Calling all triple negative breast cancer patients in the UK
Comments
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Hi Maryna8, thank you for your lovely response. The hair initially was a big deal and it became less important as I found out it would be hard to keep it. You are right, there is no guarantees with ice caps especially with the regimen to fight back against TNBC. I do believe my hair will grow back and now I am looking forward to having my new hair next year
I probably should advocate for more hospitals to have the ice caps as part of the treatment for cancer patients. I wish I lived in Los Angeles when I found out they have places equipped with the technology in some hospitals. It's still not guaranteed that the hair will be saved, but it would not be a hassle to "try" to save it either, if you know what I mean. I have met a lady here where I live who was diagnosed with TN about 3 years ago. She's been very helpful throughout each step of my journey dealing with cancer, and she is very supportive too. I call her "my cheerleader". I am very grateful for the people I meet and the ones that come across with me daily. Everything happens for a reason...I don't take it for granted.
My mother lives in Brazil where I am originally from. Brazilian mothers are very protective and caring, and I wouldn't expect any other way from my mom. She is indeed a great companion; emotionally and physically speaking.
I do have a question for you since I didn't see that you had radiation on your profile. Was that an option? Was not needed? Can you tell me a little bit more about your case?
Thank you for contacting me. I truly believe we are all helping each other with our personal experiences and researches and this is so important to the overall picture. God bless us all.
Claudia
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Hello to all. Just finished rads, and have had a very bad skin reaction, though they say it's 'normal'. peeling and blistering so I'm lathered up with creams. This too shall pass. But overall I'm getting some of my energy back. I'm battling sore legs and knees from just the smallest of movement, was told need to move more. Hopefuly will get back to my nightly walks. Feet, legs so sore. All sort of kicked in right near the end of rads.
Any tips? Dr says to be expected.
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Hi Slyvia
Went out for a bush Barby on the weekend which was great! Tried to stay relaxed after my first dose of ac but last night 3 reddened pimples came up not on the site but the affected breast. Now I'm paranoid they are skin secondaries all ready! I'm very isolated here and gps don't know a lot so I've sent a pic of them to my dr in Adelaide to get him to look at. Wish I could conquer this horrible fear! It's soo frustrating
Cheers
Kat
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Wishing you all a great week full of positive thoughts of healing. Remember to be strong, be courageous, be humble, be kind, and don't be afraid of your fears. They exist to show your limits; not your capacity to overcome the facts. Believe that you are bigger than all of it, but accept the fact that there is a higher power that is the biggest among us all . Reach out to Him for mercy and He shall give you some comfort , reassurance that you are in the right direction and finally brings you somepiece of mind.
Gentle hugs from afar!
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need to think positive stuff from this day on! Hair started to fall out today and very scared about a thyroid problem i have had for years! Why do all these things keep popping into my head. Keep think about all the places this hideous thing can hide. Got to stop ova thinking!Had it biopsied in November and was fine. Once chemo and rads ova this thyroid is coming out! Need to keep focusing on good prognosis but sooo hard! Really down today
Cheers
Kath
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Hello Kath,
It is true that when starting treatment there is a lot to take in all at once, but you will learn to deal with things. For the moment all you need to worry about is getting to your chemotherapy appointment, relaxing while the drip feeds the drugs that will rid you of your cancer and you need to sit and try to relax while this is happening. However frightened and anxious you are, you have to remind yourself that this treatment is saving your life. Just do everything you can to keep yourself as well as you possible can through trying to eat healthily, perhaps take a little walk and try to be relaxed.
I do hope that going to work yesterday helped to take your mind off all this treatment, but please remember you are in a weakened state and do not overdo things. Remember you are very vulnerable to infection so try to steer clear of germs.
You asked about tips for a multi-modular thyroid while on treatment. Can you explain to us what this means? Do you have an underactive thyroid?
In order to know if there is anything to take in the way of herbal treatment, if that were me I would go to see a reputable herbalist or an alternative doctor specialising in herbs. During all of my treatment I took astragalus and pycnogenol to boost my immune system. It is up to all of us to decide what we are going to do to get through treatment. Orthodox medicine will tell you not to take anything.
Keep going. You are going to get through this.
Fond thoughts.
Sylvia xxxx
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Hello Claudia
Thank you for your post and the lovely photograph of you and your mum.
It was good to know that you have had no problem with lymphoedema. I saw some women at the hospital with serious problems with arms and hands all bandaged up.
I think wigs look so much more natural than scarves and they look very natural.
As for cold caps, it does seem to be quite a hassle and I do not think I would have liked it. My oncologist was dead against cold caps.
It is probably a good idea to ask your doctor about Neulasta or Neupogen to keep the white cell count up, as neutropenia is a serious condition which can land you in the hospital. Do not forget to ask about side effects.
Thank you for the link about nutrition. I shall have a look at it later.
It is very good to keep yourself away from people with colds and from crows in general. With a weakened immune system it is so easy to pick up germs and infections.
Let us know when your next appointment is.
Fond thoughts.
Sylvia xxxx
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Hello Valstim52,
I was sorry to read that you were having skin problems with your radiotherapy treatment. I did not experience any blistering or peeling, but we all react differently. I kept my skin well moisturised during treatment. What have you been advised to do to heal the skin? I used a special cream, aqueous cream, to wash in and also used aloe vera gel. I just had some reddening of the skin towards the end of the treatment.
It is good to know you are getting some of your energy back, but take it slowly.
Have you seen a doctor about your sore legs and knees? Do you think this has been caused by the chemotherapy? It is best to get everything checked out. Relaxing short walks might help. You say your feet and legs are sore, so I was wondering whether you should find out if this is a result of the Taxol treatment and it has just started to affect you.
What are you doing to try to take your mind off all this treatment?
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I was glad to know that you went out for a bush barby and enjoyed it. You need these moments of relaxation to get you through treatment.
I was sorry to read that you have three reddened pimples that have come up on the affected breast. You have not mentioned surgery in your details but you do mention no node affected, so I am assuming that you have had a lumpectomy. You should get the pimples checked out. Anything that does not seem normal should be checked out with your oncologist as it will be a source of worry to you. I hope you can get to see your oncologist. Here in the UK when I was going through treatment, patients were given a breast cancer nurse as a contact and I was able to phone here if I had anything of concern and she would phone me back and refer me to the oncologist or breast cancer consultant if she thought it necessary.
You have done the right thing sending a picture of these pimples to your doctor in Adelaide.
I am trying to sort out your situation with reference to doctors etc. I am assuming you are having your chemotherapy in a hospital or centre local to you. Am I right? If I am, is there not an oncologist there to deal with any problems arising with patients during chemotherapy? Is your doctor in Adelaide an oncologist or is it the breast cancer consultant surgeon who did your surgery? Usually the cancer specialists work as a team. My oncologist and breast cancer surgeon worked together and they and the cancer nurses had regular meetings as a team to discuss their patients.
Thinking of you.
Fond thoughts.
Sylvia xxxx
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Hello Kath,
I am so sorry to know that you are in such a distressed state, but I can assure you that things will get better. It is usual for hair to start falling out quite soon after the first chemotherapy session. That is why patients are told to have a wig ready or whatever headwear they are going to use. I found the best way for me was to wear a wig. It was very natural looking and it solved all the prior fear I had had about losing my hair. I let it fall out naturally and would just clear it up. I did not go and have it all cut off at the hairdressers and I did not shave it all off. There was always a stubble left. In my home and at night I wore a very nice ready-made turban, much like the famous French writer Simone de Beauvoir used to wear all the time. I found it kept my head warm in bed at night. When I went out or went to the hospital I wore my wig. If you want to feel as normal as you can, if I were you I would opt for a wig. If you have not sorted this out, make it your first priority. I am a great believer in doing everything in a methodical way, one thing at a time.
The next thing is to get the pimples sorted out. If it were me, if necessary, I would phone the doctor in Adelaide.
As for the problem with the thyroid, can you explain what exactly the problem is? You say that you have had a thyroid problem for years. What exactly is the problem? I know that you can an underactive or overactive thyroid and that this is quite common. I have a friend who has Hashimoto's disease, and unless she has thyroxine all the time, and sometimes boosted, she can feel so tired that she can barely get out of bed. Do you think you have an iodine deficiency? Iodine is not easy to get in the diet unless you are having seafood and seaweed in your diet. I think you can get iodine tablets. Are you planning to have your thyroid removed? Give us some more details.
I am interested in thyroid problems because I have friends with underactive thyroids and a niece who had an overactive thyroid at a very young age. When I was diagnosed with breast cancer, I was also discovered to have an overactive parathyroid and after my cancer treatment had finished and I felt able I had to have surgery to remove one of the four parathyroids, which had a non-malignant adenoma on it and was causing high levels of calcium to leech from the bones into the blood. After surgery the calcium levels in the blood returned to normal. An overactive parathyroid is apparently quite rare, but I think it is just under-diagnosed. There is research that shows a connection between breast cancer and parathyroid disease, so I have always wondered whether this caused my breast cancer. The parathyroid disease preceded the breast cancer and the consultant told me I had had it for some time. When we have blood tests here the parathyroid is not tested!
For the moment, concentrate on your breast cancer treatment and deal with the thyroid when you have recovered from all the treatment and have got your strength back.
Do you have family to support you? You really need someone close to you and reliable to help you through. It would be good to have someone to accompany you on your chemotherapy treatment and to give you moral support.
Try to do things to make you laugh and keep away from anyone or anything that brings you down.
I do hope that Hanieh will read your posts and post in to help you. We have helped her through her treatment and she knows all about the anxiety and fear that she has gone through and so she will understand what you are going through. It was the same for Amanda10. She had lots of fear and anxiety.
Stay optimistic. You are going to get through this.
I see from your details that not only have you not mentioned surgery, but you have also not mentioned the type of breast cancer. It helps us all to have the details so that we can consult them when reading and answering posts. Do you have invasive ductal carcinoma (IDC)? This is the most common kind and is used to describe cancers of no particular type.
Sending best wishes your way.
Sylvia xxxx
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Hello Mary,
Did you read through your last newsletter from Chris Woollams of Cancer Active? I thought it had some interesting information. I do think anyone who wants to be informed should sign to his email and then click on the details in to get even more information. That newsletter was dated August 1st.
Yesterday morning i was surprised to receive another email but looking at it more closely this morning I see it is dated June 15th 2016. I was wondering why it has popped up. It is entitled The Secret to making your immune system work. Do you think we have already had this one?
i do like what he says on this latest one "Stay ahead. Know what is new. Do not die of ignorance".
I hope to hear from you soon.
Fond thoughts.
Sylvia xxxx
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HI Sylvia,
I moisturized quite a lot during radiation. I was told otherwise I would have experienced the break in my skin sooner. it's ugly and painful but I can really see small improvements each day. I have calendula based creams and prescription silvadene cream. In addition I'm doing saline soaks which are soothing. I have 5 really open burnt skin areas.
So much to get my mind off, mets, will i ever feel good enough to get back to my routine. I guess I'm so tired of being sick and tired.
I am reading more. Doing some crocheting, just looking forward to this skin healing and I'll feel more comfortable going out. My neck looks pretty horrific when uncovered, and being uncovered is what is recommended.
My Mo thinks my leg/foot issues are a result of arthritis that showed on scans( I knew that already) and neuropathy. I'm on a medication that has helped my hand neuropathy but causes leg aches. Mostly it's foot ache/weakness/numbness. Classic neuropathy. Arghhhh. My visit to my PCP narrowed down the pain to one foot and more numbness and
On a good note, my hair is growing like fertilized grass. Yay. Doing small walks with my dog and in my garden. Thanks for letting me vent
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- I'm 42 years old was diagnosed in 2006 with stage 3 grade 3 breast cancer. I have the BRCA gene and had a DIEP mascetomy in 2010. In May this year I found out I was pregnant not any part of my plans but it has happened naturally we are very happy...however in May my CA 125 blood test for ovarian cancer was elevated. Since then I have had an abdominal and pelvic scan which showed no abnormalities which is promising but the blood test is still raised. Still being investigated for ovarian cancer..currently 12 weeks pregnant. Has anyone had similar experience I'm looking for support and guidance..
I have already spoken with my doctor and have a suggested plan for delivery. Thanks in advance.
0 - I'm 42 years old was diagnosed in 2006 with stage 3 grade 3 breast cancer. I have the BRCA gene and had a DIEP mascetomy in 2010. In May this year I found out I was pregnant not any part of my plans but it has happened naturally we are very happy...however in May my CA 125 blood test for ovarian cancer was elevated. Since then I have had an abdominal and pelvic scan which showed no abnormalities which is promising but the blood test is still raised. Still being investigated for ovarian cancer..currently 12 weeks pregnant. Has anyone had similar experience I'm looking for support and guidance..
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Hello Everyone,
I have a quick few minutes to post before bed tonight. I'll be going into work tomorrow, but I'm not sure how long I'll stay. Today was Taxol/Carbo infusion 10 for me, with 2 more weekly Taxols to go, and then 4 of AC at 3 week intervals. I'm looking forward to getting more good days in between the AC infusions, because now I only have 1 or 2.
The good news is that both my WBC, ANC, and hemoglobin counts are up a bit. The appointment was really smooth and quick, too. They gave me a long lasting Zofran anti-nausea med in my IV. I had a nice nap and my husband cooked a chicken fajita dinner and cleaned up, too. We took swing dance lessons (a very mild, gentle version - not the "toss you in the air" version that people tend to visualize) for about 3 years, but haven't practiced in ages. We did a short practice tonight and it went very well. We watched a little of the Olympics, which we're recording. Tonight was women's soccer, US vs. Colombia. We've seen a little diving, gymnatics, and vollyball, too.
It's funny, I have discomfort from standing - probably joint protests - and terrible back pain, but I can usually walk if I can rest. And the dancing went just fine. I'm going to try to keep it up. Also, I'm pre-surgery, so I'm trying to keep a little of my yoga conditioning with restorative classes and 22 pushups at a time when I feel good.
The oncologist visit last week made it official. He only wants to discuss one stage at a time, and I'm OK with that. The surgery will tell us a lot, but I do like to be prepared. He unofficially endorsed my BMX plan, but we're sticking to one thing at a time.
It's interesting, too, that he would prefer that I not pursue acupuncture during chemo, but thinks that acupressure is OK. He blessed my chiropractor visits and medical marijuana use, which surprised me. He seems pretty traditional and conservative. The marijuana I use is CBD heavy, which relaxes, eases pain, and helps with sleep. It is light in the psychotropic THC component which makes people high. I was never a marijuana user before, so this is new adventure for me.
Sylvia, I agree that this is just not the death sentence it once was, and I read about terminal cancer patients of all types whose conditions are treated and they are more chronic than terminal. I find a lot of hope there. I want to read more here and and the boards about the difference in treatment between the US and UK. It seems that fewer diagnostic scans (PET, Bone, Mugga, Ultrasound, CT, Breast MRI...all scans that I've had) are done in the UK. I wonder why? The proton beam treatment also sounds fascinating. I think it's amazing that you were able to get by on ginger tea for the nausea. I'm taking B vitamins for the neuropathy, and hoping that the excercise is helping as well. So far it's not too bad.
I think about cancer at night as well. I think it's perfectly natural when the world gets quiet for that to dominate my thoughts. I love having these forums to get lost in, and the many, many books I've indulged in lately to help me focus and feel better. I think unfocused fear is one of our biggest enemies. Along those lines, it's great to hear about the trips to Aruba and Alaska. I look forward to hearing more.
As always, Syvia and Mary, you provide lovely info and support to everyone here.
-Pam
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Hi Sylvia, and all ladies in the group,
I was battling a low white blood count on FRiday with appointment scheduled for my 2nd chemo on MOnday. So i decided not to cancel the MOnday appointment; instead, I talked to my friends and even googled ways to boost my WBC. I followed the food regimen increasing the amount of each items including Garlic - not the raw version. The one baked and it turned out delicious... long story short the doctor said I jumped from 0.78 to 3.58 between Friday to MOnday.
Funny thing was that when I told her what I did foodwise, she seems in disbelieve and said that WBC die and regenerate too fast every 4-7 days. I was probably luck to have been in between the growth of the cycle.... what do you all think? I couldn't resist and said " if i am going to rely in what I eat ( food) to make my numbers go up overall to keep me healthy, why can't I think that food was the remedy here?
I am a little disappointed... let's see round 3 in by the end of the August (29). Crossing my fingers and I will have lots of cooked spinach, probioticos , and yes.... GARLIC !
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hi Slyvia
My cancer was labelled as no particular type so I guess it's a ductal! I have an under active theyroidvwhich I have been treated for for years and a multi nodular goitre which was last fine needle biopsied on 23/11/15 which was fine. Guess im just looking for places for the little bugger to hide but I'm going thru the right treatment regime and need to be logical. I had a good diagnosis and negative sentinel glands but I'm definitely getting it out after treatment.
We have an oncologist that visits once a month and a Magrath breast care nurse who is currently away. The oncologist is not specialised in breast but links directly to the breast oncologist at the Royal Adelaide Hospital. I think some of the pimples were my drain site and a feckle and skin tag. Not sure tho My surgeon wasn't overly alarmed and said to keep an eye on them.that it may be folliculitis however being a nurse first thing I thought was skin mets
My visit to the psych today helped a little but not a lot! She spoke of being logical when I panic and bring it down to basics. Keep telling myself clear margins no sentinel involvement so think logically mindfulness and one day at a time. She also felt that I was clinically depressed so may need some meds which she is talk to my gp about. Not sure what I can have with chemo .In the meantime I am nowconcentrating on my new mantra. Think logically and keep repeat the good diagnosis my dr gave me of 90% non re occurance. I had a better afternoon and kept myself busy with daily tasks and kept say to myself I will do this. Not sure how long this will last but everytime I think of my beautiful grandsons it makes me more determined. Hopefully I'm starting to get stronger and should think myself lucky it was caught early and I vow I will not read anything negative about triple negs again. Thank you for being a voice of reason . Hopefully I am starting to turns a corner as this has all occured ova weeks but I am still so very scared
Cheers
Kath
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HI, Claudia,
you asked about my lack of radiation: While I was doing my chemo, my MO told me that he didn't think I needed radiation. I had a very hard time with chemo, and was happy to hear that, even though I would come here and read about almost everyone having radiation after chemo. My MO retired on the day of my last chemo treatment, I did not learn that was going to happen till about halfway through. So after I was finished, I got a phone call from the Radiation Oncologist (RO), who I had met at first when they still thought I was ER+ because of my age(61) and ethnicity (Caucasian), and lack of family history of cancer. His nurse wanted to arrange my radiation appointments, and I told her the MO said I didn't need it. Also at that time, I was having LOTS of arm, shoulder, and back pain; radiating, flaring pain, it was awful. So they reviewed my case and came back and said that because of my present physical condition and other considerations, they decided the radiation might cause more harm than good. In hindsight, I wonder if that was the right decision. I would probably have fought it at the time though, I was just that miserable.
A little later I had an MRI on my shoulder, and it was determined I had torn a rotator cuff during chemo, probably while sawing a small tree that had fallen on our driveway. I also have neuropathy from the chemo, and after chemo it seemed to be all over my body causing havoc with any body part that had the slightest thing wrong with it. Thus, it exacerbated the shoulder pain, the surgery site pain, and osteoarthritis pain. It did die down after a while, I still have the neuropathy and now the thing that bothers me most about it is the weakness it causes. With probably a bit of chronic fatigue thrown in for good measure! But, I am here to complain about it, that's the good part!!
I read your post about regenerating the WBC cells, I certainly think that eating good food can't hurt, and possibly it did help in the process. Garlic is one of the superfoods, I think! I would also have very low WBC counts during chemo, my BP would go scary low, and I would get the Neupogen/Neulasta shots after every round.
Talk to you soon,
Mary
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Hi, Sylvia
My family living around me here and I have had out-of-state family members with us for the last 10 days. Lots of people arriving and leaving at different times, lots of little ones, and lots of good visits. The children were mostly rambunctious little boys, their energy just amazes me! The last visitors left yesterday and I had some time to read up on some of the posts here, and some Chris Woollams.
He touts the benefits of pomegranates. I have never consumed much of that, I always thought they were more trouble than they were worth, but after reading his article I may have to rethink that. When my visitors left, they left me with a large jar of unsweetened pomegranate juice, so I can start on it right away, nice coincidence.
Once again, he talks about the issue of Vitamin D. I am supplementing with 5000 mg of D3. He says to do sunshine in the summer months, but we have had such a hot summer that I am not always in the sun long enough. You are more likely to find me in the shade or out on a cloudy day!
He talks about the Rainbow Diet, which has been discussed extensively before. You believe, and I agree, that it is the best way to eat. He has links posted to order his books on the Rainbow Diet.
He talks about a lung-cancer vaxine, which is only available in Cuba. I thought it very interesting that a US man has to travel to Canada, and then fly to Cuba, to take advantage of this medicationl They are crediting this vaxine with keeping him alive for an extra 5 years so far. When I think of a vaxine I think of something you take once or twice and then done with it, but apparently this vaxine works as an immunotherapy that needs to be replenished regularly. It's too bad our government drug overlords don't approve some of these drugs faster, especially since the people who need them have usually nothing else to take.
I think I would definitely think twice or 3 times before taking a young person to get the HPV vaccine. It sounds like it has not been tested enough for adverse side-effects, and apparently almost not tested at all on young boys; yet it is still being recommended! Why not make getting drugs easier for people who have nowhere else to turn, rather than possible harming young people?
I found the article on Chemosensitivity Testing very interesting. If that had been available at my diagnosis, I wonder if I would have done it. Knowing what I know now, I would definitely have done it. But at the time, the side effects were made known to me, but were downplayed and in my state of panic I did as I was told. And being TNBC, the drugs I had may have been recommended anyway. The article doesn't get into the different types of breast cancer. I'll never know how it would have gone, but I do hope this becomes more widely available and used.
Lastly he talks about a link between oral hygiene and gum disease and pancreatic cancer. It makes sense to me, there seems to be a link also between heart problems and mouth and gum bacteria. That is something we have some control over, in my case I had my gingivitis cleaned up years ago and I visit a dentist alternating with a periodontist every 4 months. Plus it just feels better to have as healthy a mouth as possible!
Well, I think I covered his whole article. I am seeing the June article, but I am not sure if we ever discussed it. He goes into length on his Brexit opinion, among many other things. That will have to keep for another day!
Talk to you soon, Sylvia. You are certainly helping a lot of people here these days, as always you are the calm voice of reason!
Love, Mary
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hi I'm day 7 from first dose AC and achy in spots all over. It's gets hot then aches and moved to another spot. Is this a side effec
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Hello Kath, Mary, Claudia, Pam, Valstim,
I have read all your recent posts but i have not had time to answer, but I shall be trying to do this over the next few days. Just relax if you are going through chemotherapy or radiotherapy. You can all get through this challenging treatment.
To 4everstrong, I hope your radiotherapy is going well.
To hasnade, I do hope all will work out well for you. I am not sure that I can answer your question. I can understand that you are concerned about your CA level of 128, but, you should be glad that scans show you have no abnormalities. For peace of mind you need to get to the bottom of this. I feel that only a doctor can help you in this matter, and perhaps you might want to get a second opinion. You should also have another blood test as I think these levels can fluctuate.
You have been through breast cancer back in 2006, and have come through it. You know that if there is cancer it is best to get things sorted and get on with treatment straightaway. It seems to me that it should be good news for you that no abnormalities have been found.
You did not mention whether your breast cancer was TNBC.
You are very welcome to stay with us for support and comfort. In the past we have had two women who went through their breast cancer treatment with us and were also both expecting babies. They were Mumtobe (Carol) in Ireland, and Marymargarethope in England. They did have breaks in their treatment, and went on to have healthy babies. If you click on their names on the Member list, you will probably be able to trace back their posts on this thread.
Let us know how you get on.
Sending you bet wishes.
Sylvia xxxx
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Hi, Kath
Sorry to hear you are having hard time dealing with everything, you are going through a very stressful, life-changing event so that is very normal. And yes, it is life-changing, but not life-over. It sounds like you have a good prognosis, you just have to get through the regimen laid out before you. Being a nurse you have seen a lot, I can see where it would be good to have the extra knowledge but then sometimes maybe it's too much knowledge, right?
As for the achy, hot places on your body after 7 days, I would lay it at the feet of the chemo drugs. My stint on chemo is rather blurred in my mind, but there were many things that would pop up and then die down and be replaced by something else. These are very strong drugs. I also became more fatigued as things wore on and thus would spend more time sitting/lying around and being conscious of physical symptoms. i had some osteoarthritis going in and this seemed to be worse at times. Just know that it will pass, and you will get through it all, some things may linger longer than others.
I can't say much about your thyroid condition, I am a little low in that area too, but not low enough to medicate.
My husband always wanted to take a trip to Australia at some point, we didn't make it while he was alive. Sounds like it would be a fascinating trip. One of the women who posts here sometimes (Adagio) is going on a 3- month trip there leaving in September. What season is that in Australia, would it be spring? You can see I don't know much about it! Do you live rurally?
Hope things go well for you from here on, and someone is always around here at some point to keep company.
Talk more later, Mary
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Hi, Hasnade,
I just want to echo what Sylvia said, we have had women here who bore healthy children while dealing with chemo, rads, etc. I am sure it was stressful for them, but all worked out okay. Sorry you are having to deal with so much at this time, so much uncertainty is the worst! I think you will have to put yourself in the hands of the best docs you can and go from there, and then one day you will be on the other side of it all. Do you have other children?
Please feel welcome to talk anytime and let us know what happens.
Talk to you later, Mary
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Hi, Valstim,
Sorry you are having these skin issues from rads, sounds like you are doing all the right things.
I also had some osteoarthritis going into treatment, and have neuropathy after finishing treatment. What I can say about that is that the neuropathy pains during and right after treatment seemed to travel around my body willy-nilly, at times settling here and there. At times it was difficult to tell where the pain was coming from. You are fortunate to have an MO who is advising you with it. I found that my MO is not interested in anything but cancer and rather brushes off these secondary issues. And yet they affect my life on a daily basis. But, I am here to talk about it, that's the important thing.
Glad you are watching your hair grow
and are out doing walks, I bet it is hot in NC. We here in MO have had a long, hot, wet summer, always very humid too.Take care, talk soon, Mary
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Hi Mary
Yes it's sooo hot here. So I go very early in the morning it helps get me moving. So glad you wrote that your pains seem to move around. That's me exactly. I broke my knee cap (ouch) 3 years ago and everything seems concentrated in that leg. My Ortho Dr says I'll need a knee replacement soon. So that is possibly making it worse.
Skin is angry but not as painful. My RO says for the two weeks after rads it will rage and then will get better quickly.
Hasnade just piggy backing on what has already been said. Once you know what exactly is going on (and sometimes that's not possible even with all the technology we have) then you will know how to proceed. Lending support to you from afar
HI Kath, I had itchy sore spots on my feet and legs during AC chemo. It subsided later in the 2nd week between my doses. Remember your body is being assaulted by an army of drugs waging war on your behalf. It takes a while for our bodies to adjust as much as we individually can, therefore some have certain side effects and others have something different. The hot spots could be your bodies way of 'coping'. Just my untrained, observation.
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Hello Valstim52,
From what you have said you are doing everything that is right for your skin to get you through radiotherapy. I know that calendula is said to be an excellent cream. I do not know silvadene cream. What is the base for it? Do those saline soaks sting? I am so sorry that you have five really open burnt skin areas. That does not seem right to me. What does your radiologist say? When I was going through treatment my oncologist told me that care needed to be taken to avoid inflamed lungs. You must have had nearly three weeks of treatment now. When do you finish?
I think we all know that the taxanes, Taxotere or Taxol, cause neuropathy in the hands and feet and that this neuropathy seems to take different forms. I have it in my feet and it takes the form of numbness and a feeling that I am walking on glass or stiff tissue paper. I have no pain, but I always have the feeling that the soles of my feet are stiff and dry. However they are not and I moisturise them every day and sometimes twice a day, but it does not relieve the feeling. I see a podiatrist regularly and she has told me there is no cure for neuropathy. She has tested me with needles and there is no feeling in my feet. My oncologist has told me that the neuropathy was caused by the Taxotere I had during chemotherapy.
As for my hands, I do not have neuropathy as far as I know, but after all these years since diagnosis and treatment, they can still go bright red without warning. This usually happens if I feel hot or stressed. For both my hands and feet I regularly use Dr Organics extra virgin coconut cream. For my feet I also use this as well as an excellent foot care cream, brand name CCS. It says it is the number 1 foot cream in Sweden and is used by podiatrists and is suitable for diabetics.
What kind of medication are you taking to help you with your neuropathy? My information is that there is nothing.
You must learn to live in the here and now and forget the what ifs. They serve no purpose. You will have a life after your treatment finishes and you will get back to a more familiar routine.
I can understand that you are tired of being sick and tired, but hang in there as this cancer journey will come to an end and you will get your life back.
What are you reading? You need to find things that make you laugh, as laughter boosts the immune system.
It does seem strange that in order to help your neuropathy you are on medication that is causing you leg aches. I would love to know what the medication is. Is it something that is compatible with arthritis?
I was glad to know that your hair is growing well. That is something about which to be happy. Losing our hair is so traumatic for us and I told myself during treatment that the drugs must be really toxic to make all your hair fall out, followed by loss of eyebrows and eyelashes, not to mention the rest of our body hair.
Enjoy your short walks with your dog and enjoy your garden.
Why not post some photographs of your dog and any flowers. Photographs are good therapy on the thread.
I hope we shall hear from foreverstrong in Paris France, as she is also going through radiolotherapy.
Fond thoughts.
Sylvia xxxx
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Hello Pam,
I do admire you for going to work during treatment. I think it must take a lot of courage and stamina.
It might be interesting for you to post your experiences going through this, especially of the Taxol, as Kathseward (Kath) in Australia and Clauclau (Claudia) in California, US, are also going through chemotherapy, so that makes three of you and all of you have Taxol in your regimen. It would be interesting for all of us to hear about your different experiences.
It sounds as though you are doing well and that your counts are staying up. You seem to be very active as well. Remember not to overdo things as the effects from chemotherapy tend to build up as time goes on.
You seem to be doing everything right and getting some enjoyment out of life during the very trying time of chemotherapy.
Yoga is said to be very beneficial during cancer treatment, as is meditation. This is what a lot of patients on this thread have said.
I think your oncologist is very wise to say he wants only to discuss one stage at a time and I am glad that you are alright with that. If you try to overwhelm your mind with everything together, you will just feel muddled. You do not need over information, just the basics to cope with what you are going through at a particular time.
Acupuncture is not usually advised during chemotherapy. It is to do with piercing the skin and causing an infection. I took oral Iscador (mistletoe) during all my treatment, but was told not to have it through injections for the same reason.
I think you are right about the UK. It is a different health system to the one you have in the US. Scans are give here only when absolutely necessary. That suited me fine, because I am wary of scans that expose an individual to radiation.
I think when first diagnosed we cannot get the cancer diagnosis out of our minds and it is especially bad at night when all is quiet and still. I am so glad you find the forums helpful.
Tell us something about the books you are reading.
That is all for now.
Fond thoughts.
Sylvia xxxx
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Hello Amanda10,
We have not heard from you in nearly a month so I am posting to say that I hope all is well. Have you gone away somewhere to get some of that well needed sunshine and to get away from all the problems in the UK I need you to keep the Brits side going.
Fond thoughts, Sylvia xxx,
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Hello Claudia, Kath and Mary,
I have not forgotten you. I am just working my way through the most recent posts of order of their posting, so I still have to catch up with the three of you.
Mary, I really appreciate all the effort you make on the thread and all the great support you give.
I have been having one of those mornings in our apartment block to get a technician in to resolve a problem of a breakdown with the communal television system. It has swallowed up my morning so I shall try to answer all three of you this evening.
I am so proud of you all and the great posts you are sending.
Sending you best wishes and talk to you later.
Sylvia xxxx
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Hi Sylvia and hi to everybody,
So I had my 2nd round of chemo on Monday 8/8. Thank God the WBC went up on time and the treatment wasn't interrupted. I tried to credit the fact that I focused on foodsthat help to boost the immune system , but my MO didn't seem to be thrilled about my efforts. She says the WBC die and regenerate fast, and I was lucky to be on the high count on Monday. Any thoughts? Thanks Maryna8 for your comments on food ( and superfood) and for sharing your radiation experience.
I also noticed that it took me almost the entire week to feel a little better this time - ( meaning less nauseated). I think I have bounced back faster from the 1st chemo ... Is that right or do you think it's just the way I think ? Is chemo cumulative on the body? Anyway, I am almost feeling normal again, but still feeling tired and nauseous - despite being on medication every 8 hours! I like to think that feeling good it's just a day away - whichever day it might be.
I called the Cancer society to discuss about radiotherapy with TN among other things, and after one hour talking I got an appointment through the American Cancer Society called " look good, feel good". Apparently, I will receive tips on how to emphasize my eyes, redo the eyebrows,and apply makeup in general to look good. I am 95% hairless, and it's time to boost my confidence level. I am excited to be part of the program. Anyone familiar with the program?
This month is my birthday month ( 8/25) and I have always celebrated it with lots of friends and family. It's almost the same as being in the middle of a crowd, so This time I am a little afraid to be among all these people and I decided to take a notch down. It will be a wig party for girlfriends only. No husbands and no kids. Also, instead of gifts, I created my own website and signed up for donations to the Cancer society. Let me know if any of you are interested in participating to the cause. I will forward the link when I have it. For some reason the website had me on previous address, and since I moved out I need to rectify the correct address - in case some relatives want to send contributions at the old fashion way!
I am counting down my AC dosages: 2 out of 4. Hooray !! And I am still debating on having radiation or not...so far I gather that doctors are calling me young as the main reason to have radiotherapy. Not sure it's worth the side effects of it...
Have a wonderful weekend,
Clauclau
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thanks Slyvia and everyone. Day 7 today post first ac dose and very achy around the shoulders particularly and ribs but managing well with panadol. Keep try to think logically that with good prognosis clear margins clear MRI of chest and abdo and ct clear and sentinel nodes clear but still very panicky with every ache. It has been a wild ride over the last 5 weeks. Preparing for my next round in two weeks and tryingbtonertitevan essay for my masters! Tough work. Hope everyone is well
Cheers
Jath
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