Cytoxan Taxotere Chemo Ladies- February/March 2013
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kli, glad your thrush is clearing up! One less thing to have to deal with is a big success:)
audra, wow, sorry you are having so many issues with MO. I got a 2nd opinion upon my DX, but don't think it's too late to do that now at all. You HAVE to be confident and comfortable with your medical team. It is crucial to your recovery. We all deserve the best of care and respect. Don't short change yourself. Good luck with your decision. I know it's not an easy one.
momat, nice that you could sleep in!
thanks melrose for the good info~
welcome warriorwoman!
((HUGS))
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Another question I have is: my MO doesn't check my breasts or lymph nodes and never has done exam...my friend said hers does....does yours??
I am NOT totally confident in him and also don't want to add to my stress...not sure what to do.
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audra, the first MO I had acted like he was scared to touch me....hence, the 2nd MO! She has not done a breast exam, but my breast surgeon does. My current MO checks lungs, throat, heart, vitals, etc., every time I see her. I am very comfortable with my MO. She is open to my questions and happy to spend as much time as needed answering them. I never feel rushed or brushed off. I feel like we are on the same page and that she is genuinely concerned about my health and well-being.
((HUGS))
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My onco checks my breast and UMX area at every visit. I asked her if I needed to have an annual check up with the BS, and she said that she was in charge of my breast/UMX area. I know that I can still have my BS check me if I want. I also get a breast check when I see my gyno at my annual appointment.
Audra.... if you don't feel comfortable with your current MO, it is fine to find another one. You are not the first person to change MO's while having chemo, nor will you be the last. You have to remember that your relationship with your MO will be a long term one and you need to be able to feel comfortable and be able to trust the physicians and medical team. I know you may be a little hesistant and frightened to make a switch but if you don't feel like you are getting the kind of care that you want, then it may be time to switch.
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Pat, you are right, it's amazing how all MO's are different. My MO does a physical exam every time I see her - pre recurrence checking breasts and lymph nodes under arms and along collar bones... Along with all the standard vitals. CBC also with every visit. I can tell you that my recurrence would never have been spotted at early as it was if she didn't do the physical exam!! With my first surgery, I only saw my breast surgeon once- one week after my surgery. I have an appt with my current BS for August but I am undecided if I will keep that appt or not- not sure the value/necessity in seeing he BS now that there are no more breasts... Anyhow, MO checks foobs now and lymph nodes with every visit. Even my nurse practitioner checks at least the lymph nones with every visit.....
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Wow, what a difference there is in oncology practices. Mine has never done a physical exam, I've never seen her except fully clothed. When I go in the staff checks my vitals. I get blood work done right before my infusion, that's it. I have seen the Dr: once back in September to discuss options, right before my first infusion, when I had an emergency infection, before my second infusion, and am scheduled to see her before my fourth. That's it. When I have questions I call the nurse. Reading about how much care some of you are getting, I feel sorta neglected!
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audra67, Absolutely, you have absolutely every right to change MO's. My MO does check my lungs, nodes, breasts at each visit. Unfortunately, I go to a small satellite office and they don't offer mental health counseling and nutrition,which I clearly feel I need. I suspect, if I asked, they would definitely provide resources, though. Your MO has no right to make you feel your needs are not important or warranted. Listen to yourself. Trust yourself. momat927
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my Mo has never checked breasts or nodes. Nurses check vitals and she checks any symptom areas like mouth for sores or neuropathy.
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I recall a movie years ago with an arrogant doctor who was diagnosed with cancer. Suddenly, his entire outlook on life, his own self and his compassion for his patients and the other people in his life did a complete 360. I look for expertise and the willingness to communicate effectively. I don't require sugar coating but if I ever needed high quality care it is now. If you switch doctors midstream just make certain the new practice has all your records.
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I think I should clarify. My MO always does the physical when I actually see him, but I do not see him at each chemo round! I have seen him between rounds & am supposed to see him at the next one in a few weeks. I also have some spots on my lungs that are being monitored. I am not letting myself dwell on those. I can only handle one hurdle at a time.
Warrior, I just saw that movie yesterday!!!!! I cried during it.
Sometimes, I still feel very isolated from the medical professionals who are supposed to be my "team." I suspect seeing a counselor/therapist who knows about bc might fill in the gaps for me. I am seriously thinking about it, though severe budget constraints may limit my access.
