Calling all triple negative breast cancer patients in the UK
Comments
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Hi Sylvia and all,
Sylvia, thank you for your kind, knowledgeable words. And congratulations on 13 years! Wonderful!
I had weekly taxol for 12 weeks and recently finished treatment. I have developed neuropathy in my hands and feet and will try the cream you suggested. My neuropathy isn’t painful, but is bothersome. My MO said it should go away in about 2 months, but in rare instances can be permanent. (I was warned of this in the taxol side effect list I was given at the start of treatment.)
Before taxol, my treatment was DD AC. I had an echocardiogram at the start and ending of this 8 week treatment, as adriamycin tends to be hard on the heart. During taxol, I was weighed every week and dose was determined by my weight. (Which held steady throughout treatment-have always been of average weight, so dose amount never changed in 12 weeks) I also had weekly blood tests.
Sylvia- I was interested to hear from you that radiation also causes lymphedema. I start radiation the end of July. I have not felt signs of lymphedema, but am scheduled to see a lymphedema specialist in a couple of weeks. I also mentioned I am scheduled to attend a class she is leading in July. I will let you know what I learn In that class.
Thank you again for all of your helpful and knowledgeable posts. I learn so much from this thread.
Xoxo
Monica
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Hi Val
I think you are right about the quoting of stats; I had heard for a few years that, according to studies, the first 1 1/2 to 2 years after diagnosis are the most likely for recurrence in TNBC. A study I saw a short while ago said that the time between 3 and 5 years after diagnosis is the most likely for recurrence. I think I will give up on looking at these studies.
I also was very active before diagnosis, very slim, ate a decent diet and still developed cancer.
According to statistics, very few of us here "should" have developed TNBC and/or in your case, also IBC.
In one of my recent posts, I linked to an article about an old drug being repurposed. Not a chemo drug or immunotherapy, just a pill that is given to opioid addicts to help them get off drugs. I find this interesting, that old drugs are being studied for use with cancer treatment and prevention; because the new immunotherapy drugs are also toxic, and very expensive.
Talk soon, love, Mary
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Pam, I am not sure I ever replied to your last post. You mentioned that all the navigating of unfamiliar airports, hotels and cities is taxing and really quite physically and mentally demanding. We find that we often get turned around the wrong way and spend a lot of time getting to the right place, our intended destination. But except for the airports, that is usually enjoyable and a learning experience. The airports can be daunting, I remember last year we were looking for our flight from Chicago to Europe and asked several employees for directions, got nowhere, and finally and accidentally sat down to rest a moment and found that we were at the right place at last, a small corner desk all alone in a downstairs room. We then had to wait for a guide and she led us out the door and along the tarmac to a waiting plane, I don't think we would have found it in time if luck hadn't guided us.
Glad you had such a good time! It sounds like a great trip you had, I would like to go there too sometime. Did you eat haggis?
Talk to you again soon.
Love, Mary
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Hello Val,
Thank you for your email and, like you, I do hope those of our group that we have not heard from in a while will get in touch soon.
I agree with everything you say about statistics. As for the internet, a lot of the information is not up to date. I find information on the internet somewhat confusing. When you look up something you do not want pages and pages saying the same old thing. I look for something that is 2017 or 2018. Most of the time I stay away from it.
Like you, when I was diagnosed in June 2005, I was told, on my second appointment, after the fine needle aspiration on the first appointment, that the prognosis was not good because the receptor status was not hormonal and I could not be given tamoxifen. That was not very encouraging, especially as the receptor status did not mean much to me at the time. I just ignored it and did all my own research from a book, brand new in 2005, The Cancer Directory by Dr Rosie Daniels. That was an excellent book. With hindsight I still think it was better to be hormonal negative. I would not have wanted to be on tamoxifen or the aromatase inhibitors for ten years, with all the side effects and the packing on of weight.
