- This topic is empty.
December 28, 2012 at 4:09 am #20882
I hope each of you had a wonderful Christmas first of all!
I go Tuesday to the new oncologist so we will see what his advice is! Looking forward to it and I have heard positive things about him.
Although I am diagnosed stage IIIA- there was still questions since no nodes were positive, so I could be a stage II….
I AM CERTAINLY PRAYING THE NEW DOCTOR AGREES!
I do know once you have been staged though you cannot go back down but I am thinking positive none the less!
Lymphedema is still with me- stage II on that:(
Therapy once a week now, but trying to maintain a normal as can be life at this point- 4 months since total dissection , not sure what expected recovery time should be but it’s taken longer due to lymphdema ….
Pray that Tuesdays visit goes well for me- sure a scan will be scheduled:)
God bless and keep the faith!
GaylaDecember 28, 2012 at 3:47 pm #58198sandatucsonParticipant
I will be thinking of you and wishing only good news in the new year.
Let us know how you are.December 29, 2012 at 4:35 pm #58199LinnyParticipant
Good for you for pursuing a second opinion!
I am sorry to hear that the swelling in your leg has persisted. I was thinking about you over the holidays and was wondering how things were going. Hopefully between the therapy, compression bandages, and MLD, things will eventually return to more of a normal state for you. If you ever feel down, just keep my neighbor in back of your mind. She’s been living with leg lymphedema for years and is doing great, so there are success stories out there.
I’m praying that you’ll receive good news during your second opinion.December 29, 2012 at 11:11 pm #58200Shirley ZParticipant
I’m also sending my best wishes.
I hope the leg lymphedema improves for you. Its a hard thing to live with, but hopefully with the therapy it will get to a more tolerant level. As time goes on you will become more aware of the things that really cause flare ups. It has definitelty caused major changes in our life.
There are several things I’m always thankful for. Being able to laugh with my husband (he is my rock). To receive sweet butterfly kisses from my grandkids and to know that for now I have managed to beat the odds from a very poor prognosis.
We never know what tomorrow will bring but the joys I have in my life right now make up for the bad days. We can only look ahead and deal with the difficulties a day at a time. Somehow that seems to make things easier for me.
Hang in there. Wishing you better days ahead.
Shirley ZJanuary 8, 2013 at 7:18 pm #58201
New oncologist scheduled a CT and it was done this morning. Way too early to be out and about in freezing temperatures;) LOL.
I see her on the 16th for the results- feeling good about it.
She determined to alternate CT, Chest X-ray, PET on each year anniversary of diagnosis, then so on and so on….so next will be Chest X-ray in 3 months. PET in July.
Hopefully that will not be too much radiation exposure.
I hope this year brings all of us on this board a cure….this could be our year!
God bless and I will post on the 16th after I get my good news!
GaylaJanuary 8, 2013 at 9:18 pm #58202
Quick question to some of you that have been dealing with this longer than I have- my other medical oncologist did not agree with CT scans in my situation, he felt it was too much radiation for what he considered stage II and a chest X-ray would suffice, however as I was transferred to another oncologist – due to distance of travel- she was 30 years younger and insisted on a CT….
Opinions anyone with experience?
My husband doesn’t want the CT but we did one anyway today, I was afraid NOT to….
GaylaJanuary 9, 2013 at 1:58 am #58203
When I was first diagnosed the Melanoma Center I go to did not routinely order scans. Since the approval of newer therapies they have revised their plan that now includes scans – Every 3 mos Ct or Pet for high risk pts. Before they were only ordered if symptoms presented. Now they say its important to catch things early so they can be treated at an earlier stage. I don’t like all the radiation but melanoma will kill me way before I have problems with radiation overexposure. I have had 3 Pet scans and 2 Chest Ct’s since Sept but all of them have been necessary. You also have to go with what makes you feel secure. There have been times when I requested Ct scan over Pet just to cut down on radiation.
Mary SueJanuary 9, 2013 at 2:42 pm #58204
Hi Mary Sue,
It’s good to hear from you and I hope you are feeling well…I have been checking on you on the board.
My lymphedema therapy is almost to an end, insurance approved it through January then I suppose we will re-apply to do it again.
This time I am going to opt for regular PT since it is here locally and won’t have to do the 40 mile drive 1 way- the day of therapy is a 3 hour ordeal with travel time. Plus I have a 7 year old, trying not to affect him as little as possible. He did make the comment he was tired of Dr visits and mommy’s leg hurting
Broke my heart.
It is just as tough on them as us because he is too young to understand it all and he talks alot about heaven lately.
I am waiting on my visit on the 16th which will be results of yesterday’s CT and follow-up with the new Dr.
