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Anneemay
Member
since
29-01-2016
120
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8
Hugs
08-09-2017
01:55
1 Hug
Well the weather is reflecting how I am feeling right now miserable and I think possibly a damn good cry would clear the air. I apologise for being so negative as I normall try to keep this disease in perspective and carry on with getting on with life. I saw my oncologist yesterday for review, following discontinuing Paclitaxol chemo last month as the recent CT showed further progression in the liver. I have also had radiotherapy to my right shoulder and spine due to pain which is still very evident after just over 2 weeks. The plan had been that I would commence Eribulin following a holiday that both consultants had said we would benefit from. So we booked a weeks holiday to Lake Garda Italy by coach and are due to go next Friday the15th we have been so looking forward to getting a way. However after talking about my shoulder and arm re radiotherapy she asked me about my eyes, specifically how long my left eye had been smaller than the right. So now I am waiting for a urgent brain MRI to see if there are any mets there. I also mentioned that I have been getting SOB on excertion recently since stopping chemo. I do have a known right pleural effusion but again has this worsened since stopping chemo? She has also requested a CXR to see if this is the case and if so this will require draining. Now I am in limbo waiting on a telephone call re appointments as until we know what we are dealing with I can't move on and am really anxious about whether I will be well enough to go. Ann xx PS Big Hugs to all who are also feeling low at the moment this disease is constantly giving us highs and lows in our lives. Two steps forward and three back !!!
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03-09-2017
01:03
1 Hug
I have posted previously on this thread and received good advice but my sbc has progressed further so here I am again. I have booked a weeks coach holiday to Lake Garda with my husband later this month and have ordinary annual travel insurance with our bank but this does not include cancer related problems which may or may not occur. I was diagnosed September 2015 with secondaries in my pleura, lung and bones and have been on different treatments since then. My CT scan in April showed progression to my liver, left axilla lymph nodes and uterus and started weekly Paclitaxol in May. I was also having pain in my right shoulder MRI in June showed deposits in my shoulder joint and referred to another consultant for radiotherapy. My recent CT scan at the end of July showed further progression in my liver, no evidence in the uterus and all other areas stable. The Paclitaxol was discontinued as a consequence of the liver progression and I received radiotherapy to my shoulder and T3 vertebra in the spine nearly 3 weeks ago. I will be seeing my oncologist on Thursday to discuss next chemo treatment probably Eribulin, she was aware when I saw her last month that we were planning a holiday prior to starting treatment again. However I am a bit concerned that I have not got adequate insurance cover now, I have still got pain in my shoulder although not as bad as it was and I am on twice daily opiates to help with this and take short acting opiates for break through pain. I also have lymphodema of my right arm and wear a compression sleeve, also have some peripheral neuropathy especiallly in my right thumb from the se of Paclitaxol. I have also noticed that since the chemo was discontined I have have recently become SOB on excertion and plan to discuss this on Thursday, as I am not sure whether this is due to worsening of the pleural effusion that has always been evident on scans. We are not planning to walk for miles or climb any mountains when we are away. Having said all that I feel fit enough to travel and everything else is functioning normally, well as normal as can be expected. Also at the moment apart from monthly Denusumab which is due next week and the regular opiates, I am not on any cancer treatments so what do you think of my chances of getting further cover to include my secondary diagnosis and related problems. Any suggestions or advice gratefully received. Ann xx
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30-05-2017
10:19
Rosie65, I have used both Corsydl and Difflam in the past when on oral chemo, I found alternating them worked for me and also using a non alcoholic mouth wash regularly during the day especially after eating helped as well. I had my weekly Pacitaxol today no.3 and felt really weary after, so came home and rested my eyelids for an hour or so. This rejuvenated me, hubby prepared and cooked dinner which was nice and apart from feeling achey around my shoulders, back and arms I am not feeling too bad. I am looking forward to going up my daughters for a few days, she lives in Redditch, it will be lovely to see my 2 granddaughters and generally catch up face to face with them all. Hubby will be totally capable of looking after himself so no worries there. You have to snatch some normality when ever you can and I have over a week off treatment so I am going for it. I can't stay any longer as I have appointments next week, 1 on Monday to have a PICC line inserted, Thursday to see oncologist and Friday bloods prior to treatment the following Monday. Hugs to all Ann
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28-05-2017
09:19
Thanks for the welcome, I also had a big decision earlier this week as to whether to have my hair cut as it had started to get a bit tatty around the edges. I hadn't got a lot but it had got thinner from previous treatments. I went for it and glad I did rather than wait for it to fall out. I also treated myself to a couple of hats from a well known store which were in the children's department and fitted well. Bloods checked yesterday and whilst there asked the nurse if she knew about my treatment plan. She said that it was indefinite or depended on how I tolerated SE. Feeling a bit anxious this morning after I have thought about this, does this mean I will be on this treatment forever as there is no alternative. I have had 2 different oral chemotherapy's and was unable to tolerate them and Tamoxifen failed. Ann