My first appointments were with the breast cancer consultant surgeon and I did not see the oncologist until I was told I was going to have six months of chemotherapy first to shrink the large tumour to make surgery easier. When going through chemotherapy, I once saw a Registrar instead of the oncologist and he rather vaguely told me that I was not going to make it. I ignored this but really I should have reported him.
I was also told that TNBC usually affected younger women and that TNBC represented only 10% of breast cancer patients. It seems to me it must be much more than that now, especially when I read TNs and see all the new threads in TNBC that come and go. I get the impression that it is an epidemic and yet over here we still see in the media that cancer is a disease of old age.
With your inflammatory BC have you had any special problems typical of that status?
I was so glad to read that you appreciate the ladies on this thread. I do see what you mean that some threads have become focused on quoting statistics. I cannot really see what use or satisfaction that there is in this.
I do not take much notice, either, of all the great enthusiasm over trials and new drugs. Nothing will materialise from this for years and we have to deal with the here and now. I recently read an article in which there was great enthusiasm about modifying mutating genes and bringing about a no evidence of disease in one woman! I found that a bit crazy, especially as they had done it on three women, and it had failed on the other two!
I agree with you that whatever is being tried, drugs are drugs and are toxic.
Thank you for your kind words about the thread.
If you have any recent books that you have read recently and have found informative, please do not hesitate to let us know about them on the thread, especially anything to do with breast cancer, TNBC, and anything connected with all aspects of treatment and also keeping healthy and preventing disease.
Sending you fond thoughts.
Sylvia xxxx
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Hello Monica,
I was so glad to see you posting again on the thread and thank you for your kind words.
I was interested in what you said about your neuropathy in your hands and feet. Like you, the neuropathy in my feet is not painful, but it is bothersome. It is hard to describe the sensation but the soles of my feet feel dry and stiff and yet they are not. I regularly see a podiatrist and I started going because of the neuropathy and the first time the podiatrist carried out a prodding test with some kind of needle while I kept my eyes firmly closed and I felt nothing. She told me that I definitely had peripheral neuropathy in the feet and that there was no cure. From time to time I get her to retest.
I do find relief by soaking my feet from time to time in a bowl of warm water with some bicarbonate of soda in it.
My oncologist definitely told me that this neuropathy is caused by the taxane drugs, so I am surprised that your MO told you it would go away in about two months.
I am sometimes puzzled when the American women on the thread talk about an MO. Here in the UK the oncologist deals with all the chemotherapy treatment as well as the radiotherapy treatment. Is there a difference somehow in the US between an oncologist dealing with chemotherapy and one dealing with radiotherapy, or are they both known as MOs?
I was glad to know that you were warned about Taxol and neuropathy in the side effect list that you were given at the start of treatment. It is good to know that the dose of chemotherapy drug is still being based on height and weight. This means it should be done before every session because you could be losing weight or gaining weight and the dose would have to be adjusted. Like you, I was lucky that my weight stayed the same. As for my height, I realised that after chemotherapy I had lost height and a bone density scan (a DEXA scan) showed that I had developed osteoporosis. That is why I tell all patients on the thread to get a DEXA scan before and after treatment.
I was interested to know that you had had AC for your first chemotherapy sessions. The drug doxorubicin (Adriamycin) and Cytoxan (cyclophosphomide) is a standard regimen. I remember my oncologist telling me that doxorubicin was very harsh on the heart and she gave me epirubicin (Ellence) and cyclophosphomide (Cytoxan). Epirubicin is the same group as doxorubicin and I suppose it also affects the heart. My oncologist also told me that docetaxel (Taxotere) was less harmful on the heart than paclitaxel (Taxol), but since they are both taxanes they probably both harm the heart. Again if that were me I would be getting an ECG before and after treatment to see what has happened to the heart.
I do hope all will go well when you start your radiotherapy in July. Be on the watch for lymphoedema given that you had nine nodes removed. I shall probably write more about radiotherapy as you go through your treatment and have questions to ask.
