2 questions

lindyjo · 10-21-2006, 10:23 AM

Hello Everyone,
I was wondering if anyone lost any toenails during chemo?? I lost 5! And of course it was during sandal season!! It wasn't very painful, just annoying and gross. My other question is about follow up tests after treatment. I see where lots of people on this site mention having different scans. My onc says other than periodic blood work and physical exams, there would only be scans or tests if I had symptoms. Does anyone know why some onc's do follow up tests and some don't?? That really bothers me because I went from being told the lump in my breast was nothing to Stage III cancer in 7 months! I had a mastectomy on left side in March, did 6 and 6 of A/C & Taxol and started Herceptin at same time as Taxol am currently doing 33 rads and will be on Herceptin until next July.
For me the hardest part is living every day knowing this horrible disease could come back. Don't get me wrong, I don't walk around oozing gloom & doom. I'm a happy person who enjoys life but that fear lingers inside. I look forward to corresponding with all of you. Today I am off for a few days in Vegas to celebrate my anniversary. It will be nice to get away from all the medical stuff for a few days, I just wish I had some hair!!!! More later.... lindyjo

Bev · 10-21-2006, 07:05 PM

Hi Lindyjo, sounds like we have the same onc. I'm stage 2 though. I guess their theory is if you don't have any symptoms and no elevation of markers in blood work, usually they won't find anything on scans. Many on this board are pushing for regular brain MRI as Herceptin doesn't protect your brain. I don't know the answer. I would think if the lack of scanning is causing you emotional distress, they should agree to do it to give you relief. Still have toenails, but I do recall someone else mentioning their loss. Good luck on your treatment. Bev

Mary Jo · 10-21-2006, 07:15 PM

Hi,

My oncologist also does not believe in scans unless symptoms warrant. I do tend to agree with her but everyone feels differently on that one. Don't get me wrong, if it were possible to "catch" cancer before anything "bad" could happen to us I would be all for scans as often as possible but unfortunately, there are no such guarantees. My oncologist explained it to me this way............................"there are just way too many false positives. You would be checking this and that and literally chasing after things that just aren't their (not cancer). The stress of it on the patient isn't worth it." She checks me over every 4 months at this point (finished my chemo Nov. 2005, radiation finished Feb. 2006 and herceptin finishes Oct. 2006) She checks my blood work - does a physical exam and asks how I am feeling. That's it. Honestly, me personally, I'd go nuts going through scans on a regular basis. I couldn't handle the stress of it.

Like I said, we are all different and all need different things. All doctors do things differently as well and we all need to find the doctor that suits our individual needs.

Good Luck to you and God Bless..............

Mary Jo

Linda · 10-21-2006, 09:42 PM

Dear Lindyjo:
My onc did decide to scan after I finished treatment and I am now the poster girl for false positives, and know why so many oncs DON'T scan. Twice I was told that something had likely spread to my lungs, and that a lung biopsy was upcoming. And twice, further scans then showed NED. So, besides the cost and time of the scans, needless to say, the emotional wear and tear was intense. So, I'm in the follow up with blood work and symptoms camp now. There are others who really like scans, but my experience has been that radiologists don't really know what they're looking at. Maybe if you could request a certain radiologist, it would be better. Anyway -- that's my two cents.
Best
Linda

10-22-2006, 05:36 AM

My health insurance onc nurse recommended I use Sally Hanson Hard as Nails during chemo - kept all of my nails only had some slight discoloration. I had Adria/Cytox/Taxotere & zomete for 4 months.

As for periodic scans, if your insurance will pay for them - get them every 3-4 months...the little cancer buggers can appear from nowhere. Regular full blood work is VERY good also - every 6 to 8 weeks. My 2cents & good luck!

bobbiw · 10-23-2006, 08:12 AM

Oh boy I am glad for this post as I have just recently been sort of dwelling on reacurrance. I finished chemo in May and am now on Herceptin and Tomaxifen. But it seems that every time I feel a little 'icky' my first thought is cancer, or a headache, or a dizzy spell etc..... My oncologist is like most on this thread. He does not believe in scanning unless I have symptoms or the regular bloodwork warrants it. So I am glad to hear that others are having the same experience with their oncs.

Bobbi

MJo · 10-23-2006, 08:46 AM

My finger and toe nails didn't fall off, but they got very brittle -- they broke, they peeled, etc.
During A/C my finger nails turned black!! It might have been more attractive if they had fallen off. They grew out finally. My nails are still soft -- I suspect from Herceptin. The nail on my right big thumb is pitted. Rest of nails, including toe nails, look ok, but the break very easily

Marlys · 10-23-2006, 09:06 AM

LindyJo,
I, too, have oncologists who do not do scans without symptoms. I had a lumpectomy times 2 (second to get wider margins). I am Stage 1, HER2+++,ER+++,PR+. After I joined this board I asked the medical oncologist if he did tumor markers and if so had he done them on me. He replied he considered them to be highly unreliable because of too many false positives and only did them rarely. As to scans I get a mammogram on the affected breast every 6 months, and on the non-affected breast every year. Because of what I read here I am content to let the oncologists be the doctors. That said if I thought something was wrong I would raise holy hell to get whatever treatment or test I felt was indicated.
Incidentally welcome to the board. I have found so much hope and comfort, not to mention information since I joined.
Hugs & prayers,
Marlys

P.S. I didn't lose any toenails but my fingernails and fingertips are a real mess.

