4 Days Post CVP

Hello,

My name is Nicole. My 59 year old healthy mother has just had her first round of six CVP cycles. Today is day 4 post her first infusion. There were no complications, discomfort or pain during her session. Her port worked well and she remained in incredibly high spirits. Appetite has not been a concern, nor has her ene. August of this year she had her kidney removed due to a renal cell mass that was under 2 inches in size. Only previous symptoms was unknown neuropathy in her finger tips and toes. She had a fall in October of 2018 On her tail bone. Neurosurgeon has deemed the slight stynosis in the upper vertebrae may have caused some of that neuropathy, but after nerve studies it has been determined to be unknown. I introduced her to alkaline semi-vegan eating. She has cut out all red meat, processed foods, carbonated drinks and most animal products. She drinks 64-128oz of alkaline water a day. Fresh green juice made with a masticating juicer is supplemented with turmeric, reishi mushroom powder, chlorella, ginger and hemp powder. She also gets fresh orange, turmeric, ginger, pineapple juice that I make for immune shots daily. Black seed oil is taken once a day. Her oncologist, an amazing man who is recognized by his former employer, th Mayo Clinic for his excellence in the are of treating NLPHL, is astute and a proponent of complimentary treatments. 

Mom is 5'11" and weighs 155lbs. Though she was a bit heavier pre-surgery, she's very svelte. Always a balk of energy with a light that shines so brightly, everyone around her is drawn into her warmth. She's the type who even transfers stop to smile and talk with or ask for a hug from her. I can't explain her spirit and exuberance. Today when I saw her laying down on a day she's normally be up heading to worship services, I knew she was a bit out of sorts. Within moments of walking into the house, she lit up and rattled off what she had eaten for breakfast with a huge smile on her face. She remarked that though she feels sluggish, she won't allow it to get her down. I wonder what we should be doing or know to look for as she moves through this. Her infusions are on a 3-week cycle. Aside from Warfin (Coumadin), she was in Onadasetron (Zolfran), and Prochloroperazine/Benadryl as needed. She previously was in blood pressure meds for over 25 years, but with her new clean approach to loving and eating, has been removed from it and asiorin. At present, she only uses eye drops for her low-grade glaucoma. What more can we do to ease this transition? She meditates daily, stays active, eats well, listens to uplifting music, prays and uses affirmations often. 

it goes without saying that I want her to be well. She's the backbone of the family and has been the caregiver emotionalky for her five siblings since her mother passed from renal sarcoma when she was only 13 years old. Discovering resources on covering the costs of treatment and meds, along with complimentary therapies that may be available in our area of Virginia would be helpful. I'm so grateful to have this forum and wonderful people on here to turn to, as I often feel alone and burdened to make things right for mom. Dad and mom friends, many whom are women who have gone through various "c" diagnosis', are great as well. No one seems to be able to relate to my struggle. She started treated days before my 40th birthday. Heavy and difficult to think about celebrating for myself. But I have to stay strong for mom. That's what's important. 

Looking to make friends, because I am so lost. 

Blessings and courage to all!

 

Nicole

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    Sorry to hear of her diagnosis...

    But, in my mind there are two crucial aspects of a caregiver: Care and Prayer. Love drives both of them and you have an abundance of love. The toxic effects of chemotherapy are cumulative - meaning that they increase as treamant goes on. Her marrow is taking a beating and that produces all of her blood cells. Her blood numbers will probably take a nose dive, as is expected. Her energy level will go along with it. She cannot help but feel drained. And, if she is taking a nap, reast assured that she needs a nap. Before you make drastic changes in her diet, please call and check with nurse. There are some forods which inhibit liver enzymes that are necessary to metabolize the treatment. Thus, eating things like grapefruit might even reduce the effectiveness of the chemo.

    Other than that, just be there for her as much as you can. Pay back the love she gave you in your first years and on through your life. A couple of tihngs about love: 1) It desires the good of the "other" - even if that requires suffering and 2) love does not count th cost. We can hope and pray for a good outcome because, at some level, it is out of our hands.

    Please let us know how she is doing!

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    Be sure to review ....

    ... her supplements and natural foods with her physician. Some of them can counteract the chemo. Better safe than sorry. Be especially careful with echinacea. My physicians recommended no herbs or supplemments be consumed  during chemo. That includes herb teas.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    ShadyGuy said:

    Be sure to review ....

    ... her supplements and natural foods with her physician. Some of them can counteract the chemo. Better safe than sorry. Be especially careful with echinacea. My physicians recommended no herbs or supplemments be consumed  during chemo. That includes herb teas.

    Agree

    Nicole,

    As Shady noted, some herbals COUNTERACT the proper functioning of chemo.  Do not start her on anything without explicit approval from her oncologist.

    I had NLPHL, which ordinarily is not too hard to get into full remission, although getting there can be torture.  CVP can be a butt-kicker, expecially because of the "C" drug in the combination,which is harsh, and even used in pre-transplantation prep.    The Vincristine she is receiving is also notorious for worsening of neuropathy.

     

    Bless her and you,

    max

  • lindary
    lindary Member Posts: 711 Member
    Cheers to you mom

    First I want to say tht the guys are spot on about supplements. I listed all I took and let the medical team tell me what to stop. Where I had fun was when they asked why I took garlic. My response "to keep vampires away". They never took it off the list and I still take it. Although many others were cut. (Some of which I haven't gone back to.) I read the warning about herbal teas and chemo so I limited myself to back or green tea. If the Dr or article I read sayd 'maybe' I didn't use it.  My belief was, if it could affect how the chemo worked I wasn't going to take it. 

    A coworker who is a cancer survivor told me how a couple of her favorite food she had while doing chemo and couldn't them after. So I gave up chocolate & beer.

    Make sure you let your mom know that it is ok for her to take naps while going though treatment. Her body needs it.

    When you described her it reminds me of how I felt. When around family, friends, coworkers, even medical staff (I was able to work through the treatments) I kept a happy face. What my family didn't see were the times I sat in the bathroom crying just to let it all out. Usually there wasn't any reason. Your mom will have down time but you know her. Just be there for herand let her talk. My guess is that just talking to people she knows will help her feel better.  Good luck to her and you.