Please let us know what you learn from your lymphoedema specialist so that we can compare notes and I shall be very interested to know what you learn from your class. I think it is such a good idea to have all this information and advice before you start your radiotherapy.
Looking forward to hearing from you again.
Fond thoughts.
Sylvia xxxx
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Hello Everyone,
I am doing fine, just overwhelmed with work, commitments, and a "crashy" computer. I only post when I can do it from a desktop. I hope to post more regularly when things settle down a bit.
Sylvia, congratulations on your 13 years, and for all of your hard work to keep this place of hope up to date.There has been much activity, but I did a quick post when I returned from my trip to Ireland and Scotland, which you were kind enough to acknowledge.
Mary, The travel can be really daunting, indeed. I always say that you have to really want it, because it's definitely a learning experience. I'm not surprised to hear that you had a near misadventure in an airport. The story of any trip is always the story of the misadventures, too. We ate haggis everywhere, as we did last year. It's quite tasty. I recommend Scotland in particular, and love the idea of having tea in the UK with some of our group members someday.
It may be a bit before I can get my pictures together, but here are a couple. I'll get back when I can.
This was in Dun Laoghaire, Ireland. I forgot entirely that it was the anniversary of my diagnosis, until many days later.
And this is at the Cliffs of Moher, which it seems that every tourist in Ireland visits. It was breathtaking, and it was Puffin season. We got to see it on a very warm, clear day.
Sending warm wishes and thoughts to everyone,
Pam
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5 days post final taxol, and I’m struggling to get off the couch. I think I was so excited and happy on Tuesday to finally be done with a long grueling chemo treatment (since February 5th!), I forgot that, of course, I would still be dealing with side effects. And with taxol, many side effects are cumulative, so I’m kinda miserable right now. I was hoping to go for a walk outside on this beautiful, sunny day, but the neuropathy in my feet is making that difficult (if not dangerous). So here I lay. Ugh!
Sylvia-yes my MO (medical oncologist) is in charge of my treatment plan. I only met with my surgeon one time after my lumpectomy. Next month my MO will turn over my treatment to an RO (radiation oncologist) who I haven’t met yet. I know all of these doctors (MO, RO, surgeon, radiologist, pathologist) meet as part of a “tumor board” and have discussed my specific case, but I am anxious to meet with RO and find out how many days of radiation I will be facing. I have read on this board anywhere from 3 weeks to 6 weeks. I also read different countries seem to have different protocols. I read that in Canada women tend to have shorter radiation treatment time, and many here in the US are going for as long as 6 weeks. Perhaps it depends on the kind of BC, tumor, etc...not sure. But I am anxious to find out.
I also wish I could know how long side effects from chemo last. I would love to plan a holiday. I had to cancel a cruise planned to Mexico that was to happen during treatment. My family would love to reschedule, but I am hesitant about time frame. I don’t care about being bald, I just want to have energy and be able to walk on these numb feet.
More later. Time for a nap. I enjoy all the pictures of flowers and gardens posted!
Xoxo
Monica
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Hello Pam,
It was so lovely to see you back on the thread and I did miss your posts.
Thank you for those two stunning photographs and congratulations on your 2nd anniversary since diagnosis.
You will see we now have Monica and like you she is from California.
I shall talk more later.
Love.
Sylvia xxxx
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Hello Monica,
I shall answer more later but I just wanted to say thank you for your post and you will need to give yourself a lot of time to recover from your chemotherapy treatment and allow your immune system to become stronger.
I shall write more later.
Love.
Sylvia xxxx
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HI Sylvia
I saw your question about the use of the term MO, I think it means Medical Oncologist, then there is also a Radiation Oncologist, RO. I didn't have radiation but did have a consult with the Radiation Oncologist or Radiology Oncologist. That was early on when they assumed I had ER+ BC. Many things happened to me along the way through chemo, and I did not get radiation as part of my treatment, so I did not use the RO.
