Ejourneys' Journey with Mucinous (or Colloid) Carcinoma

  1. 1 Procedure or Surgery Icon Procedure or Surgery
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Side Effects Icon Side Effects
  4. 4 Decision Point Icon Decision Point
  5. 5 Decision Point Icon Decision Point
  6. 6 Decision Point Icon Decision Point
  7. 7 Procedure or Surgery Icon Procedure or Surgery
  8. 8 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  9. 9 Side Effects Icon Side Effects
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  13. 13 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  14. 14 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  15. 15 Side Effects Icon Side Effects
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  25. 25 Side Effects Icon Side Effects
  26. 26 Celebration Icon Celebration
  27. 27 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  28. 28 Celebration Icon Celebration
  29. 29 Side Effects Icon Side Effects
  30. 30 Side Effects Icon Side Effects
  31. 31 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  32. 32 Side Effects Icon Side Effects
  33. 33 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  34. 34 Side Effects Icon Side Effects
  35. 35 Radiation Icon Radiation
  36. 36 Side Effects Icon Side Effects
  37. 37 Celebration Icon Celebration
  38. 38 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  39. 39 Celebration Icon Celebration
  40. 40 Celebration Icon Celebration
  41. 41 Celebration Icon Celebration
  42. 42 Celebration Icon Celebration
  43. 43 Side Effects Icon Side Effects
  44. 44 Celebration Icon Celebration
  45. 45 Side Effects Icon Side Effects
  46. 46 Oh No Icon Oh No
  47. 47 Procedure or Surgery Icon Procedure or Surgery
  48. 48 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  49. 49 Decision Point Icon Decision Point

Patient: Breast Cancer > Mucinous (or Colloid) Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 3 years ago, Female, Age: 58, Stage I, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
    Ejourneys' Avatar

    Lumpectomy

    Procedure or Surgery

    No pain meds needed, not even ibuprofen.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
    Ejourneys' Avatar

    Sentinel lymph node biopsy

    Procedure or Surgery

    Only side effect thus far is a seroma at the incision site, with pressure but no pain.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
    Ejourneys' Avatar

    Seroma at the incision site of sentinel lymph node biopsy

    Side Effects

    Noticed swelling about a week following surgery. Currently I feel pressure but no pain. Update: As of April 18, swelling has decreased almost completely. I'm very pleasantly surprised, since I read that a seroma can last for far longer.

    0 Comments
  4. 4
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
    Ejourneys' Avatar

    Take care of dental work prior to treatment

    Decision Point

    I'm trying to head off any potential complications between dental work and cancer treatment. Specifically, I read that hormone therapy can lead to osteoporosis and that meds to treat that (bisphosphonates or denosumab) can potentially cause osteonecrosis of the jaw, especially if dental work is done during treatment. Fortunately, my bone density is good and my oncologist said that if osteoporosis were an issue it would take some time to show up. I've needed dental work for a while, so I figured this is the time to take care of it.

    0 Comments
  5. 5
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
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    Choice of radiation center

    Decision Point

    I have two local radiation centers to choose from. Doctors at both seem to have comparable experience and have received very good reviews at Vitals and Healthgrades. The main advantage of one is that it is closer to home, actually within walking distance. The advantages of the other is that it has more doctors (i.e., a deeper bench) and seems to have more support services, including transportation if I need it. It is also the location of my breast cancer support group. I've decided to go with the facility that is farther away.

    0 Comments
  6. 6
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 3 years ago
    Ejourneys' Avatar

    Chemo or no chemo?

    Decision Point

    I learned on April 17 that my recurrence score is 22, which is intermediate. Before I see my oncologist next week, I am reading up on research concerning the interplay of hormone therapy (including tamoxifen versus AIs), radiation, chemo, and other factors. I want to know what questions to ask the oncologist and I want to make an informed decision, because an intermediate score is iffy with respect to chemo. Update: oncologist recommended chemo when I saw him on April 22 and gave me until May 1 to decide. After more reading and talking with people, I chose to go ahead with chemo and I let his office know my decision on April 25. Prior to my May 1 appointment, I have a MUGA scan on April 28. My heart appears fine (ECG was "rock solid normal"), but heart disease runs in my family.