Kaye · 10-23-2006, 12:15 PM

Hi Lindyjo, my onc said the following to me--when people talk of the cancer 'coming back' where does it come back from? The pathology lab? I laughed but knew what he meant. What is important is to get the cells up front. If it 'returns' it didn't come back but was always there. Hopefully the treatment(s) we get will take care of them, so they do not show up again.
Sometimes the treatments alone work. There may be things that we can do to boost treatment. I had read that eating cruciferous vegetables and/or vegetable juicing may boost the effects of radiation. I think I also read that staying away from caffeine during radiation was recommended, too--but would research that to verify.
My best thoughts are with you and hope this is soon all behind you. Take care!

tousled1 · 10-23-2006, 05:12 PM

Lindyjo,

My oncologist does not believe in tumor marker tests -- too unreliable. If you are on Herceptin the best test you can have is the Bayer Serum HER2 test. There is a thread on the board here dealing with the Serum Test if you do a search you will find it. A good rule of thumb is if you have any symptom that lasts for 2 weeks it is best to get it checked out. Whether that means an MRI, CT, bone scan or a PET/CT scan.

sadie · 10-23-2006, 09:46 PM

My onc feels the same way....and I'm glad.
I just had my annual physical which included mammogram & breast mri and muga scan and ct scan. I had the cat scan of my abdomen & pelvic area due to trace of blood in urine.
When I had the mammogram, they called me back in right after the mamm so they could do a magnified view. They said it was to compare with a previous magnified view. (yeah, right...was my 1st thought)
The wait for results on all of these tests was agonizing. All of those old feelings/memories came back. The scan results did show a small 7mm spot on my liver, but my onc said not to worry because of all of the false-positives. She truly does not believe it would be cancer of the liver.
But, she said she will now have to do another scan in 3 months to see if the spot is still there,shrunk or whatever. Now, I'm nervous about that!
By the way, no more blood in urine after taking antibiotics. Probably just a bladder infection according to my dr. All other tests came back negative for cancer.
I hate all of the anticipation.

bobbiw · 10-24-2006, 05:13 AM

I wanted to respond to the nail problem. My stepdaughter is a certified herbalist and has just told me that silica is good for the nails. She says that I can get either a vitamin that is high in silica or an herbal product that is high in it. I now need to go searching to see what I can find.
Just wanted to share.
Bobbi

chrislmelb · 10-24-2006, 05:56 PM

I am on the HERA trial and thought i had to have a bone and CT scan, BUT i don't. I was relived because there is nothing worrying me and i know that things can show up that are nothing bad. My oncologist only scans for symptoms and doesn't like tumor markers either.
Christine

Jackie · 10-24-2006, 06:59 PM

Lindy Jo,

My onc is like many on the board who doesn't do scans unless there are symptoms.

I didn't loose my toe nails, but they became thick and pulled away very deep in the cuticle. I did loose all of my fingernails. Some of them are stilled pulled away and I have been finished with chemo since Nov. 05. I think Herceptin effected them also and I have only been finished with it since Sept. 06.

elena.arkansas · 10-24-2006, 08:52 PM

Hi there,
I can relate. I lost all my toe nails and they never looked the same again. My podiatrist told me to really scrub my feet and use Vicks Vapo Rub as a preventative for fungus. He says I may be more prone to it growing now.

As for the tests and markers, I am now 6 years post diagnosis and 5 years post treatment. I was not eligable for the Herceptin trial back then. I have not had regular scans and no markers until this new doc in arkansas. I could have done without them. They only bring questions and believe me ... we have enough of them without any help. Living each day to the fullest and focusing on what is ahead and not behind creates energy not zapping it.

Remember - we are not in control anyway. God is sovereign and there is a plan. Sometimes I wish I just knew where it was going.

Smile and enjoy your trip.
E

bonnie · 10-24-2006, 09:52 PM

I didn't lose nails but they lifted and became discolored. I didn't know that with the water and moisture that got under them, fungus was growing. They curled inward and didn't grow back correctly and I had infection after infection in my toes. Finally I went to a podiatrist and all he did was cut down the sides of my toenails, which at the time was a big relief. However, eventually a manucurist was recommended and since going there once a month, I have had no problems.
My fingernails were really bad too, weak and broken way down. The manucurist used NailTek Foundation II for filling ridges, told me to put it on two times a day, and amazingly within a month my fingernails became strong and for the first time in my life, I have very good nails. I wish I'd known about this as I was going through chemo because I could have taken care of it before it got as bad as it did.
I've been off chemo since April 2004, radiation Aug., 2004, and Herceptin since Jan. 2004.

Bonnie