When I had treatment I just had the Tech who would weigh me, take blood pressure and check oxygen level, then the nurse who would take blood to test if necessary, then the MO for a consultation, and then the nurses and nurse assistants who gave me the chemotherapy that was ordered based on height and weight. I would have to come back the next day for a shot of Neulasta because my white cell counts were always very low, that shot was given by a nurse.
My DIL and other younger women I know who went to a larger city for treatment more recently talked of having a "team" of doctors, I think that would be a better approach. My "team" was a surgeon who worked in a very busy office and operated in the hospital, and the MO who I saw in a Cancer Clinic. I assume they communicated, but I did not have a nutrition counselor, and a psychological counselor, and so on working with me on the team as some of the bigger hospitals have.
Happy weekend!
Mary
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Hello again, Monica,
I do hope that you will soon sort out the plan for your radiotherapy treatment. The number of weeks that a patient has seems to vary. I had three weeks of radiotherapy with boosters and those boosters were integrated into the three weeks of treatment, so it just seemed like three weeks. I had to go to the hospital every day for five days, a break at the weekend, and then another five days, a break and then the final five days. Going to the hospital everyday like that is very wearing, but the treatment itself is over in a minute or two. I was lucky that my appointments were on time, so there was no anxious waiting. I used to arrive and be told to go to a changing room, where I took off my upper clothes and put on a kind of smock with a top that could be opened up for the radiation. I was given the smock at a pre-appointment where I was given advice about creams to use and advice about soap or aqueous cream.
Before I actually started the radiation I had to go and have the area to have the radiation mapped out on my body, as I was lying on a prototype of the actual radiotherapy machine.
Of course it is very important to take care of your skin during this treatment. On the whole, patients seem to find it easier that chemotherapy and it is a lot quicker, but it is nevertheless a damaging process.
I was lucky that I had no problems with burnt skin but I took great care to keep it moisturised. It is not without side effects and it can cause lymphoedema.
Please let us know all the details of what you are told, because, as you say, each country is different. The less treatment you can have to arrive at no evidence of disease the better, in my humble opinion.
You must be patient about getting back to normal. It will take time.
Wishing you all the very best.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for your post. I did know about the meaning of MO and RO, but I was curious about the two because here in England it was, for me, the oncologist who took care of all the chemotherapy and all the radiotherapy.
At the hospital where I had my treatment they did talk of the medical team and that there were meetings and discussions to discuss each patient. I think the team was made up of the oncologist, the breast cancer surgeon, the breast cancer nurse and the pathologist.
Back in 2005/6 I was not offered any shots of Neulasta. I do not even know if it was being used here at that time. I am glad that I did not have need of it, because I understand it causes people a lot of pain.
I hope you are having a relaxing weekend. Here in Exmouth it is quite hot and apparently we are going into a heatwave next week. There has been no rain here during June and we desperately need it for the grounds. I think the sun here makes people hyper and out of control. England is playing Panama today in the World Cup and everyone seems hysterical about it.
Brexit goes on and on and I think ordinary people are sick and tired of it all. It is a complete mess and it is two years today since we had the result. The people really voted to get out to control immigration but all the emphasis has been on business and one must not mention immigration.
That is all for now.
Love.
Sylvia xxxx
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Hi Mary,
We are having an unusually settled warm, dry, sunny spell here in the UK, where, as you probably know, the weather can change in a couple of hours. In fact it's downright hot at the moment, making me feel lazy.
Docetaxel starts on Friday. I expected so many bad things from the first lot of drugs and they didn't materialise so I'm worried in case it's payback time!
Summertime and the living is easy ... What a great song!0 -
Hello everyone,
I have just received my LymphLine summer edition of the newsletter of the Lymphoedema Support Network in the UK. There are lots of interesting articles in it. You might be able to read it online www.lymphoedema.org. There is an interesting article about chest wall oedema.
I hope you all have a good week. I am not looking forward to the forecast of a heatwave here this week and no rain in sight. May and June have been so dry.
Best wishes to you all.
