• eweneek's Avatar

    eweneek asked a questionBreast Cancer

    Has anyone else developed symptoms of myalgic encephalomyelitis following cancer and chemo treatment?

    13 answers
    • angellinda's Avatar
      angellinda

      I have much of all you mentioned. Its so hard to live in this much pain & agony. I truly feel like I was tortured and left to Die. But I haven't Died yet. Probably because I can't afford to live or Die. My husband lost his job in '09. I lost mine when I had Disabling Treatments with Triple Negative Breast Cancer in 2010. We used up our means, savings, income etc.. I also scare easily! My husband will walk up to me & I scream! I mean I scream like I never saw him before in my life. Then I scare him. I also got PBA. Not one DR. knew what that is.. Uncontrollable Laughter or Crying outburts at the most INappropraite times.. We have a contaminated rural well water & many issues.. Even duriung treatment I couldn't have the needed scripts, tests & quality care I needed. We do the best that we can! We know we're not alone in our issues.. These 'Collateral Damages' are so hard to live with.. Also I know if we're low on Vitamin D levels. We cna have alot of issues. My oncologist didn't believe in the values of Vitamin D. Nor did he listen to these issues.. I just want healing, wellness. I don't like this new normal. I feel so depressed & Useless. I wish everyone their own wellness & feeling like yourself once more. Please be kind to yourself. You've been through enough.

      over 1 year ago
    • Nanajen's Avatar
      Nanajen

      I have a blood clot in the right atrium of my heart. The doctor put a camera down my throat and said the clot was caused by the tip of the catheter end of my port was snapping against my atrium resulting in a blood clot

      over 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Amgellinda, it sounds like you've had a lot to deal with. If your oncologist won't work with you, ask your Primary Care Physician to help. (Try to change oncologists.) Has anybody told you there are places to get free drugs? Even large chain grocery stores give certain prescription drugs free if you buy groceries there. Ask their pharmacy for a list of free prescription drugs, and ask your doctor to try to prescribe from their list. (They might have their drug lists online.)

      Try needymeds.com to apply for free drugs by mail. Each drug manufacturer usually has a medicine assistance program for low-income patients. Also the American Cancer Society 1-800 phone number can give you information about applying for financial help for almost anything. I assume you've applied for Medicaid, Food Stamps, and Social Security Disability. Vitamin D is free if you sit in the sun with your skin (arms and legs) exposed at least 3 times a week for 30 minutes.

      If your doctor, hospital, or clinic has a Social Worker, please talk to them and ask for any information they have to guide you. Call your church or a neighborhood church and ask if they can assist your family, even if it's just assistance filing applications or advising you. Best wishes to you.

      over 1 year ago
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    eweneek started following

    User: geekling

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    eweneek asked a questionBreast Cancer

    Can anyone share an experience with superior vena cava thrombosis - a blood clot forming around access port used for chemotherapy?

    • ticklingcancer's Avatar
      ticklingcancer

      I did not personally run into any problems with my port. Is this something the Dr's feel will resolve itself with the injections?

      over 4 years ago
    • eweneek's Avatar
      eweneek

      I am told the prognosis would have been better if I had received treatment right away. As it is, the clot has completely closed off the large vein above my heart, has calcified, and has begun invading my jugular veins. I have developed what they call collateral veins which have become very prominent in my neck, chest and upper arms. They developed to help drain the blood that backs up in the upper body. The vasulcar surgeon who started the lovanox treatments is hopeful that my body will continue to develop these collateral veins and believes there is a chance of the vena cava possibly recanulizing. I have been doing the shots for almost a week and can already see a significant improvement in the swelling. I believe the other symptoms will eventually resolve as well. I really want everyone who has a port to be aware of the symptoms so they can get the proper treatment right away. I had not expected a problem with my port because there were no symptoms at the port site itself and it continued to function just fine.

      over 4 years ago
    • syl1963's Avatar
      syl1963

      I have breast cancer diagnosed a month ago and had blood clot in my lung.
      I'm taking levanox and coumadin and now my double mastectomy is delayed.
      Can you tell me better about your experience because I'm scared to death.
      Thanks
      Sylvia

      over 3 years ago
  • eweneek's Avatar

    eweneek shared an experience

    Side Effects (thrombosis - superior vena cava syndrome): A couple months after completing treatment, I developed swelling in my neck and eventually my face and entire upper body. I also experienced shortness of breath, visual disturbances, vertigo, throbbing in my head and neck, all exacerbated by bending over. I found it difficult to breathe when lying supine, so I started sleeping in a recliner. I visited several doctors over the next three months, but none could come up with an answer. At one point, the sympoms were so severe, I went to urgent care where the PA consulted a radiologist who said the symptoms indicate a blood clot in the large vein above my heart. A CT confirmed a blood clot in the superior vena cava which the radiologist described as being "as long as a hot dog and as big around as a Twinkie." The clot had formed around the access port used for chemotherapy. The radiologist wanted to do a cath procedure to disolve the clot, but the ER doctor and the hospitalist convinced me that was too dangerous. I was admitted with IV heparin and went home on Coumadin. I was hospitalized two more times with the Coumadin level being raised each time and adding once-a-day Lovanox shots to my tummy. The clot continued to grow and invaded my jugular veins and the symptoms intensified. None of my doctors knew what to do and a couple days ago I was finally referred to a well-respected vascular surgeon in another city. He seemed to be much more knowledgable about this phenomenon. He said this type of clot does not respond well to Coumadin and that the amount I was taking is very risky for intracranial bleeding. I am now taking the Lovanox shots every twelve hours. My symptoms have improved slightly. Although I completed treatment with no evidence of disease, the vascular surgeon recommends a PET scan, because, in his experience, this type of clot often indicates active cancer.