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Cancer On Top Of CFS! :(

Discussion in 'General ME/CFS Discussion' started by awdbawl, Mar 19, 2014.

  1. awdbawl

    awdbawl

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    WOW! :woot::thumbsup::thumbsup::thumbsup:

    Thanx to all of you who've responded to my initial question: my apologies for being so late in "returning," but I've been without a computer at home; add to that all the MD appts. plus test after test, plus finding out I've got ANOTHER lump in the liver---:jaw-drop::mad::grumpy::aghhh:---all of this has kept me from being able to get back online.

    My bruising is from bumping things, but a lot of time, I have no idea what I bumped (maybe I sleepwalk? :confused:). I get plenty of good nutrients and fluids and haven't ever smoked, boozed it up, done drugs, etc. My worst failing in the food dept. is chocoloholism.

    I can't do megadoses of Vitamin C ingestion because it causes my (already worse than ever now with the liver messed up) plumbing to get hyperactive. :rolleyes: 1K mg is my max.

    I've been taking milkthistle daily for about 7 years.

    As much as I hate the thought of assaulting my carcuss [sic] with chemo toxins and the violation wrought by radiation, my cancer is too advanced for me to consider doing the alternate route (like Budwig or Gerson).

    Sorry, I did not understand the question as to whether I'm "hypermobile." Is that a polite way of saying "hyperactive" (or else that I levitate :p)? Because plenty of folks in the past have called me that, altho the CFS has nixed that to a great extent. :rofl: :rofl: :meh: I am actually hyper-sluggish (if that's not an oxymoron), bec. CFS already made me a "beddy" person (something I never was until I got that durn disease), but now, with this cancer, I might as well just get married to my bed, since it and I are lying together almost 24/7. :balanced:

    And yah, I was wondering if there might be a silver lining to the chemo in the form of it also erasing the CFS (but youch, what a stiff price to pay! :nervous: ).

    Oh, and as for medical mary jane {chortle, chortle}, even though that's legal here in Mexifornica, knowing my ornery/contrary carcuss [sic], it would make me SICKER (that's what happened when I got Kutapressin shots). A lot of stuff I have tried has made me WORSE, or else it does the opposite of what it's supposed to (like low dose Synequan, Rx'd for my insomnia, not only not helping me to sleep at ALL, but to boot, making me weepy the whole day---and I am decidedly NOT a melancholy or weepy person by nature! o_O )
     
    Last edited: Mar 24, 2014
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  2. maryb

    maryb iherb code TAK122

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    @awdbawl
    I love your attitude - although I may be tempted to just try one drop of Cannabis oil:)
    Modified Citrus Pectin also has some good write ups on helping get rid of the toxins from the chemo drugs, I can find you a link if you need one.
    Good news you already take milk thistle, maybe read up on the research to find out the dosage required for this situation.
     
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  3. CBS

    CBS Senior Member

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    Not entirely sure what else I can add after so many comments (except that I'd trust Kati to be my chemo nurse any day:thumbsup:). I may have missed it but did you mention what type of cancer you've been diagnosed with? Just thinking out loud with regards to the obvious (leukemia - bruising) and hoping to prompt thoughts about potentially less obvious issues (what types of chemo might be on tap for you?).

    Very best of luck and yes, there are others on this board who have Dx'd with cancer after years of ME. Hopefully you'll be able to exchange thoughts with some of them.
     
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  4. Kati

    Kati Patient in training

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    Awww thanks @CBS, You're very kind. Incidently I did not renew my nursing license last month. :-(
     
    Last edited: Mar 24, 2014
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  5. Tristen

    Tristen Senior Member

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    I know how you feel Kati. I've kept my license active for years hoping to return to work......but now maybe the time has come to let it go into inactive status.
     
  6. Kati

    Kati Patient in training

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    I had it at 'non-practising' status for 5 years. This year I cancelled it. I'd be able to reinstate it but by now if I returned to work I'd need a refresher at the very least. It was the right choice for me.

    I kind of miss it. i enjoyed meeting the patients and families. They were all special.
     
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  7. Wally

    Wally Senior Member

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    @awdbawl - I have had thyroid cancer and I am a ME/CFS patient.

    First of all I am very sorry about your cancer diagnosis. I hope that in addition to posting on patient forums, you will also think about contacting some of the well-known ME/CFS expert's offices to see if they might be able to talk with your doctors about your situation.

    While not a physician, my suggestion would be to review anesthesia guidelines* that have been published for patients with ME/CFS. It is something that I wish I had known about before my surgeries and I believe it could have been one of the reasons my ME/CFS symptoms worsened following one of the surgeries.

    I also recently ordered my medical records from past surgeries to see if the anesthesia that was given will provide any clues on which of the drugs that were used might be ones that I need to consider avoiding in the future.

