Davina's Journey with Lymphocyte-rich

Survivor: Hodgkin Disease > Classic Hodgkin Disease > Lymphocyte-rich

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 12 years ago, Female, Age: 48, Stage II

  1. 1
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Had my port installed on the 28th if I remember correctly. I had no idea what to expect or what it would be like, only little clues when the doctors say things to you during your visits to them; you tend to hear a lot of things and sometimes you are still buzzing from the diagnosis. I healed just fine from the surgery, which I always did before treatment.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  2. 2
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Began chemo therapy on the 3rd of Jan. 2006. Sure it was easy enough to do, I just sat there in the large chemo lazy-boy chair where the temperature of the room could make ice form. The practitioners came to you and explained what they were going to do and what they were putting in you. First a cleaning shot of saline to clean and prep the chemo port; and the "smell" or the "taste" from the saline you sense becomes a nauseating sensation after going through the chemo experience. Later i also became nauseated from the smell of the hand soaps they had in the bathrooms. Well I though, so far so good, now I can use the four hours to read or play my iPod; 4 hours later I wake. The other meds they put into you during chemo sessions, like the steroids, cause you to get really sleepy and you tend to sleep for the whole experience until you have to pee. Peeing with tubes coming out of your chest and strapped to your arm while in a drugged fog is interesting; and the urine tends to change colors, at least for ABVD. My best friend in the whole world took me to most of my sessions and they sat with me the whole time; sometimes I was able to shoo them away to enjoy a breakfast or activity while I just slept. It bothered me that they just sat there bored out of their mind but filled with worry; this might be the last experience they do with me. Going through multiple sessions, depression started to occur for me.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  3. 3
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Depression/Anxiety

    Side Effects

    Knowing what depression feels like, I could feel it coming on and only after 2 sessions of chemo. I asked to be placed on some form of anti-depressant. Was prescribed Lexapro; which surprisingly worked well for me. After I was past the depression, which lasted just through the time it took to complete my treatments of six months, I experienced weight gain and that made me depressed again but I dealt with fat better than cancer.

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  4. 4
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    White cells dropped rapidly and I had to skip my third chemo session; was given a script for a white cell boosting drug, self injected into the fat tissue for four days. After almost a month I started chemo again, inject self for four days and with two weeks between sessions the medicine let my count get high enough for another chemo session and another round of white cell go go juice. Rinse and repeat until I was done, late June 2006.

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  5. 5
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Fatigue (tiredness)

    Side Effects

    With 2 treatments behind me I started to experience fatigue, but this is fatigue more than any fatigue you felt before. Start the day fine but after an hour of work you want to sleep for the rest of the day; I barely made it through my work during the days following a treatment. The second week after treatment was not so bad but after treatments I had issues with fatigue for over a year and a half later; doing something creative with my mind I was finally able to burn away the fatigue. I am still having attention issues and my ability to read for long periods have caused me some problems when I want to learn new things or read interesting novels. I can no longer stay focused on reading one book for long before I drift off to sleep.

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  6. 6
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Hair loss (alopecia)

    Side Effects

    After only two chemo sessions my hair did not wait to fall out; bits of hair in my brush, globs on the pillow and more in the shower. I looked funny but it was not all falling out just yet. I did not wait for the hair to remove itself, my neighbor was kind enough to help shave my head in mid. Feb. 2006. The next time I would shave my head was in March, so there was still some growth but not long after my sixth chemo session that most, if not all, of my body hair was gone. Not a single eyelash, eyebrow, arm hair, knuckle hair or nose hair was left; it was nice to not worry about body hair but never did I think I would miss the little stupid and ugly nose hairs I used to have. You should feel lucky to have your eyebrows and nose hairs; there is so much dust those hairs keep out is amazing. The nose hairs also help you know when you have a runny nose, and my nose was like a faucet when it dripped with snot; dribble everywhere.

