Desi_NJ

Hi Ladies,

Just an update - finished 10 of 33 rads. Okay so far..

TJW, sorry to know you are having such a hard time with rads. May be the fatigue is due to your cold,cough and radiation. I hope the antibiotics work soon. Are you getting blood work done every week? I get a finger test done for CBC and the white cells have dropped a litte after two weeks. I finished the same regimen of chemo as you did, on oct 10th. Started radiation on 10th Nov.  We seem to be on the same schedule for rads.

Keep in touch and take care,

Desi. 

Hi Bethany,

I noticed you had a different treatment plan than I did. But that is also equally tiring! You are right about the radiation - how can we be MORE tired than the chemo? I guess the worst is behind us!

I am trying to regain my muscle strength and stamina. Since I lost all sense of taste, I couldn't eat much. I lost about ten pounds (no regrets about that!) I only hope I don't regain it quickly! I was in the clinical trial with Avastin which has given me sinus problems. So due to this, I don't get enough sleep (which contributes to my fatigue).

I like your positive attitude about focusing on feeling better every day!

Take care,

Desi. 

Hi Everyone,

I am starting radiation today, so I'll be in the November rads group. I had lumpectomy in April followed by four rounds of dose dense AC+Avastin and then 12 weekly Taxol.Finished chemo in october and moving on to rads. I'll be getting 28 whole breast radiation with 5 boosts (33 total).

For skin care, the nurse recommended a lanolin based cream (Lansinoh) - has anyone used this? I haven't come accross this in the discussons.

I still have fatigue from the chemo. I hope I can get thru this radiation!!

Take care,

Desi. 

Hi Brena,

Sorry to hear about your side effects and all the pain. I hope the docs find something to help relieve the pain. It must be hard for you - I hope you have enough help at home to cope with everything. Does your daughter live close by? I'll be praying for your quick recovery from all the SEs.

I start radiation on Nov 11. I will be getting a sleeve for my arm tomorrow, to prevent lymphedema.  Even though I finished chemo 4 weeks ago, some of the side effects are still bothering me - stuffy nose, sinus problem, pain in the legs and ofcourse, lack of sleep. My taste buds aren't back yet - how long does it take for the tongue to start tasting again? Did the radiation affect your taste buds?

Take care of yourself. Hope you feel better soon,

Desi. 

Hi Ladies,

Now that Chemo is over, I am waiting to start feeling 'normal' !

Brena, thanks for your response. I have been resting and going for small walks. Hope you enjoy your trip. I have been referred to a lymphedema therapist - I will be seeing her next week for evaluation. I hope I don't have to go for PT often, since this place is far from where I live. There are no other therapists in central NJ area.

Jen, will you have to go thru radiation too? I hope not. Once this fatigue from Taxol reduces, I am planning to go back to work during radiation.

I don't know when my port will be taken out - the nurse said after radiation. So I guess, I must wait.

Carolyn, Taxol will be over soon. So hang in there!  Since it is 12 weeks, it seems to go on forever!

Take care,

Desi.

Hi Brena,

Sorry to know that you still have the breast pain and swelling. Hope you get relief soon.

I was 'unblinded' yesterday and yes, I was getting Avastin. But since I am in 'Arm B", I am done with Avastin (8 cycles total). I will be glad to get off Avastin, because I am having v.bad sinus problems and continous nose bleeds. I have to get up every two hours at night to blow the clopts from the nose!!  I still have unbearable body aches and fatigue from Monday to Wed every week. By Thurs it gets a little better. I try to manage the pain with Advil and Aleve. I think this is due to Taxol - 10 done, 2 more to go!!

Regarding clinical trial for Bisphosphonate, I was told by the clinical trial co-ordinator that this trial is closed. They are not recruiting any more patients. I am looking for info on other clinical trials, for which I may be eligible.

Take care and keep us posted about your treatments for breast pain.

Desi.

Jason222,

I am having the same problem with weekly Taxol - my WBC/RBC is low but just enough to get the treatments.

 I have heard high protein diets helps with the blood counts. There is nothing much we can do with the WBC - usually the Neulasta/Neupogen is not given for the weekly treatments. But you can ask the oncologist about it.

At present I am trying to eat healthy and just hope it helps.

Desi.

Keryl,

I am sorry to know that the doctor found positive nodes after the surgery - it is hard enough with one surgery. Please let us know how it went. If you are on the trial with Avastin, then chemo might wait till you are completely healed (usually 3-4 weeks). In case you get Avastin (instead of placebo) then it is known to slow down healing.

Brena and others have undergone complete treatment regimen - they are the best to advice you. I have finsihed AC and now I am on Taxol (along with Avastin/Placebo). Later I will have radiation due to lumpectomy and positive lymph nodes. I am really worried about radiation and its side effects.

Take care,

Desi.

Hi Ladies,

Just an update - finished my 6th Taxol yesterday with lots of pre-meds. Feel a little tired and nauseated today - but not too bad.

Brena, thanks for asking - Yes, anti-nausea medicines helps on day 2 and 3. Then I need only advil/tylenol combo for my bone and muscle pain. Last week my Onco prescribed Prednisone (20 mg/day) for three days and I was so depressed - I cried for the first time since my diagnosis in March 2008!! So I am not taking it any more!! Not worth it!! I will be unblinded on Sept 26th (eighth cycle) but with the profuse nose bleeds, I am guessing I may be getting Avastin (but I may be wrong!). Another question - you did so well during Chemo but had to take time off work during the radiation, right? Was it due to fatigue? I am hoping to get back to work during rads, but I don't know what to expect.

Harbin, sorry about the blood transfusion, but that may be the thing to help immediately. I got a shot of Arnasep for my RBC and Hemoglobin (it was dropping). After my 5th Taxol, my WBC dropped a little lower this time but neutrophils were borderline. The nurse told me to eat more protein and take vitamin B6,B12 and folate. I don't know if this helps but it couldn't hurt. I am a vegetarian, so getting protein is a challenge.

Carol,there is nothing we can do with WBCs and Neutrophils. My onco said 'take a lot of fluids and rest - don't step out in crowded places, if you don't need to'. She hasn't released me to go to work (even part time) because my counts have been on the low side since DD AC (I was in the hospital for 4 days). I am taking her advice and so far so good! Like everyone else, I don't want to skip any treatments and want to GET IT OVER WITH !! I hope you will go thru' the rest of the treatments with minimum SEs.

Take care everyone,

Desi.

Hi Ladies,

I have been lurking and reading the posts but not posted recently. I finished my 4th Taxol/Avastin/Placebo last week and tomorrow is my 5th Taxol. I have had nose bleeds (not just when blowing nose) but streaming blood this week - don't know if it is Avastin or Taxol!

Fatigue and muscle pain (upper back and neck) seems to have gotten worse. I was hoping Taxol will be easier! I hope the SEs don't get worse with every week TX. Still on STD - haven't had energy to drive 25 miles each way to work!

My hair (what was left after AC) is still falling. Nails had turned black long time ago. As long as it is not painful, I can live with that!

Brena, I hope your insomnia gradually goes away. Maybe getting on the cruise and getting away from home would help. Are you stressed at work or home?

Take care,

Desi.