    *I did not find the ME/CFS patient anesthesia guidelines when I did a quick google search. Perhaps someone else might be able to provide this information?
     
    Last edited: Mar 24, 2014
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  8. Ember

    Ember Senior Member

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    This recommendation is taken from the ME Primer (p. 20):
    I collapsed in the hall after my surgery, but the hospital still wouldn't find a bed for me. It would be best to make your case known before the surgery!
     
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  9. Wally

    Wally Senior Member

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    @Ember - thanks for posting this information, so fatigued today that I am not sure my head is still attached to my body.

    @awdbawl - I found this article on the Phoenix Rising website regarding anesthesia recommendations, which includes similar information to what Ember has posted above. http://phoenixrising.me/resources/preparing-for-surgery-anesthesia-warning
     
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  10. caledonia

    caledonia

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    I'm sorry to hear about your diagnosis. My mom had ME/CFS for decades and also had cancer five times, so I'm very familiar with this situation.

    Cancer, ME/CFS, cannabis oil, and anesthesia problems are all linked by methylation.

    ME/CFS patients typically have MTHFR mutations and poor methylation. Poor methylation is considered to be a cause of ME/CFS and about 30 other diseases (including cancer). Methylation treatment can help treat these 30 diseases. The first Methylation Made Easy video linked in my signature is an easy overview if you're interested. (no pressure, I'm sure you're totally overwhelmed...)

    Cannabis oil is supposed to help with methylation. I'm not quite sure how yet. I've actually been researching this for a friend of mine who has cancer.

    The liver is where most of the glutathione is located. Glutathione is the body's major detoxifier. Glutathione is produced via methylation. ME/CFS patients are typically very low in glutathione.

    The anesthesia guidelines call for using types that don't impact the liver, thus using up glutathione, thus making ME/CFS worse. This would also be good for your liver cancer situation.

    If you want to hear of a person successfully using cannabis oil for cancer, check out the MTHFRsupport.com Blog Talk Radio Show with Dawn Newton. http://www.blogtalkradio.com/mthfrsupport/2013/03/28/methylation-mthfr-and-cancer The show is from a year ago and she's still alive judging by her online posts.

    This is all just FYI for you and others interested in cancer, and not meant to influence you in any way. In fact, if I was in your shoes, I believe I would go for the conventional treatment and try and mop up toxins later.
     
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  11. Andrew

    Andrew Senior Member

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    Three years after getting CFS I was diagnosed with a squamous cell carcinoma in my tongue, and prostate cancer.

    Not all cancers are alike. But here is one thing I learned. Some natural supplements will actually interfere with cancer treatment. Most chemo therapies (although I don't know which one you will have) go after rapidly dividing cells. If a natural therapy is slowing the cancer process (but not stopping it) you can actually end up worse off by taking a supplement. There is some information on the Internet about this, but I found it so overwhelming trying to figure out each one of my suppliements, I just stopped taking everything for the 7 weeks I received chemo and radiation. That was for the tongue cancer. The prostate cancer treatment is ongoing and supplements are actually part of it.

    If you are going into surgery, though, you should look at whether supplements you are taking are blood thinners. I don't know about you, but blood thinners can cause problems with bleeding in surgery and healing..
     
  12. awdbawl

    awdbawl

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    Thanx to all of you who passed along the good info since my last post. {applause}

    I had figured there might be complications with anesthesia (a dog I used to take care of died during spaying cuz the vet put too much narcosis into her epilepsied system---boohooo), since CFS just makes EVERYthing problematic. {thumbs down}

    @maryb: I had no idea cannabis came in oil form (can you tell I've never been interested in that particular “med”? {snort}). That's a horse of a different color (I wouldn't want to pollute my lungs with ANYthing). And yah, maybe one drop might be harmless... :D

    @caledonia: Fascinating stuff, Cal! Thanx! (And no, I didn't in any way take your post as trying to influence me, no worries. :angel:)

    @Ember: that is TERRRRRible, Ember! :hug: But it doesn't surprise me, either, because the medical establishment isn't geared toward truly helping people, just making mega-bux.

    @Wally: I hope your thyroid situation is much better now. :balloons:

    @Andrew: Ooooo, that must be SO painful, Andrew, to have cancer on the tongue (and no doubt prostate cancer is no picnic, either). :hug: Thanx 4 the pointers on the supplements: I dunno how I would function w/o my sleep supps, though. {scratching head} :(

    @CBS: The cancer that's been detected so far is HER2, but they don't know yet whether the liver mass is part of that, or liver cancer proper (test on Monday).
     
  13. Andrew

    Andrew Senior Member

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    What are your sleep sups. I continued with sleeping pills plus melatonin.
     
  14. peggy-sue

    peggy-sue

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    Last edited: Mar 26, 2014
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  15. August59

    August59 Daughters High School Graduation

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    Even when I was going to Hunter Hopkins Center and the Mayo Clinic and all the doctors since then, I have never had my NK function tested.
     