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  7. 7
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    7 more chemo sessions, lots of sleeping and stay at home most of the time.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  8. 8
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Diagnosed

    Oh No

    First noticed this lump in my right neck sometime in 1999 while looking in a mirror as I tilted my head back to look at my makeup. Could not do anything about it without health insurance but eventually in 2000 I started a new job position at work and once insurance benefits began I was able to see a Dr. about the lump. The lump was needle biopsied but results came back as normal lymph-node tissue. First tested in March of 2001. 2005 rolls around and i still have that larger lump in my neck, needing surgery in Aug. I had to go through an extensive physical to ensure I could withstand the operation. Had the lump needle biopsied again, same inconclusive results; this time it was Feb. 2005. After my life altering surgery in Aug. I decided I would try to resolve other medical issues; I was suffering from nasal polyps and had difficulty breathing through my nose. Made arrangements and set the surgery for Nov. 30th, 2005; surgery went fine, polyps took 15 minutes to remove and 3.5 hours to remove the enlarged lymph-node in my right neck. I was so happy to have that ugly lump finally removed. Healing and about 2 weeks later I go in for follow-up visit for nasal bandage removal; also given biopsy results from the lymph-node; this occurred on Dec. 9th, just days away from my birthday. Sitting in the soft faux leather ENT exam chain I was told the results of the polyps were benign but the lymph-node was tested to be malignant; Hodgkin's Lymphoma I was told, and this flew over my head. OK, I have a condition/disease, give me a prescription and I will be OK right? Everyone was quite, the look on everyone's faces was horror but everyone's reaction to me interacting with them was stoic. They just said what they needed to say and nothing more. I began to feel sick, something is really wrong; I started to break down into tears but before I could cry out-loud i ran from the office and into the ladies bathroom. Looking into the mirror I screamed, why me and the tears would not stop. I do not know how long I was in the bathroom but i feared my life was over and everything I did to that point in time was all a waste. Quickly I was assigned a cancer center and an oncologist. Saw the oncologist shortly after my diagnosis, I think the next Wed. The cancer Doc ordered a port to be implanted and soon I had a port implanted on the 28th. Multiple scans were performed, CT and PET scans. My treatment plan included 12 rounds of chemo and also radiation treatment. Barium is nasty; chill the stuff cold, it is less gross cold.

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  9. 9
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    External radiation

    Radiation

    Radiation was easy enough, took very little time to do except the first day when they have to line the machine up with the areas to be treated. If you are able to have a mask made, then you can throw it away when you are done with treatment. i used to want the tattoo dots for aiming points but now that i think about it I am glad I dont have them since I would want to disguise the dots in some other tattoo; but I am still curious about getting a tattoo. Radiation seemed painless, at first. Once you get about 5 sessions down, different skin changes start happening and your mouth/throat can even get burned; mine did. I had severe mouth problems, it hurt like XXX. They give you a mouth rinse/gargle and pain pills to deal with it. The liquid is made from some mysterious(three ingredients) that taste like the worst thing you ever had in your mouth but its supposed to make things feel better. I could only use it once or twice it was so bad. i just used the pain pills to help relieve my mouth/throat.

    Painless Experience: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Taste change/loss

    Side Effects

    Well after 17 sessions of 3050 RADS, I no longer have some of my saliva glands or taste buds. I can not taste sweet things and many things do not have much flavor in them so I end up using lots of salt and like to eat spicy things more. If I was given a choice I would skip the #$%^&#$ radiation because it messed me up more than the chemo; at least from immediate physical side effects.

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  11. 11
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Mouth dryness

    Side Effects

    As i mentioned in my radiation treatment I experienced mouth/throat pain, loss of saliva and later I mention loss of taste.

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  12. 12
    • Davina
    • Experience with Lymphocyte-rich
    about 5 years ago
    Davina's Avatar

    Lots of more stuff to add

    Procedure or Surgery

    I have lots more to add but running out of time for now. Just want to say... There are more visits, annual tests, more visits, dealing with taste loss, dealing with continual visits with an oncologist for the rest of my life. Two visits per year now, about 6 years after first diagnosed and currently in remission. Was told that I will probably develop some life altering side effects in about 20 years so thats what i get to look forward to I suppose. Hopefully I can pursue some dreams and not worry so much about stupid things. Still dealing with healing issues, not healing as fast as i once did and when I get a cold/flu it becomes very serious. Oh well, will need to edit all of this more later.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments