TRIPLE POSITIVE GROUP
Comments
-
How horrible for you, Hapb. You must be beside yourself. There are no words that can offer comfort during what has been an awful time for you.
I'm so sorry
0 -
Posey - you are correct when you say that the a
0 -
Sorry for your loss, Hap. Be gentle with yourself. My best friend had lived with stage 4 for 5 years but entered hospice the same week I was diagnosed. She died the same week I started chemo. I miss her! She lived life to the fullest in those 5 plus years. Travel, visits to grandchildren, lengthily correspondence with friends and with others she knew had cancer. She is my role model for living and dying with cancer.
0 -
HapB, I am so sorry about your friend.
0 -
Posey, I remember this post about the probing but I cannot find it, it was quite interesting I remember. I am not sure I understood you exactly about the recurrence, not a native speaker. Did you mean that those who recurred actually did it because they had to stop a certain treatment or that treatment fulfillment was not playing a big part when it came to recurrence? I am also reading an older thread for Her2 that started 2007 and there you can clearly see how many who did not received Herceptin recurred.
I talked to my nurse at the oncologists office and she said the same thing that those who recur often do not fulfill the treatment like skip their hormonals etc. The oncologists I talked to, and I did talk to four in two different clinics, they are more careful in what they say but this is due to strict confidentiality when it comes to the medical records, I am sure it is the same in US. When I asked them whether they have seen many recurrences for my type of bc and my stats, I got the identical answer from all of them, that they have been there for such a long time that they have seen everything but they have also seen many others, way more, who did everything and it went well. But there is no way to know who will recur and who will not, all of them claiming that Herceptin changed the picture for those who are Her2.
I will meet my oncologist, the last one I met, I liked her, in two weeks and I will ask her when the first year starts for us triple positives. If the risk eventually decreases over course of five years according to this Dutch study SpecialK posted I want to know when does this first year starts for my oncologist.
0 -
My deepest sympathy Hap.
Vick
0 -
Kattis, yay for your new job keeping you busy. I am working from home and it is good for me even when I do not want to do anything like today for example.
Right now I am eating everything because I am in treatment, but later I will start with a plant-based diet.
Coachvicky, you are such an inspiration I always smile when I read your posts, and this is a rare sight right now, I am not smiling much at all. Trying for my youngest though.
0 -
I have a question for those who did weekly Taxol och Taxotere, because both are taxanes.
I had my 6th infusion of Taxol yesterday and today I am not feeling this well. Yesterday evening I noticed how swollen my feet have become and put on the socks I use for flying, laid down with my feet up for a while and arrange them to be elevated during the night but still swollen today in the morning. Even my fingers arearesomewhat swollen . And I have this pain in my left hand that I cannot really determine whether it is neuropathy or bone paint or joint pain. I do not feel it in my finger tips and there is no numbness but my fingers are aching when I am doing something, like in the kitchen or type on the computer. I do not feel any pain when I am not moving my fingers, but when I do it is rather painful sensation along the finger. So what would you say, is it neuropathy or something else?
I had a conversation with my nurse yesterday about it and according to her they cannot do anything about the neuropathy but postpone the treatment when it comes. They had an educational class about it last week and the educator told them that even though they experience that B6 helps the patients there is no scientific proof for it. And I do not want to postpone my treatment either.
0 -
cherry - taxane chemo is well known for causing both swelling and bone pain - this is very common. Classic neuropathy with taxanes is more along the lines of tingling and numbness, I did not experience pain with neuropathy, but some do. I think it is more common to have painful neuropathy in the feet because standing and walking puts more pressure on them. I had to go on a diuretic part way through chemo to help with swelling - I could not fit my shoes on, and this helped a lot - I stayed on it for quite a while afterward as well, and then weaned off slowly. My oncologist prescribed triamterene as it is easier on the kidneys, and not potassium leaching. Chemo was challenging my kidneys enough that he wanted to be careful while still addressing the swelling.
0 -
Cherry - the pain you describe does not sound like neuropathy as I have experienced it.
The pain in your hands reminds me of a reaction I had to an antibiotic which caused swelling and pain. PubMed says that if you experience swelling in the hands or face from Taxol that you should contact your doctor asap. Apparently this can be more serious than swelling in the feet.
0 -
Hap So sorry for the loss of your long time friend. ((hugs))
0 -
Cherry, I had a lot of leg swelling during Taxol and my dr didn't want to put me on a diuretic. I handled it pretty well with high potassium foods and no added salt and dandelion tea. But about 48 hours after Taxol, I always got the swelling, for a few days. Claritin worked for the bone pain.
0 -
Thank you SpecialK, I remember you discussed it in the original group back in 2011, still reading it, I am now on p.181. Someone of you have mentioned the swelling with Taxotere and deuretics. What about potassium leaching, I also remember that deuretics were rather to avoid due to something, was it due to the potassium issue?
I am trying to understand whether it is neuropathy I am having or not. I do not have any numbness but the pain is tingling and it is worse when I am moving my fingers compared to when I am just holding the book. It is so far not so bad with my feet except for swelling.
Today I really understand that the effect will be cumulative, and that it will be harder after each infusion, and my next one is with Herceptin and it is always harder than Taxol alone.
0 -
Vicky, Great post! Live life to the FULLEST !
0 -
cherry - that is why my oncologist used the drug Triamterene - it is potassium sparing.
0 -
Lita, KB870, thank you for your reply, I do not have any swelling in my face, have just checked it in the bathroom, it is a bit red of cortisone, but it has not swelled so far. My fingers are not so swollen either but my feet are down from the shines, around my ankles, I have had the flying socks on me the whole day and now I am trying to elevate them. I have just called my oncologist office and a nurse will contact me soon.