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  16. August59

    August59 Daughters High School Graduation

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    I'm not sure if this answers your question about hypermobile, but after I had my tonsils removed the decided to go after the lymph nodes with radiation. Prior to starting the radiation I had another PET-CT Scan which showed the initial lymph node as still having hypermobility at 2.3 or 3.2 cm (I can't remember). By the end of the cancer treatment that same lymph was almost gone (they actually was hoping and was expecting it to be gone) as it had shrank to .2cm and would not even infuse with the radio-glucose contrast agent, plus the ones around it would not uptake and of the contrast. If I remember correctly they actually killed 9 - 10 lymph nodes all together starting at the tip of my chin going back under tongue and getting a lymph node that is at the base the tongue. Straight up from there to about even with the bottom of my right ear and come back forward to the initial lymph node.

    I do have my last (I hope) PET-CT Scan in about 1 month. I expect good results. The biggest surprises I had was how bad the radiation increased my pain for about 6 months and how it effected my sort term memory, which at 1 year now it is just about to pre-cancerous conditions. I also became suspicious of something when they increased one of my pain meds I received no decrease in pain. I got my 23andme results back a few weeks ago and it had my CYP2D6 as being +/+ homozygous. This is the liver enzyme that about 50% of all medication are processed through although many can by processed an alternate pathway, but some can't and you end up with more side effects and toxins and no relief. There is a blood test for this now that is extremely accurate and breaks down your CYP2D6 into about 14 different subsets (some of these are specific to certain ethnicity).
     
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  17. August59

    August59 Daughters High School Graduation

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    Andrew is exactly right on saying that there are what I would say is many forms of the same cancer. Many cancers have viral cells in them, but from what my rad doctor told the viral cancer cells are easier to treat because most of them will melt like pudding when radiation hits them. I can't remember right of the top of my hair, all of the herbal products and vitamins he asked if I was taking. After my radiation was over he told me to wait one week and start the Vitamin C, garlic and it might have been NAC or Alpha Lipoic Acid to help clear all they toxins and help the organs that have had take a beating from not only the cancer but treatment and the PET-CT Scans. He said that would probably seen liver and blood changes for up to a year afterwards.
     
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  18. determined

    determined Senior Member

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    Hi Awdbawl,
    I'm sorry to hear this. CFS can be more challenging to overcome, but the big C wins the scary contest, hands down! I had the same fears you have (although I didn't seem to have the wound healing issue you are worried about). I was treated with chemo and radiation, as well as several surgeries.

    I would say that my CFS symptoms had a dramatic SHIFT. I went from weakness and fatigue being my main problem to pain being my worst problem. The shift was fast, within a few days of the first treatment. After quite a while, the pain problems (fibromyalgia-type pains, head to toe) got better (low dose remeron helped a lot with this).

    For about 18 months - 2 years after chemo, the weakness and fatigue was much reduced. So I would count myself among those who got better on chemo.

    Be careful with some of the well-meaning suggestions here. Chemotherapy WORKS. Depending on what type of cancer you have, it can cure the cancer. Ask your oncologist about any supplements. Cancer cells are definitely not normal, but they may in fact benefit from some of the supplements mentioned. This issue is not resolved yet. See what the chemo does for you.....I remember relishing the irony that, during this time, people were bringing me meals when I had more energy than I had in years and years. I was able to go for walks during this time - unthinkable before the chemo.

    It was a crazy time for me. The CFS most of my life, then the cancer diagnosis. My husband at the time informed me that, after the treatment was done, he planned to leave me. I was an absolute wreak....BUT...in the face of all this, I got BETTER. Be optimistic. Expect some bumpy roads, yes, especially if you are not menopausal yet. I wasn't, and being yanked into, out of, and back into menopause was challenging. But again, overall, I got BETTER. Maybe you will too.
     
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  19. Andrew

    Andrew Senior Member

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    Even two cases of the same cancer are not necessarily the same. For example, prostate cancer can be very aggressive, or it can sit there not doing much for decades.

    Which chemo did you get?
     
  20. awdbawl

    awdbawl

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    Today was an absolutely EGGGGzawsting day, filled to the brim, so I can't reply the way I want to 2nite, but these latest posts, again, were very informative and useful, and I thankee kindly for your input. Real quick, tho:

    Melatonin, Benedryl, calcium, magnesium, Rest & Repair, alternating nites with Tazo (passionflower tea plus drops) and Tension Tamer tea mixed with Sleepytime Vanilla, “spiked” with Lemon Balm drops.

    I can't hack any of the official sleep meds, viz. Ambien, Lunesta, Remeron (oh that one KILLED me! Total torture!), etc. My carcuss [sic] turns those into the opposite of what they're supposed to do, or else gives them the cold shoulder.

    TTYawl later. :thumbsup:
     
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