Xo
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Momat - I just realized you're in Blue Bell. I lived in Ambler & North Wales for years. Insurance pays for mental health treatment. I know I have PTSD symptoms from this. I am an LPC and CADC. Having practiced for many years in your neighborhood, there are many good therapists in the area. However, it really has to be someone who gets the whole cancer thing. The social worker at your treatment facility should help with a referral. Based upon professional observation, I cannot recommend the public programs in the area. NHS is a big one. Staff are amateurs and the facilities put people on conveyor belts. I too would be worried about the spots but I am so hoping they're nothing. What agony. After my diagnosis I assumed I had cancer everywhere. I went to my gyno and had a transvaginal ultrasound. Waiting for the results was like waiting for the breast biopsy report all over again. I'm heading to a dermatologist soon to rule out skin cancer. I'm due for a colonoscopy this summer. This is the trauma of our experience. Every single symptom is assumed to be cancer. I suspect this fear will be with us for a long time.
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Warrior! Yes, our paths may have even crossed!
I know I can find someone from my network of friends and associates. It is a matter of my own ambivalence. & I am on medical leave right now so find the whole future of my health insurance coverage a tad daunting. I know what you mean about "public programs" though I have friends who are wonderful therapists & have put in their time at the fee for service agencies.
I think you are right about the chronic fear.
My mother, father, aunt, and many family members have died of some kind of cancer. My siblings have had or have cancer. I always felt I was not going to be hit because I never smoked. I now think differently. I will probably get the genetic test for the bc/ovarian cancer gene.
Change of worldview anyone?
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Warrior, by the way, I raised a child here, but before the dx, was already beginning (slowly) to clean out the house and prepare to downsize. I landed in the PA suburbs almost by accident!!!! This accident lasted a long time.....
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My mother died of cancer when I was a child and I always assumed I would too. Today I think I will move beyond what my mother was unable to conquer. I am facing my worst fear.
I am not an expert on medical leave employment issues but here is my understanding. BC is covered by the ADA. After sick leave is used up disability kicks in. You don't receive your full pay and are responsible for paying for your benefits. This is how it was explained to me by my employer. I plan to stay out through chemo and hope to return shortly after. If I am managing OK, I may ask if I can work part time. There is information here on BCO about employment and financial issues. The one thing I would strongly suggest is to keep the best insurance you can afford. I am grateful to being able to receive quality care at Penn rather than being forced to go to the only place that accepts my insurance and provides questionable care. Most private practitioners in your area offer flexible payment options.
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oh you are at Penn?? My second opinion was Kevin Fox. I loved it there but Abington was closer.
Yes, that I my basic understanding, but I will definitely explore the employment/ financial discussions here. Thanks!
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Small world. I'm seeing Fox for a 2nd opinion on Thursday regarding some oddities on a pathology report. I may go local for the chemo but for surgery I wanted the best surgeons I could get and I now live in a very rural area. MSK is actually closer but that would mean the madness of NYC.
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Audra - are you in Dallas? I'm at Baylor Clinic in Houston and they do have all of the ancillary staff to cover any issues.
My MO does a complete physical before EVERY chemo - including feeling gut, feet, ENT, full breast & axilla exam. The only thing he doesn't check is the crotch, although he did look at my tail bone one time when I had the beginning of a bed sore. Now that I'm moving towards Herceptin only I believe I'll only see him every 6 weeks instead of every 3 weeks, but that will depend on rads I'm sure.
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Warrior, what part of Jersey do you live in? I am in Bergen County...
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Amazing how much difference there is between MOs, as several have said. My MO has never examined me, except to look at some itchy bumps along my hairline. My BS is leading my team, and she brought in the PS for my surgery and referred me to the MO. She talks often with both of them, so I have felt very confident that the care was coordinated. She will also be ordering mammos and MRIs for follow up for several years, so I will continue to see her periodically. I have chosen to go to a different RO than the one she referred me to just for the convenience of being close to home -- but all the records go into electronic files that are seen by all, so I still think the care is pretty coordinated. My BS is affiliated with a large breast center (part of a cancer pavillion at a large regional hospital) where I have had my mammos for years. My biopsies and MRIs and surgery were all done there, but my MO, PS & RO have offices and treatment facilities near another small hospital that is close to my house.
Audra -- you should switch if you aren't comfortable.... This is a long term relationship with your health care team, and you need to feel that they work WITH you, not against you!
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Virginia - Central NJ/ Hunterdon County / Frenchtown near the river. I love it here.
Ladies - One of my greatest fears is chemobrain. I am wonder what cognitive changes you've experienced from Cytoxan, Taxotere.
