happening with you. Being tired is also a symptom of low red & hemoglobin. Procrit is used for low red. Neupigen is used for low white.
Maybe your reds are borderline low? Just a thought and a shared experience.
Did you ask him about the aches in your legs?
Dinah | | |
#15518 05-26-2004 01:01 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Hello Nancy Welcome to this board. It sounds like you have been through a lot in recent times. I know how you feel in some ways. I have no live-in caregiver and was self-employed when I became ill. I had to leave my hometown to receive treatment and had to organise my clients and my personal affairs before I left. I have found this board so helpful and supportive. The thyroid test is a good idea. I too was hypothyroidic and could hardly put one foot in front of the other at one stage. Thyroxine replacement is simple and very effective. From Helen, with love.
RHTonsil SCC Stage IV tx completed May 03
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