Sylvia xxxx
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Hi Sylvia,
Thank you for the lymphedema website. I haven’t read the recent articles yet, but the section on “I think I might be at risk for lymphedema” was extremely informative. So much information that pertains to me that I was unaware of.
Great website!
Thanks,
Monica
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Hi, everyone. Just dropping in to catch up and see everyone's posts. I haven't been online much because we have been away so much; we attended three funerals last week alone. Two were in their 90s, but one was only 66 and died from long term complications after cancer surgery last year. So sad; only two years older than I. I saw my oncologist last week, and she ordered blood work to check tumour markers; the two are down but one is still slightly elevated, so she will repeat the blood work in two months. I am feeling great though. Am enjoying the flowers and pottering around the house; today is a rainy one, so I feel like rearranging furniture. Don't know how hubby will feel about that! I am starting to feel like my old self again. Have a great week, all of you, and wishing you all the best.
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Hello Everyone,
Cocooncat, I understand feeling betrayed by your body and mind. You will have more moments of happiness when your chemo is complete. In the meantime, you are right to make the most of your time now. Struggling is OK, and to be expected. No apologies are necessary. We're here.
Monica from CA, I read the same lymphedema info that you did, and I agree. I'm in Brea/Orange County, CA. Where are you?
Marias, You are a real scholar. I admire all of the historical research that you do. I hope it takes your mind off of worry.
Sylvia, Thanks for the lovely pictures of your garden. It's always nice to see those.
Mary, I love the idea of "bikes rule," and hearing about the decorum of Germany in regard to pedestrians. I'm not surprised to hear that rules "rule" there. I'll have to make a trip someday.
It seems there are specific places that all of the tourists visit, especially in Dublin. but I like to break away from that when possible. The parks everywhere were gorgeous in late May. And I already love Scottish culture and food, so I'm very happy when I'm there. We stayed in a very reasonable flat with a view of the Firth of Forth. We were able to cook our breakfast every day, and were very close to the train station in Edinburgh. We really enjoyed the long days, where it wasn't quite dark at 11pm. Someday I'll get some more pictures up.
I'll visit my oncologist for my 3 month follow-up next week, and I'm really hoping that there is nothing of concern.
Warm wishes to you all,
Pam
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Hi All,
Pam-I live in the SF Bay Area. I enjoyed reading about your travels. It DID sound like a trip of a lifetime. I look forward to when I am past treatment and can travel again. It is so inspiring to read posts from women on this thread who are so active and living their lives. It gives me hope.
CocoonCat- I understand what you are going through and have many of your same feelings. I am currently seeing a counselor to try to work through all of the anxiety and helplessness this dx brings. My friends and family try to be so positive with me, so I try not to be negative all the time. But the reality is I am so afraid. Finishing treatment should bring a sigh of relief, but for some reason I am more anxious. I can vent and whine and cry to my counselor without worrying about her feelings. And she is good at listening and reasoning and helping me set tiny achievable goals each week. I actually feel stronger and more in control after each session. I would highly recommend counseling if you are open to that.
I am exactly one week post chemo treatments. I thought I would feel differently. Like my old self, or something. Which is silly. Thank you, Sylvia, for reminding me it will take a long time to recover from chemo. I have been in treatment since February 5th and still have radiation to go through. But I HAVE started walking 2 miles everyday. With annoying neuropathy in my hands and feet, I think I’m doing pretty good on the exercise front, all things considered
I hope everyone is having an enjoyable week.
Monica
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Hello Monica, CocoonCat, 53Nancy and Pam,
It was nice to see you all posting and I hope others will respond to what you have said.
With reference to lymphoedema, I think it probably needs to come to the top of the agenda with our cancer treatment. If we end up with it it is not easy to deal with and more notice must be brought to how common it is and that it is caused by all three parts of our cancer treatment, surgery, chemotherapy (the taxane drugs) and radiotherapy. I have been reading about how surgery, be it mastectomy or lumpectomy, may cause it. It seems to me that lymphoedema in the chest area is more difficult to manage than in the arm, but neither of them is easy and care needs to be taken.
