Cancer,FMS,CFIDS can't make thru Radiation! HELP

Discussion in 'Fibromyalgia Main Forum' started by sandy1, Aug 26, 2003.

  1. sandy1

    sandy1 New Member

    Please help me if you were in my shoes what would you do? I have All the DX above; made it thru 6 cycles of chemo. thought Radiation would be a snap but it or the combo has put me in the worse Flare of my life!! The end of this week, is 4wks. or 20 treatments of the 6weeks or 30 treatments. 30=95% of -recur 20=63% Chance it dosen't recur.I'm in real pain,can hardly walk,plus the fatique is totally dis-abling. I just want to be left alone!My mind isn't thinking straight and my body can't walk straight.All my joints are swollen,my IBS is horrible, and my migraines are constant.My Raidiation Doc is trying to call Dr.Lapp with no success. HELP ANYONE whose been here or done this? Pray for me! Sandy1
  2. Dlebbole

    Dlebbole New Member

    Hi Sandy

    I'm so sorry you are having so much trouble with the radiation. I have had 14 out of 35 treatments. So far, many of my symptoms are returning (all CFS and fibro symptoms totally disappeared during chemo!). But I have to admit I'm cheating a little. I read about tumeric and how it can help get one through radiation. My doc said don't take it as a supplement, but I can add "some" to my food. Well, I add a LOT to my food. Do a search on it. It's confusing, because of the current thinking that any kind of anti-oxidant may lessen the effectiveness of radiation. But if it helps you through treatment.....I don't know. I'll be thinking of you...Diane
  3. sumbuni

    sumbuni New Member

    I am SO sorry to hear that you are suffering so much! I heard the other day that some doctors are treating brain fog and fatigue with meds for ADHD. I have CFIDs and am on med used for treating ADHD..."Straterra"....and it does seem to help.

    I wish there was a way that I could help you. I will say a prayer for you, God is so merciful. Please hang in there.

    Love, and prayers

    Sumbuni
  4. Shirl

    Shirl New Member

    I feel so badly for you, but have no advice, except when my brother was going though the chemo/radiation, he took 'Essiac' herbal tea by the Resperin Corporation (with the consent of his doctor), and it did help a great deal, but he did not have FM.

    I will surely keep you in my prayers and please keep us updated on your condition.

    God's blessings going out to you right now........

    Shalom, Shirl

  5. Jen F

    Jen F New Member

    I don't know enough about how radiation works to kill the cancer and how it would tie in with CFIDS/FM.

    I am so sorry you have this terrible decision in front of you.

    At least you have made it to the 63% mark for no recurrence.

    I wouldn't blame you if you decide you cannot continue with it.

    I hope you can get some info that will help you make an informed decision.

    Jen F.
  6. Dara

    Dara New Member

    radiation, but my Daughter did. She had intensive chemotherapy for nine months for Leukemia. She also had Fibromyalgia. I know how sick it can make you and I know there were times she just wanted to give up. But, thankfully, she didn't give up. She continued with the treatments that the Oncologists recommended. That was six years ago and she is still in remission. The type of Leukemia she had has only a 20% chance of remission.

    I understand how hard it must be going through it every day, but please try and remember that when you are finished it will be worth it for you and your family and those who love you.

    I know that this is a very personal decision to make, I hope you have the strength to choose what is right for you.

    Dara
  7. Mikie

    Mikie Moderator

    Is there nothing they can give you for pain while going though this? I am so sorry for all you are going through. I keep you in my prayers.

    Love, Mikie
  8. lmn

    lmn New Member

    I have no advice to offer, but want you to know you are in my thoughts and prayers. Take care, lmn
  9. sandy1

    sandy1 New Member

    Hey I'll try anything. How much and when? thanks guys for all the prayers,keep them coming! I'm going to ask for a pain killer, all I have is Vicodin and I don't like it.Thanks again, Sandy
  10. ksp56

    ksp56 Member

    My heart goes out to you. I went through chemo and radiation, for breast cancer, five years ago. Without Fibro, it was exhausting. I know they want to do raditaion right away, but could it possibly be put off, even if just for a few weeks, so you rest some? Your radiation Doctor needs to keep on calling Dr. Ladd. Why isn't he available, especially to another specialist?