0 -
bareclaws, thank you, what about potassium and what food shall I eat?
0 -
SpecialK, do you mean I need more potassium?
0 -
Hi All-- finished my hard chemo awhile ago - had masectomy, reconstruction - still getting Herceptin until end of December - and am on Tamoxofin-- have some great days but today I literally could not drag myself out of bed. Alarm went off at 7 and didnt wake up till 10;30. Totally late for work!! Is anybody else this tired-- no other symptoms just some days am exhausted--sort of hate the Tamoxofin --anyone else?
Does anyone know if I have my ovaries removed can I stop this drug?
Anyone else have this episodic exhaustion? Just wondering-- trying to put this behind me - hear about people who work completely through chemo and I am on Herception and Tamoxofin only and feel like a wimp-
0 -
Go easy on yourself SportsMom16. Go real easy.
I worked but nothing like I did before diagnosis.
I could not tell from your profile what surgery (if any) you had but those can also take a while to heal from.
As for your ovaries, I had a robotic hysterectomy in February while on Herceptin only and finished Herceptin 14 August 2017.
As for hitting rock bottom, I hit it April 2017. Got an iron infusion and felt better.
My Oncology Nurse said to feel some energy return in 3 to 4 months after my last treatment. She said I should have my energy back in about one year. Today, I could not push the grocery cart that was full. I still have some trouble lifting.
It just takes time. It just takes a while to feel better. There are good days and not so good days. What I try to remember is that my cancers are gone. That really helps with my energy.
My nephew wrote me yesterday to ask if he could share my journey with a colleague that was just diagnosed. I cried when I read his email knowing the shock this woman was going through and what would be in front of her. ( I know I wrote about this earlier.)
Then I looked down at my chest overflowing in a rounded tee shirt and re-framed me. I got some great boobs out of this. Would have preferred just the boob job but I can reframe it into a plus.
Vicky
0 -
HapB, so sorry for the loss of your friend. Sending you hugs!
Cherry, I had weekly taxol and never had a problem with neuropathy. I remember that my doctor asked me in each visit if I had experienced swelling, so it's definitely worth going in and having them take a look. Hope you feel better soon!
0 -
Swelling? You should see your doctor. I can not remember why but know my onc used to check for swelling on my ankles..I think it has to do with some organ like kidneys perhaps that might take a beating during the chemo. Have it checked. Regarding a tingling feeling in your hands and feet, I had that a bit but it went away very quickly as I finished chemo, I have heard of some that has had it for awhile after chemo ended so it might take awhile to disappear.
0 -
Cherry, I drank dandelion tea because it's a natural diuretic. And was careful to eat foods high in potassium, because many diuretics (even natural ones) can cause potassium to drop. If your potassium is too low, it can cause you tomhabe chemomdelayed.There are many lists of those foods, easy to find online.
0 -
Cherry - I had very painful neuropathy with Taxol. There was swelling in both hands and feet but not my face. I was given gabetinton (not certain of the spelling) by my MO and my neurologist upped the dosage. The packaging said it is also used for shingles if that helps you find it. I also stopped Taxol with my MO's support after 8 infusions because of the pain.
0 -
Hapb I'm so very sorry for your loss. How tragic to lose such a close frien
0 -
Sportsmom, I'm experiencing extreme fatigue it comes and goes. Some days I can barely move I'm so tired.I had my last HP a month ago. I think Coach Vicky is right - we need time for our bodies to heal. Not only from the drugs but surgery and recon too. I tell myself to be patient, that it's a process. We've been through so much and as Hapb said we need to rebuild our cells. Hang in there
0 -
sportsmom,
like deni i am experiencing fatigue too. worse in the afternoon. had my 11th herceptin last friday and i think it made it worse. last chemo was june 2 and bmx july 14. it sucks.. i have a friend who only started to feel better 1 year after last chemo so i guess it will take a while...like right now i can barely keep my eyes open and its only 5:30 pm where i live and there is still homework and piano for the twins. sigh.
0 -
cherry - no, I mean this particular diuretic does not cause you to lose potassium, you don't need to supplement with extra potassium while taking it.
0 -
I have contacted my oncologist office regarding the swelling and they just called me back. They said that swelling in feet is common for Taxol and I should use my orthopedic socks during the day and then if it gets worse I have to contact them. It subdued now but I have six treatments to go. I had my first echo today, it went well, they said everything looked good. The pain in my hands is not as bad as it was yesterday but is still there and the surgery area in my left breast hurts like aching all the time, has anyone experienced that during the treatment, anyone who did adjuvant?
0 -
cherry - there are a number of reasons for swelling during treatment - the Herceptin can cause cardiac issues, this is why we usually have a baseline echo/MUGA and have them repeated quarterly throughout the year of Herceptin, the chemo agents themselves can cause allergic reaction and swelling, and the steroids that are given to prevent allergic reaction and help control nausea can also cause swelling. Excellent timing on the echo, that helps rule out any cardiac issues. From the mid-point on I had swelling, and a photosensitive rash on my arms. That bought me extra steroids, which in turn, caused more swelling. I just had to ride it out, with the help of the diuretic, but do make sure your oncologist is aware of when you experience this swelling in relation to your infusion. I had adjuvant chemo and did experience some discomfort at the surgical site of the cancer breast, which had a mastectomy and expander. During chemo the other side was flat, having had the expander removed. For you, starting chemo relatively soon after surgery, this would not be unusual. Chemo inhibits healing, and causes soft tissue irritation, so it makes sense that your recent surgical site may ache.
0
