Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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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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I only had one treatment of cytoxan/taxotere (Nov. 25) and I am still a little stupid. I make a lot of mistakes and have a hard time remembering what I was saying etc. I wondered though if it wasn't from stress or at least that adds to it. It is really tough what you guys have endured and really takes it out of you in all areas I think. I do think it will come back once things smooth out a bit though. Hang in there.
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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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I'll also just comment about Brian Joseph's. Many people on other boards have had success with it. They may have lost some but definitely not all of their lashes and brows. I didn't use it but want to let you know that you might want to keep using it for a while after chemo. I lost almost all my eyebrows 8 weeks after I finished my last chemo!
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JG - I'm a college prof. and the thought of losing my ability to command the room is disheartening. I'll deal with temporary. Permanent will turn me into another piece of baggage with tenure and I dread that. It seems like the cases of full disability are far fewer. And yes, the instructions I received are to use the gel 2xs per day beginning a week before chemo and continuing after. I'm really bad at drawing on eyebrows.
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Hello Sisters. I have indeed read some reports about long term effects of chemo and predisposing one to Alzheimer's, but years ago I suffered a TBI which already accelerates that process. I can't let myself go too far into that fear again. I know, first hand, that keeping mentally active is imperative to counter these effects. Tomorrow night I meet with my writer's group. I suppose I will know pretty quickly if my response to the work shared is impacted.
I know this sounds corny, but after the TBI in 1984, It took three years to write again & though my writing voice had changed & I was afraid at first, it turned out to be surprisingly fresh. Hopefully, we will all be pleasantly surprised by any changes that come out of this! SC, let us know how it goes with your contact person. Xoxo.
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Thanks for all of your support with my wanting to change MO. I have decided now is NOT the time and maybe I was being 'over emotional'...I guess I would like examined every time and every little thing done that can be...but after thinking about it maybe I will just ask him about it. Instead of the stress of driving an hour each way and starting all over in this process. I will see how this last infusion goes and what he recommends for follow up screening. That will be my answer.
Meanwhile I have been out the last 3 days! Just riding in car, but I did make it to church! LOTS of people! It overwhelmed me and was so weird to be around people again. I felt insecure as I wore a beret type hat and felt I stuck out like a sore thumb...then these emotions! Some sweet people came to talk to us afterward as I was getting a water, and for the life of me I didn't know who they were! She told me she was still praying for me and I didn't know who she was! Turns out it was my husbands friend in bible study and his wife, they were some of the people that prayed for me after church weeks back when I was 'overly anxious' and upset and hadn't lost my hair yet, just starting chemotherapy. I felt like an idiot and got tearful !!! These tears that just appear are annoying to me! I HATE to cry in front of people! Anyhow I also felt sortof in shock being around so many people, which was odd to me...but I guess I have been at home - and on the couch quite a lot in the last two months...
Does anyone else look for 'anyone' when out that has a hat or turban/scarf or try to find 'anyone' else that has this going on? I seem to search for another....everytime I'm out.
Also got a new wig today and LOVE it! The other one I felt like a clown...will post a new photo tomorrow...makes me feel 'normal' again....unbelievable!!! love it!
Had to stop by Dr today, as I had arm pain and finger tingling/numbness and axillae numbness yesterday and today. I saw the nurse, she thought maybe a pinched nerve or something - checked port area = I was worried about lymphedema or blood clot around port...?? She was very nice and I felt good about decision to stay there...
Going to see my counselor again this week and had some serious prayer time with God myself and am trying to change my type A personality to a b or c...and trying to be ultrapositive and no more worries!!! Doesn't that sound great? hoping...
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Hello,
My MO checks my mx site, all my nodes, and my remaining breast every visit! I find it very reassuring !
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audra, this sounds GREAT & yes, I always scan a room for another bald woman!!!!
Everything you described sounds ABSOLUTELY normal, though I am not sure it's possible to always be positive or always blue, but can only speak for myself. Speaking only for myself, faith seems to give me the strength to ride the waves of both feelings. Keep finding your strength!!!!
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My MO has never been closer than 4 feet away from me either standing or sitting. I had a nurse do the initial 'measuring' of vitals and then a resident did a brief exam and the talk about what they intended to do with me. The MO came in for the last 5 minutes after the talk to ask if I had any questions.
Each subsequent visit was to be weighed by a nurse and then to talk to a resident about delaying chemo because of my wound. I did see the MO a couple of days before starting chemo for him to find out if I wanted to go ahead.
I saw him again when he decided that we couldn't continue with chemo. My friend has the same MO and thinks he is a genius because he is the head of the breast cancer tumour board and has done a lot or research and knows a lot. So, I accepted that he really didn't have to schmooze since he decided on the treatment and the friendly people did the interacting. :-)
Audra, I do tend to notice now when someone is wearing a chemo hat and I feel a brotherhood/sisterhood with them. In my own building I go bald to take out garbage or get mail and it is amazing how eyes are averted. No one mentions my bald head and they just seem really uncomfortable about looking at me if we chat. I was surprised last night though when a young (27 year old) man came into the elevator on his way to visit his mom. He used to live here and people thought of him as a loser because he quit school and didn't work and lived with his mom free until recently. I tried to make small talk and asked how he was doing but he just pointed and said "Ummm????" with a questioning look and he looked worried. I told him I had breast cancer and he looked like he was going to cry. It was the most authentic interaction I have had from anyone and I wanted to hug him. It was so sweet. He genuinely said "I am so sorry" and then just shook his head. I am not sure if he was thinking of his mom but I have always liked him so I really think he felt bad for me. I am usually very upbeat so was a bit thrown since I didn't want to seem so cheerful when he was sad.
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