    It is your choice and I know it's extra confusing now due to tiredness and pain. I know you are giving it deep thought, especially with the statistics.

    Do ask about delaying your radiation, the most the can say is no.

    I wish I could be more useful, but I'm here for support and many gentle hugs.....

    Love,

    Kim
  11. Dlebbole

    Dlebbole New Member

    Before I did radiation I had read an article about how tumeric is protective against the negative effects of radiation. It is an antiinflammatory and an antioxidant. Like I said, there is controversy about whether or not to take any antioxidants during radiation or chemo because of the theoretical risk that it may help the cancer cells, if any remain. But I feel that we with CFS/fibro are already so very low in antioxidants, that I feel it's worth taking the risk. Having said this, I am less than halfway through and am sadly getting all the old symptoms back. Question: What would you do if you stopped radiation? I mean, what would you take as a therapy for the fibro? Or are you just assuming that things will improve if you stop radiation?? Diane
  12. Jillian40

    Jillian40 New Member

    I don't know how either of you feel about a christian based prayer, but if you're open to it, then read on . . .

    I'll type as I think and pray outloud.

    Dear Father God, on our hands and knees tonight, we beseech you for your protection and guidance. We come before your throne of grace; to receive mercy and find grace to help in this time of need. Father, I know that your ears are open to our prayers. I ask that you attend to me and listen, for these two beautiful women are distraught and restless. Fear and trembling have come upon them as they face trials of many kinds.

    "I know Lord that you are my refuge and strength, in your wing you will hide me, and give me shelter from the storm. You will set me high on a rock. And now shall my head be lifted up high above my enemies round about me. I know Father God that No weapon formed against me shall prosper, as you remind me in your word. I can trust in you, my strong God, in whom I now place all of my trust. Yes Lord, in the shadow of your wings, I take refuge and am confident until calamities and destructive storms have passed. You bring to pass your purposes for me, and surely You complete them!"

    I ask for your ever gentle guidance, right now as these ladies have decisions facing them. May you give them your wisdom and the support of those nearby to lift them up.
    May you also give them your favor. May a peacefulness come over them as they sleep and a strength and boldness accompany them as they ask their medical doctors for medicines to help ease the pain, achiness and fatigue that accompanies their illness. Father Raffa, you are the God that heals, so we ask in your mighty name for the healing of their dis-eases, that their bodies be made whole again.

    Thank You God for loving us and giving us your peace to calm and steady us. In your holiest name for our hightest good, we thank you. AMEN
  13. Jillian40

    Jillian40 New Member

    I don't know how either of you feel about a christian based prayer, but if you're open to it, then read on . . .

    I'll type as I think and pray outloud.

    Dear Father God, on our hands and knees tonight, we beseech you for your protection and guidance. We come before your throne of grace; to receive mercy and find grace to help in this time of need. Father, I know that your ears are open to our prayers. I ask that you attend to me and listen, for these two beautiful women are distraught and restless. Fear and trembling have come upon them as they face trials of many kinds.

    "I know Lord that you are my refuge and strength, in your wing you will hide me, and give me shelter from the storm. You will set me high on a rock. And now shall my head be lifted up high above my enemies round about me. I know Father God that No weapon formed against me shall prosper, as you remind me in your word. I can trust in you, my strong God, in whom I now place all of my trust. Yes Lord, in the shadow of your wings, I take refuge and am confident until calamities and destructive storms have passed. You bring to pass your purposes for me, and surely You complete them!"

    I ask for your ever gentle guidance, right now as these ladies have decisions facing them. May you give them your wisdom and the support of those nearby to lift them up.
    May you also give them your favor. May a peacefulness come over them as they sleep and a strength and boldness accompany them as they ask their medical doctors for medicines to help ease the pain, achiness and fatigue that accompanies their illness. Father Raffa, you are the God that heals, so we ask in your mighty name for the healing of their dis-eases, that their bodies be made whole again.