    2 Comments
  7. 7
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    So far, so good (I came out of surgery a few hours ago). I have a bit of neck soreness, but not enough for painkillers.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  8. 8
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Posted about 3-1/2 hours after end of first chemo infusion: I feel good but with weirdness setting in. Was able to drive home. Am slightly headachey. Stomach feels a little off, but no real nausea (lots of burping). Bowels are in will-they-or-won't-they mode. (Says my partner, who has MS, "Welcome to the club.") Drank 12 cups of water yesterday and am close to that now. Lay down for a couple of hours after I got home. I feel a slight body tingle. Taste of water seems slightly changed, though not unpleasant. Both the tingling and the taste change seemed to lessen once I started moving around. Had a peanut butter sandwich after I got home about 3 hours ago and am about to try some more food. Edited to add that the chemo drugs here are Adriamycin/Cytoxan.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    2 Comments
  9. 9
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Weight gain

    Side Effects

    Gained 5 pounds overnight, from day 1 to day 2 of Cycle 1 chemo infusion, likely from a combination of constipation and edema. Dropped back a pound between day 2 and day 3 (today). Update: Weight took about a week to return to baseline. The same thing happened after Cycle 2 infusion: a 5-lb. gain overnight, then a week to return to baseline.

    4 Comments
  10. 10
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Constipation

    Side Effects

    Mild constipation; time between pre-chemo and post-chemo BM was 56 hrs 50 min. Pre-chemo BM is typically Type 4 on the Bristol Stool Type Scale; post-chemo BM was Type 3. At the 26-hour mark I drank a smoothie made with prunes, banana, applesauce, yogurt, and water.

    0 Comments
  11. 11
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Swelling (edema)

    Side Effects

    Some edema in feet and calves, not painful. Have been sleeping with feet raised on a pillow, sitting with feet raised and uncrossed, taking movement breaks.

    0 Comments
  12. 12
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Nausea/Vomiting

    Side Effects

    Nausea is mild: queasiness with a lot of burping. Alleviated with sips of water, small bites of food, movement, and slow, deep breathing. Have been taking Emend and have Ondansetron to take as needed once the Emend pack is finished (today is my third and last pill).

    0 Comments
  13. 13
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Nausea medicine

    Drug or Chemo Therapy

    Am taking Emend; today is the third and last pill in the pack. Nausea has been mild.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  14. 14
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Received Neulasta shot on May 9 (day after Cycle 1 chemo infusion). Felt more tired than usual, but I also did errands that day. Have been taking Tylenol and Claritin as per doctor's orders to counteract the shot's side effects.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  15. 15
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Fatigue (tiredness)

    Side Effects

    Am experiencing mild fatigue from chemo and now also from Neulasta. (Today is Cycle 1, Day 3.)

    0 Comments
  16. 16
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Eating problems (anorexia)

    Side Effects

    Food intake on days 1 and 2 of chemo Cycle 1 both ran 300+ net calories under my maintenance goal (1600 calories), but were still above 1200 calories. Calorie consumption on Cycle 1 day 3 ran 200+ below maintenance.

    0 Comments
  17. 17
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    After waking from nap around 10 p.m. on Cycle 1 day 3, felt strong tingling in left ring and pinky fingers down to wrist. Strong tingling lasted only a few seconds, followed by mild tingling and numbness that lasted about two hours. This differs from my carpal tunnel, which affects my other three fingers. Update: After Cycle 2 infusion I experienced a different neuropathy. This time it occurred in my leg at the site of a compound fracture from 1966, along with minor bone pain (no need for an analgesic). Was told by ARNP that chemo can affect an old injury this way.

    1 Comment
  18. 18
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Heartburn

    Side Effects

    Experienced heartburn (which I don't normally experience) for about three hours on May 13, 2014. During this time, swallowing anything (food, drink, saliva) caused pain that seemed to localize about two inches to the right of my xyphoid process. Update: Heartburn worsened after my second chemo infusion on May 29. ARNP prescribed Prilosec, which provided relief.

    0 Comments
  19. 19
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Hair loss (alopecia)

    Side Effects

    My scalp felt more sensitive on May 26 (day 19 of chemo Cycle 1) and rubbing my head caused my hair to start to fall out. At least half my hair fell out with gentle rubbing alone, leaving bald spots. I then took my scissors and cut off as much of the rest as I could, so I am now pretty bald with patches of fuzz. I had been expecting this, so I'm happy it's mainly done with. Watching it all happen was pretty cool, but I'm used to having short hair to begin with. Update, Aug. 29, 2014: Now getting Taxol (have finished with Adriamycin/Cytoxan). Eyebrows and eyelashes have thinned, as have nostril hairs. Taxol is also giving me a Brazilian wax without the wax. :-)

    0 Comments
  20. 20
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Hot flashes

    Side Effects

    Day 1 of chemo cycle 2, had intermittent sweating -- not much, but enough to be noticeable.

    0 Comments
  21. 21
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Mouth dryness

    Side Effects

    This has been fairly constant, with minimal effect during the last days of Cycle 1 (so far) and greatest effect following sleep. Remedied with frequent sips of water and swishing water around my mouth. Update, Aug. 29, 2014: Mouth dryness decreased near the end of my four Adriamycin/Cytoxan infusions and has increased again under Taxol after the fourth infusion. I again need to drink water in the middle of the night.

    0 Comments
  22. 22
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
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    Vertigo

    Side Effects

    So far I've had a couple of short bouts of vertigo, one while sitting after first chemo infusion, one while supine after second chemo infusion. Sitting up and sipping water helped relieve the second bout of dizziness.

    0 Comments
  23. 23
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 3 years ago
    Ejourneys' Avatar

    Taste change/loss

    Side Effects

    My mouth has developed a metallic taste, especially during and after my second chemo infusion on May 29, 2014. I taste it most when I am not eating. Food helps detract from that "off" sensation. Update, Aug. 29, 2014: Adding lemon juice to my water (begun while still getting Adriamycin/Cytoxan, now continuing under Taxol) makes the water much more palatable.

    2 Comments
  24. 24
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Elevated heartbeat

    Side Effects

    This happened only once, following my third A/C infusion. In the middle of the night, my heart rate ramped up to an estimated 126 bpm for more than four hours. ARNP linked it to Decadron, the steroid I receive with my infusions. Dosage was cut from 10 mg to 5 mg.

    0 Comments
  25. 25
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Swallowing problems

    Side Effects

    Copied from my side effects report for the first week after my third A/C infusion: "While lying down for overnight sleep, I had to concentrate briefly on breathing and swallowing, particularly the control of my windpipe (pharyngeal?) muscle, which seemed to close a little. I could breathe and swallow without difficulty, but I had to be mindful of it. This resolved in a few seconds. To be safe, I spent the first part of the night sleeping partially upright." ARNP linked this to Emend (anti-nausea drug).

    2 Comments
  26. 26
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Completed first phase of chemo

    Celebration

    On July 10, 2014, I received my fourth and last Adriamycin/Cytoxan infusion, clearing the way for me to move on to the chemo drug Taxol. Oncologist's assistant said Taxol is "a walk in the park" compared to A/C.

    4 Comments
  27. 27
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Today (July 31, 2014) I had my first infusion of Taxol. I have 12 weekly infusions of this and will then be done with chemo after mid-October. Am spending the day resting.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  28. 28
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Decrease in meds

    Celebration

    More good news from the chemo front. No more need for Neulasta (to rebuild immunity) means I can stop taking Claritin and Tylenol (to combat Neulasta side effects) -- that hadn't been specified yesterday so I called today to confirm. Also, I no longer need to take Emend (anti-nausea). I cancelled next week's delivery, but I remain in the patient assistance program in case anything changes. Finally, in anticipation of losing my eyebrows (and all my other remaining hair) under Taxol, I ordered a little something special. Will elaborate when it's time to take pictures. #tease

    1 Comment
  29. 29
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Anemia (low red blood cell counts)

    Side Effects

    I don't feel particularly anemic, but my blood work says differently. My oncologist is ordering an anemia panel.

    2 Comments
  30. 30
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    I'm trending toward neutropenia. Oncologist is keeping an eye on it. Due to my type of treatment, I've been told that Procrit is inappropriate as a remedy.

    0 Comments
  31. 31
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Anemia medicine

    Drug or Chemo Therapy

    Side effects and impacts are really TBD. My ARNP started me on Fusion Plus for anemia, particularly because my iron saturation percentage has taken a dive.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  32. 32
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Nail Changes

    Side Effects

    Noticed during and after my fifth Taxol infusion: purplish discoloration at the base of my fingernails. Toenails have become brittle.

    2 Comments
  33. 33
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Anemia medicine

    Drug or Chemo Therapy

    Instead of the Fusion Plus I had been given last week, I today received IV iron with my regular chemo. I had an adverse reaction after the syringe push: faintness, nausea, difficulty breathing, and cramping. Chemo nurse was right there with IV Benadryl, which toned down the reaction in a few minutes and gave me a bit of a nap. I'll have another iron IV next infusion. I've been told I'm unlikely to have this kind of reaction, but we'll be ready with Benadryl just in case. Update: I was given Benadryl in advance of my next iron infusion (Feraheme). The infusion was stopped halfway through when I began to get a reaction. After a 20-minute rest and a Benadryl push, I received the rest of the iron with no problem.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  34. 34
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    almost 3 years ago
    Ejourneys' Avatar

    Bleeding

    Side Effects

    I've had two nosebleeds while on chemo (I define a nosebleed as requiring me to tilt my head back to make it stop). Since my last one on Aug. 25, the back of my right nasal passage has shown bright blood, with occasional spotting when I gently blow my nose to clear mucus. Today's spotting (9/16) was pretty substantial, so I have started wearing a face mask to keep my nasal passages from drying out. If the bleeding becomes a problem, my oncologist will refer me to an ear/nose/throat specialist to cauterize the blood vessels.

    14 Comments
  35. 35
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    External radiation

    Radiation

    I have just started radiation (Oct. 20, 2014) and will update as needed. Am getting intensity-modulated radiation therapy (IMRT).

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  36. 36
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Skin changes

    Side Effects

    Areola and nipple of irradiated breast are darkened. Underside of breast has what looks like heat rash that has darkened further. Changes began approximately 3 weeks into radiation treatment. No discomfort until week 5. Am dealing with blistered areola after 28 treatments.

    1 Comment
  37. 37
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Finished treatment

    Celebration

    Had the last of my 33 radiation treatments on Dec. 5, 2014 (following surgery and chemo). This marks the end of my active treatment, nine months and one day following the day of my diagnosis.

    0 Comments
  38. 38
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Hormone therapy

    Drug or Chemo Therapy

    I started taking generic Arimidex (anastrazole) on Dec. 5, 2014. Endocrine therapy will continue for at least five (and likely ten) years.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  39. 39
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Return to strength training and planks

    Celebration

    I returned to strength training on December 6 and returned to planks on December 14. Am taking things nice and slow, but it feels great to be back. I had continued my aerobic exercise throughout treatment.

    0 Comments
  40. 40
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Remission

    Celebration

    Last week's PET scan showed no sign of cancer. :-)

    5 Comments
  41. 41
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 2 years ago
    Ejourneys' Avatar

    Anniversary

    Celebration

    One-year cancerversary today! (And what a year it was!)

    2 Comments
  42. 42
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 2 years ago
    Ejourneys' Avatar

    Blood work is normal

    Celebration

    All of my blood work on May 5, 2015 was normal for the first time since April 7, 2014.

