• eweneek's Avatar

    eweneek asked a questionBreast Cancer

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

    22 answers
    • angellinda's Avatar
      angellinda

      Thank you for replying to me and caring. How are you? Any help in feeling any bit like yourself? It sure is hard with so much pain.. So much neuropathy, and a body that has been ravished by Cancer, Chemo and radiation. Just because I look somewhat Good. Doesn't mean I feel well. This rectal cancer diagnosis sure has me down.. As does a broken Molar. It is unbearable pain from a molar that has just 4 points left at the gumline.... I wish I knew what to suggest.. Or how to help you.. Not only this the Depression, PTSD., neuropathy, lack of Energy, Chemo Brain, Migraines & irritabilty issues.. Is hard to manage... I had blood when having bowel movements that I assumed were just my 'New Normal' after TNBC. I couldn't make it to the further away earlier appointment. That is why my colonscopy was done on 12/28/2017. The earliest possible only 15 miles from me.. Having a Car that can't take me far doesn't help.. Having no income doesn't help.. Asking and receiving help is almost impossible.. I have no more energy or strength to ask for help that isn't avaiable to me in Custer, WI. 54423. The middle of NO where... Best wishes to you. May you keep making little stridesin your wellness!!! May yo ualways stay NED.

      about 1 year ago
    • eweneek's Avatar
      eweneek

      I am doing better, Angellinda. I sure wish you were, too. In the past, I was known as a dedicated and hard-working gal. I did not realize how much my identity was tied to my work until I could no longer handle the job either physically or mentally. I also enjoyed taking care of my family, working with the animals on my sister’s farm, participating in community theater, and singing in the church choir. I still really miss the person I used to be and I despise the fact that I now appear lazy! I was never formally diagnosed with ME/CFS although my doctors acknowledge that most of my symptoms are included in the ME/CFS spectrum. Other symptoms can be attributed to Superior Vena Cava Syndrome caused by the blood clot that closed off the major vein above my heart. (An unfortunate side effect of the chemo port) It really doesn’t matter to me what it’s called - the bottom line is that I am significantly limited in what I can do. I am only now finally coming to terms with my limitations. It helps that, after a 4-year struggle, I was awarded disability benefits with Medicare coverage and can thus keep the wolf from the door. I am also blessed with a very supportive family. My husband likes to cook and our three children are close enough to assist with the larger home maintenance projects. I am finding new ways to be helpful and productive. Since blood pressure in my head increases when I bend over causing my eyes to blur, my ears to pound, and my balance to leave me, my husband and son built some elevated planters so I can tend a small flower garden. I like to edit photos and scrapbook. During follow up visits to the cancer center I discovered I enjoy painting. On good days I can even care for my 2-year-old niece for an hour or two. The little dachshund/chihuahua mix we adopted from a local rescue center provides laughter and entertainment. Angellinda, I am so sorry that you are fighting such overwhelming odds. My struggles seem insignificant in comparison. I do remember the stress of financial burdens and unreliable vehicles and the inability to think straight because of fatigue. I have never believed that our Good God sends trials to “test us.” We live in an imperfect world and it often seems the innocent suffer the most. But I DO believe that God will help us through our trials if we can open our hearts to Him. I will be holding you in my prayers, Angellinda, that you may find practical assistance as well as peace and healing.

      about 1 year ago
    • BarbarainBham's Avatar
      BarbarainBham

      Anyone who can't work should call Social Security (ssa.gov has contact phone numbers) and apply for Social Security Disability on the phone or online. If you were a Stage IV cancer patient, emphasize your stage and you will get expedited and approved in about 3 weeks. They use your doctor's medical records for you to confirm your cancer stage and side effects, and the approval is based on your ability to work a full-time job.

      There are other types of Disability, including another type of Social Security (SSI). Don't get them confused with Social Security Permanent Disability, or you will get the wrong information, forms, etc.

      To the person who said her oncologist complained about the questions asked on the form about how much you could lift:

      Your oncologist was correct. He can only legally certify what he knows about you (cancer, stage, and its complications or possible side effects related to your ability to work), because that's what his medical records confirm about you. You need to start over again by calling Social Security emphasizing that you are a cancer patient, so they will evaluate you based on cancer side effects criteria related to your ability to work, rather than mobility (how much you can lift).

      The Social Security Disability criteria for approval is available online (ssa.gov) by diagnosis where we can refer to it. If you need help applying, tell Social Security and they will suggest what you can do.

      Wishing all of you the best.

      about 1 year ago
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    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?

      almost 7 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.

      almost 7 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

      almost 6 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.