Not sure I will be staying with this one, I was scheduled with another that my former oncologist had a great deal of respect and knowledge of but I got threw a curve ball and ended up with a new Dr., new to the practice and just out of school…she didnt even know my cancer and started looking at my arms???? I said. “Uh, it’s melanoma and on my right knee.” LOL.
She had absolutely no records on me and luckily I had my own with me! I have all paths, notes and surgery records in a folder with me on visits so I can make notes.
After much thought on it last night, I decided I would agree to 1 scan a year. The rest of it can be X-ray. And I think 6 months instead of 3 months…..
I cannot consume my life and thoughts with Dr visits and scans….
I must live my life and trust in God that he has this in his control and no matter what I or any Dr says, it is what it is and that is his will…
Have a great day!
GaylaJanuary 10, 2013 at 2:15 am #58205
The scans are a double edge sword. I want to know what’s going on but the waiting right before and also waiting for results is agonizing and no it doesn’t get better with time. I had my 1st Cyberknife today and also took my 1st dose of Zelbobraf today. I am still using the pump for my lymphedema and its working well. Summertime is my worst time especially the humidity. Hope things continue to go well.
Mary SueJanuary 10, 2013 at 3:58 am #58206
How are you feeling after the treatment and Cyberknife?
I am so sorry you are having to go through this Mary Sue , I just hope you have a very good support system at home.
I called to see if they would give me the scan results over the phone today but absolutely not
Guess I must wait until next Wednesday for results.
We have a new cancer center here in Atlanta- Cancer Center of America, I think it’s called. It was not open when I was initially diagnosed and going through surgeries but from reading about it, it is state of the art technology and integrates holistic and modern medicine. It may be where I end up.
Not feeling as good about this transfer to Cancer Center of Ga- it is out of Athens but they have a satellite office in my little town, and it was packed with patients for the one doctor that travels here once a week….
Just wasn’t what I was used to coming from Emory, I was used to be treated as a person there, not a statistic.
If I don’t go back to Emory, I will go to the new center. I simply cannot foresee me staying with this lady.
I had a gut feeling to not remove these lymphnodes and I ignored it so I will not ignore the gut feeling this time in leaving this satellite office. Lymphnodes were clear and I had the feeling they were, now I have life changing lymphedema from removing it. Therapy for the rest of my life….
She spent less than 10 minutes with me and seemed overwhelmed with 30 patients waiting – it was unreal for 1 doctor to be that overloaded.
Especially an oncologist.
Hope everyone has a wonderful evening and keep me in your prayers – good news next Wednesday!
GaylaJanuary 10, 2013 at 4:31 am #58207
Gut feelings are usually right. I have a metastatic node in rt axilla and I will not have another lymph node dissection. No way am I having lymphedema in my left leg and my dominant arm. We are keeping the node to minuter the effectiveness of the Zelbobraf. I can always have ultrasound to check on the other nodes in that area. The Cyberknife was easy.I actually fell asleep. I took the 1st dose of Zelbobraf tonight. The Radiation Onc warned me that I was going to have a serious case of esophagitis due to node being radiated that is stuck on my esophagus. This will be painful and swallowing will be an issue. The pills are huge and can not be crushed. Should be interesting. Take care and I’ll update soon. Cyberknife will be Fri again and MWF next week.
Mary SueJanuary 10, 2013 at 2:14 pm #58208LaurieParticipant
MarySue, I am so sorry your results were not good. Good luck with the Zelbobraf and I will be praying for you. LaurieJanuary 10, 2013 at 8:51 pm #58209 Gayla and Laurie thanks for thinking of me. No side effects yet from Cyberknife. Dr said around Treatment 3 for the fatigue and esophagitis. My husband went yesterday and my daughter will be taking me for the others. It’s hard for me ask for help. I was a nurse for 35 years and I’m used to helping not asking for help. I have had offers from friends and other family members too. It makes me realize what a great family I have. The hospital is in Georgetown(D.C.) and we live about 50 miles away in Va. I am usually involved in either the morning or aft rush hour which can make it up to 3-4 hr driving time. 1 week after my groin dissection after my 1st post op we got caught in a surprise snowstorm and it took 11 hrs to get home. I still had drains in and was non weight bearing still. We had no food or water and my husband had to melt snow in my drainage container(clean) so I could take pain meds. Then a while later I had to drain my tubes so no more pain pills. It seems funny now but I was not laughing that night. So I prepare now with water and something to eat. D.C. traffic can be a mess from 1 accident.
Mary SueJanuary 11, 2013 at 7:46 pm #58210
You are truly an inspiration to all of us here on this board
I will post the results on Wednesday- Keeping the faith that the news is wonderful and I can take my son to Stone Mountain next month
GaylaJanuary 12, 2013 at 3:26 am #58211
Hoping for good results for you. Take that trip regardless!
- The forum ‘Melanoma: Stage III’ is closed to new topics and replies.