    0 Comments
  43. 43
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 2 years ago
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    Bone thinning (osteoporosis)

    Side Effects

    Latest bone scan (May 18, 2015) shows osteopenia (not osteoporosis) in my right hip, so I've added stepping to my exercise routine. Says the Mayo Clinic, "Weight-bearing aerobic activities involve doing aerobic exercise on your feet, with your bones supporting your weight. Examples include walking, dancing, low-impact aerobics, elliptical training machines, stair climbing and gardening. These types of exercise work directly on the bones in your legs, hips and lower spine to slow mineral loss. They can also provide cardiovascular benefits, which boost heart and circulatory system health."

    0 Comments
  44. 44
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 2 years ago
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    First post-treatment mammogram is clear

    Celebration

    Had my first post-treatment mammogram on June 8, 2015. Was given the all-clear and told, "You look fabulous!" by the tech. :-) Radiologist has labeled the images "benign" with a one-year follow-up. My left (surgical/radiation side) breast was mashed three times. The first time hurt, but only a bit. The rest felt like the kind of mammo I'm accustomed to.

    1 Comment
  45. 45
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    about 2 years ago
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    Carpal tunnel syndrome exacerbation

    Side Effects

    I distinguish this from peripheral neuropathy; my ring and pinky fingers remain unaffected. I've had CTS since the early 90s. Flare-ups have increased in both frequency and severity since I started on anastrazole. Oncologist has confirmed that this is a SE (i.e., this is not just a regular progression of my CTS). I now keep a flare-up log along with my other recordkeeping. Activities disrupted by flare-ups include but are not limited to writing, typing and other computer work, food prep (especially cutting), driving, and certain forms of exercise. Flare-ups can also significantly disrupt my sleep. Both hands have CTS; the right hand is worse. Some amount of tinging and numbness now occurs in the right hand 24/7.

    1 Comment
  46. 46
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 1 year ago
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    Blood clot from port (DVT)

    Oh No

    Went to the ER on Sunday after swelling in NON-lumpectomy-side arm and breast, but on the same side as my port. Ultrasound showed blood clot. Port was removed on Tuesday; I was finally discharged today (Wednesday). Now on blood thinners and have a full doctor dance card again. Glad to be home and back on the site!

    0 Comments
  47. 47
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 1 year ago
    Ejourneys' Avatar

    Port removal due to blood clot (DVT)

    Procedure or Surgery

    I've been told to not lift anything heavy for about 6 weeks, so that puts a small crimp in my style. Surgery was done in the hospital because I was already there to be treated for the clot. That meant hospital rules, which meant full Monty pre-op and OR with "moderate" anesthesia, rather than what would have been a much simpler office procedure (without the clot). Surgeon told me the port came right out with no problem. Getting rid of the clot itself will take a bit more time.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  48. 48
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 1 year ago
    Ejourneys' Avatar

    Xarelto (blood thinner, to help clear blood clot caused by chemo port)

    Drug or Chemo Therapy

    On Jan. 10-13, 2016, I was hospitalized for a blood clot in my subclavian vein. Cause of the clot was likely irritation from my chemo port at the juncture of my subclavian and internal jugular veins. I am on Xarelto 15 mg 2x/day for about 6 weeks and will then switch to 20 mg 1x/day. Will get a follow-up ultrasound in March.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  49. 49
    • Ejourneys
    • Experience with Mucinous (or Colloi...
    over 1 year ago
    Ejourneys' Avatar

    I need to decide whether to continue on endocrine therapy in light of my blood clot.

    Decision Point

    Saw my oncologist on 1/22/16. He agreed that my blood clot had been "provoked" (his word) by my port, which has now been removed. (He said there is a significant difference between when a clot is provoked and when it just happens.) However, the anastrazole I'm taking (and all endocrine therapy drugs) come with a slight risk of blood clots, so there is no surefire way to tell whether or not the anastrazole played any kind of role in this one. My cancer had been a relatively non-aggressive type, so between that and the possible risk of clots, my oncologist said that I might want to discontinue the anastrazole. He acknowledged that this is a hard choice to make. I'm info-gathering at this point, so that I can feel as comfortable as possible with whatever I decide to do.

    4 Comments