    Thank You God for loving us and giving us your peace to calm and steady us. In your holiest name for our hightest good, we thank you. AMEN
  14. Dlebbole

    Dlebbole New Member

    Thanks so much for your beautiful prayer. It helps knowing that you care and are praying for us. :) Diane
  15. sandy1

    sandy1 New Member

    My relationship with Jesus has always been strong and constant.My chosen religen has let me down lately [Catholic] but never the Lord. I believe this too shall pass and life will go on, I just feel paniced sometimes! Bless you and thank you again. Sandy
  16. sandy1

    sandy1 New Member

    I've had FMS for15 years now and CFS since Dx in 1999.The only med. I was asked to stop during Chemo. was Concerta. Andmy Oncologist did talk to Dr.Lapp, he said the Flair from Hell was just coincidental and she should proceed with her routine. She did prescribe Ultrum to try for the pain since Vicodine does not like my stomach. My fear is I've had the FMS under control, before all of this cancer stuff,and I've stayed on all my meds and supplements through all of this! Will I return to 1st base after this is over? I hope this Flare will subside and I can keep working on the CFS. God Bless you with the grace you need to persevere. Sandy
  17. Dlebbole

    Dlebbole New Member

    Hi Sandy, you didn't mention the things that you never stopped taking. Are there antioxidants among them? Just curious.
    With respect to your doctor I think it's complete denial to say that the flare is a coincidence. Every person I have talked to about this (going through chemo and rads with CFS/fibro) got better during chemo and worse during rads. One of the books I have recommends taking antioxidants on the weekends while on rads. I hope you have Monday off of radiation due to the holiday. I'm hoping to get a little strength going this weekend before starting my second half. I am already tired, with lots of previous symptoms returning. It's hard to keep the spirits up sometimes. Please know that I think about you often and am praying for you. Do you have help at home to get you through this? Diane
  18. kerrymygirl

    kerrymygirl New Member

    You are going through so much. Radiaiton breaks down your immune system even more... Like you need that....

    This is so much more diff. dealing with the fm/cfids, plus all the treatment. You have a prob. long flare ahead so get all the rest and nutition you can get into you.

    We are here for you so keep up the good fight you will make it even though I am sure there are times you wonder how much more. That would only be normal I ask myself that everytime a doc adds another illness to my already too long list.

    I give you my blessing & hugggggss You can make it!
  19. sandy1

    sandy1 New Member

    Here they are: Allergies= astelin & nasoex/nasal sprays,patanol/eye drops,Allrgra-D-ER & Allfen/BID. Sleep=Ambien & Amitriptylinr"Elavil"/1PM. Atenol/hypertension. Celebrex/BID. Clonazepan"klonapin"/2.5 mg Bid. Cyanocobalamin "vitamin B12" 10ml.mdv/inj. sub Q/1cc. 3xweek.Cyclobenzaprine HCL "Flexeril"/1pm. Nexium,40mg.1am.IBS Concerta,1am. Zoloft 100mg.1am. These are my daily Prescriptions. I also use as needed Lomotil, midrin, vicodin,Compazine and Imetrex/nasal spray. My daily supplements are: Centrum Silver 1am. Vit.B Complex with Iron 1am. 1500mg. of vit.C,1000iu. vit.E,1000 mg.Calcium, 400mg.Magnesium,Zinc 15mg.,Potassium 200mg., Evening Primrose oil 1000mg.,Fish oil 1000mg.,Folic acid 800mg.,MSM 200mg., CoQ10 100mg. I stopped HRT and Flax seed oil at cancer dx. As you can see I take a great deal of anti-oxidents and have straight therepy, each Dr. has been given a list and none have said to stop anything but the Concerta during Chemo.I was told at 1 ER. "You win the longest most expensive med list they've seen" Guess they don't get many CFS/FMS patients. Take care of yourself,Sandy
  20. Dlebbole

    Dlebbole New Member

    Isn't it odd that you take all that and I was told to stop everything? Now I wish I hadn't because it's always so hard for me to start anything up again when I am so reactive. I'm starting to really struggle with the radiation. My right breast is being irradiated, and they said I wouldn't have any heartburn from it, but I am. VERY painful. Also, lots of gassiness. Do you have this? Where are they radiating on you?
    I think about you a lot lately. When I feel like I can't do it, I think of you.....what have you decided regarding radiation? Diane

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