It would be good to hear from any patients going through lymphoedema, especially with TNBC as that is what our thread is all about.
To Monica, please keep us up to date with anything you learn from your cancer journey in California.
Fond thoughts.
Sylvia xxxx
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Hello Nancy,
I was glad to read that you are feeling great and enjoying your days. It is really good news to know that you are starting to feel like your old self again. Keep up the good work.
Best wishes.
Sylvia xxxx
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Hello CocoonCat,
I was sorry to read that you have been feeling miserable and withdrawn over the past few weeks and I do hope you will be able to pick up and feel more positive. It sounds as though you are suffering from the winter blahs.
I do hope you will get some relief from your shoulder pain.
Somehow you are going to have to try to stop worrying. Ask yourself, if there are any benefits from worrying and you will see that there are not. You have to keep looking forward with hope and optimism. Worry and anxiety will only bring you down.
The what ifs of life serve no purpose. You have to live the day and make the most of it. You are where you are and none of knows when our life will end, whether we have been through cancer or not. In life we make decisions and they take us up different paths. We always seem to think that if we have problems along certain paths, a different path would have avoided them, but we never think that the greener grass path in our minds, may have been much worse than the one we took. I was told that my breast cancer began when I came to Devon in 2002, judging by the size of the tumour, according to my breast cancer surgeon. Would I have developed it if I had not moved back from Canada to Essex and then to Devon? Who knows?
Concentrate on getting through your Taxol/carboplatin sequence and I am sure you will feel better once chemotherapy is behind you.
Thank you for your congratulations on the 13th anniversary of my diagnosis.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
I was glad to know that you enjoyed the photographs I posted. I think it is good to cheer up the thread in any way that we can.
Take care.
Thinking of you.
Sylvia xxxx
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Hello Monica,
I was glad to read that you have started some positive action post-chemotherapy treatment. Walking is very therapeutic and it is good to know you are doing just that, despite your neuropathy. Has your oncologist offered any advice or suggestions on how to help the neuropathy? My oncologist simply told me it was caused by the taxanes and that there was no cure. I have learned to live with it but I do think that lymphoedema and this peripheral neuropathy are big deals and it would be nice to know about them before we have treatment.
Take care and take things slowly. Your body has been through a big trauma.
Fond thoughts.
Sylvia xxxx
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Hi, Nancy
It's great to hear that you had a good doctor visit and are feeling like your old self. I'm sure your husband will get used to the rearranged furniture, he's probably glad to have your old self back!
As for the funerals popping up, I'm sorry for that, and they seem to be more and more frequent the older I get. It's only natural, I suppose, darn it! Some of them, for me, are people that I intend to go visit but somehow never quite make it, and then suddenly they are gone. It should be a learning experience for me, but day-to-day life has a way of getting in the way if we let it.
Talk to you soon, love, Mary
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HI, CocoonCat
I'm sorry you are having a lot of misery, I understand, when I was at my most depressed over everything I did not feel like writing because I felt I had nothing good to offer. That isn't quite right, though, even our bad experiences are better shared with others who understand, and may help others who feel as you do but are also being miserable all alone.
I'm sorry you are having a lot of shoulder pain, I had a shoulder injury during chemo too while sawing some branches off the driveway, and it caused me some a lot of misery as well. I hope the steroid/cortisone shot is helping you. Can I go in the time machine with you when you find it?
You are in early days, it is a gradual return, the return to strength and vitality. You will be better and have brighter days, I'm sure of it. The only thing we can't do is return to the time before all this started, so we have to do the best we can with what we are now.
I'm glad to see you are halfway through Taxol/Carboplatin. Try to find some consolation in the thought that you are doing all you can to defeat this cancer that invaded your body, but know that there will be better days again. Take it easy, and eat the best you can, try to keep up with nutrition and rest.
Glad to hear from you, we'll talk again soon.