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Wrenn - I am terribly distracted from this BC and my normal concentration if off even before chemo. You had just one treatment. I was hoping it would not be so potent as to cause cognitive impairments so easily. Yes, it could well be the stress.
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Wrenn & Warrior & All - I know that stress clearly impacts memory & concentration & we are surely stressed, but I am experiencing other issues too. I would bet research will show some short term cognitive issues. I am not sure how to describe this yet but my thinking is sluggish & I am having some word finding issues. I doubt we need to worry about long term effects. The brain has plasticity. ( self-disclosure: I have a degree in Clinical Neuropychology) I am definitely not an expert but am kind of both experiencing and observing what is happening to me. I also cry incredibly easily and feel more emotionally impulsive. Still, I wouldnt worry about this part. I have a feeling meditation and exercise will help if I could get myself off my perch on the couch.
Warrior- I visited Frenchtown not long ago because someone told me it was a tight knit community and a great place to live & I like to explore. It was a lovely visit.
Be well today Sisters.
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Thanks for sharing your stories. I have always had the same fear, as my Mom was dx'd with BC when she was 60. My siblings and I are all planning on travelling from Wisc., Wash. and Tx. to Tucson at the end of the month, to celebrate her 80th birthday. Praying that I am feeling up to going! My half-sister was dx'd with BC at age 27. She is now 42! No other cancer in my family. I tested neg for BRAC.
I did forget to put my crock pot of stew in the fridge the other night before going to bed! GRRR....but, other than that, I don't think my memory has failed me, other than the normal "where did I put my glasses" stuff...
I think my emotions are heightened as well. BC is not for sissys!
Stay warm ladies~
((HUGS))
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Thank you Keepthefaith for sharing about your family members who are long time survivors. It gives me and others great hope and comfort.
As for chemobrain, I can't say that I notice anything different. Sure, the emotions are a little wonky at times but that is probably from going through chemopause and then through menopause. I do things to help stimulate my brain ( crossword puzzles, play on line puzzle games, exercise, read, etc) and also try to sleep and eat well. I also use calendars, sticky notes and lists to help me remember things which I did before I was diagnosed. I know that while I was in chemoland, most gals I know kept talking about chemobrain. Maybe I'm one of the lucky ones whose brain didn't get significantly impacted by the chemo or at least, I don't think it has. Who knows.... maybe I have it and don't realize it... lol..
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My experience, so far, with chemobrain is that in my first week post tx my brain is a slug, and just as with the other SE, it dissipates as the weeks progress between treatments so that at the end of 3 weeks, it is not too noticeable. Therefore, WarriorWoman, it isn't something to really fear. It's just part of the SE that are endurable.
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hi ladies. I've been reading along but this last chemo has kicked my butt. I am wiped. I do not think I am experiencing chemo brain but I asked the cancer center that I'm affiliated with about it and they sent me the contact person. I will be contacting her soon, I would look to know the difference between just stress and a clinical diagnosis of chemo brain.
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think I may be the oddball on this one. No increase in being emotional and no tears at all.
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At midlife I am already forgetful. I already write lists and reminders. The thought of it worsening is a concern. Verbal ability is one of the areas the researchers have identified.
Momat - I am certainly hope our brains bounce back. There is research indicating possible long term effect and the question has come up about chemo brain for BC patients being an accelerator of Alzheimer's.
One day at a time.
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Ladies - I don't know if this was mentioned here but I purchased a product that I was told is usable during chemo and prevents loss of lashes and brows. Some thinning perhaps but not bald eyes. The manager at the Faith and Hope shop told me they've been selling it for 4 months and so far not one person has lost her lashes or brows. I started using it today in preparation for starting chemo next week. It's called Brian Joseph's Lash and Brow Conditioning Gel. It's all natural and unlike Latisse, it is designed for use before, during and after chemo. The tube cost me $40 and it was suggested that I buy 2 to start. I'll keep you posted as per its effectiveness.
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Warrior Woman, I had what seemed like chemobrain during my infusions. I felt kind of fuzzy and had trouble following what was being said at meetings. It seemed like I was always a step or two behind. I also had trouble finding words during that time. I had to take a break from playing Words with Friends because I couldn't come up with any words! However, I am 3 months past chemo now and feeling so much more clear. I was at a meeting and found myself thinking, Wow, I'm actually keeping up with this conversation. Maybe you won't feel any of this, but if you do I just wanted to let you know that it won't last forever!
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