Love, Mary
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Hi, Pam
I'm glad you had such a good time on your latest trip, I think it is so invigorating to see new things and have different experiences, good for body, mind and soul. I would like to go to Scotland someday, the cool weather appeals to me especially as we are told that today starts a heat wave here that will last into next week. We are just coming off a rainy spell, since Tuesday night I have had 6 1/2 inches rain, and it probably was more than that because some of the storms were so windy the rain was going sideways, and not into my rain gauge! Now all that moisture will come up in the form of steam, and it is going to be miserable for a while. We are usually feast or famine, weatherwise.
Good luck with oncologist next week, we are all glad when those visits come and go.
Talk to you soon, Pam! Love,
Mary
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Hi Monica
Congratulations on finishing the chemotherapy part of treatment! I'm glad you realize it will take some time to recover from that, my MO told me that in 6 weeks all the drugs would be out of my system. That may have been true, but the effects of those drugs linger much longer.
I also have neuropathy from the chemo, mostly in feet and legs, and hands too. It is so great that you are up to walking 2 miles a day already, do you notice your feet tingle more afterwards? I do notice that on days when I am very active they have more strange sensations once I sit down and try to relax.
I found myself more anxious too, when I finished chemo than while on it, generally speaking. I think it's just the feeling of being no longer in that routine and back out in the real world, it made me feel somewhat cut adrift. You will have to get into the radiation routine soon, I expect, and then you will have another goal to reach. When everything is finished, your goal can be just to get as strong and healthy as you can, and then you will feel better and more like yourself. I'm glad you have a good counselor to vent to, I did try that but the counselor I got was not much help to me, she was more into the cognitive behavioural stuff, and that just wasn't what I was looking for, I did not want to take homework home, I just wanted someone to listen. I have found much better listeners here than anywhere else!
I'll talk to you again soon. Love,
Mary
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HI, Sylvia
I was reading on the link to the Lymphedema Site that you posted, and came across an article about cellulitis. I think my leg wound was a stage of that, I have some pictures of it at its' worst and now. I will post later, I have to leave now for a while. I did see my doc at one point, he was talking about the connection with neuropathy and possible imminent blood poisoning, but I wonder if there is some lymphedema connection too.
I'll be back later about that. Have a great evening, love, Mary
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Hi all,
I am post Neo adjuvant chemo for TNBC heading to BMX in the next few weeks. I thought I would see if there was any preparation I could do and if there was anything to relieve the peripheral neuropathy. So I went and saw a physiotherapist who specialises in lymphedema. She has provided a set of simple exercises to prep for surgery, improve my range of movement and expand chest fascia muscles, which will hopefully help with recovery. She believes gentle movement into the nerve endings for feet and hands will help the neuropathy. Important not to stretch too far and damage nerve endings further. She also believes with exercise we can improve and proactively manage lymph drainage. I am not looking forward to surgery or being breast less and I am fearful of lymphedema. So the physio has been a good move - giving me something positive / proactive to do...0 -
hi everyone
It's freezing in Broken Hill as well so I know where u are coming from Cocoon cat! Hang in there winter is always the worst for me as well and living in a small town PTSD is a a constant thing!
I had the lesion taken off the side of my eye and after 10 days of sporting a black eye got the all clear with it. Continue to stretch have dry needling and massage for my aches and pains which appears to be finally working! Went through a pretty ordinary couple of weeks with muscle spasms and aches and pains which kept taking me to that dark place. Magnesium tablets also help so much with muscle cramps so it's onwards and upwards🤞
Onco appoint in a week which as usual terrifies me and then yearly mam inSept if all ok! I have decided to get LFTs done every 6 months soI'm not constantly freaking out! Aches and pains def worse in winter which is a good sign but still I stress and imagine the worst all the time. Will get screened for RA as well this time I think.Feeling well other than achy joints, have put on a couple of kgs and feel well other than muscle ache and anxiety! GLad Everyone is well. Off to see Pink n two weeks in Adelaide and really look forward to it
Much. Love
Kath
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