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26-05-2017
07:42
Hello, I started weekly Pacitaxol on the 15th so have had 2 treatments so far, 3rd one due next Tuesday. Not feeling to bad at the moment, appetite good so eating well with no nausea. Tend to get a bit achey on day 4 not sure whether the gardening is helping to contribute to this though. I have noticed that my appointments have a break after the 3rd treatment for a week, I don't know if this is usual. I haven't been informed by my oncologist how long my treatment plan is but looking through the forum 12 weeks has been mentioned. Ann
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04-05-2017
06:15
Thank you to everyone for your support and understanding, Barton,I believe Marie123 was asking about Falsodex. Also my oncologist has said that she would not use Cape on me again even on a lower dose because I was so ill on it, possibly due to a lack of an enzyme called dpd which prevents my body metabolising the drug. She said that I was the worst case of ilieitus she has seen in the 12 years that she had prescribed Cape !!! So that avenue is not open to me. Ann xx
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03-05-2017
11:25
Feeling more despondent today following a trip to the hospital yesterday. My oncologist had arranged a ultrasound of my left breast and axilla to give her more info. I ended up with additional mammography and biopsies to both areas. I have a small nodual underneath my left breast on top of a rib which, you would not consider breast tissue and enlarged lymph nodes in the axilla. Results won't be known for 10 days for my oncologist to determine whether my planned treatment is the way to go now. So more uncertaintity over the next 10 days equals more anxiety, which occupies my daily thoughts. I may discuss getting a second opinion with my oncologist just to explore every avenue open to me. Ann xx
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01-05-2017
12:35
3 Hugs
I am going to have a rant about my own body, I know it's emotionally negative but I need to get it out of my system. My recent scan has shown progression of the disease from my pleura,lungs and bones, to liver,left breast and axilla lymph node. There is also something going on in my uterus, although I am not showing any symptoms apart from increased pain in my back and right side. This could be due to pleura effusions that are increasing since having the Pleurx catheters removed at the end of January. The scan I had in December following x 2 cycles of Cape showed that I had responded positively to the treatment with no new disease detected, unfortunately I became very ill needing to be hospitilised with Ileitus caused by the Cape. My oncologist prescibed Tamoxifen as the scan was so positive and the recent scan was to see how I had responded to this treatment. The reason I am so angry is that if I had been able to tolerate the Cape, which had seemed to be effective in holding the disease and improving my out come, I possibly would not be in the position I am now. I am now scheduled to start weekly Taxol infusions on the 15th of this month to hopefully stop the progression and any symptoms that may occur. I am trying to prepare myself mentally for the treatment but finding it difficult as I feel my body keeps letting me down. I have never smoked, have tried to live a healthy lifetyle with diet and regular exercise and am not overweight. So I keep asking the question what else could I have done to reduce the risks. The only conclusion I can come to is it is in my genetic make up, as I have 4 sisters who have been diagnosed and treated for BC. None of us are Brach 1 or 2 so we have signed up to the Guy's Genome research project to try to identify whether we have a faulty gene. We won't get any answers if any for 2 years though. Rant over and feeling a little better. Thankyou for listening. Ann xx
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30-04-2017
03:32
I have ordered some CBD capsules from a UK company to give them a try, they are 10mg ones which they suggest as a starting dose twice daily. I am hoping they don't upset my tummy to much,as I am susceptible to IBS. I did a bit of research on this company and their products,which include a Body Salve to massage into painful areas so I may get some next time. Ann xx
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30-04-2017
03:21
Yes I did, they both had a story within a story which made them interesting to read. I think I preferred The Kashmir Shawl as I thought it had a bit more pace to it and the characters more interesting. I am also ploughing through the free books on my kindle but I am open to any suggestions. Ann xx
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29-04-2017
11:29
Thank you for all your replies I am seriously considering using the CBD oil, the way I feel is what have I got to lose and hopefully it will keep the neuropathy under control. Ann xx
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28-04-2017
05:21
Can I join this thread please, as I will also be starting Paclitaxol in a couple of weeks for secondary BC. My recent scan has showed progression, I have tried oral chemo and was very ill with them leading me to be hospitalised. Hormonal treatment didn't prevent the progression so hence this plan of action. I originally had ER positive invasive ductal CA breast in 2002, treated with FEC and radiotherapy. This developed into metastatic BC September 2015 in the lung, pleura and bone. The scan I had this month shows progression to liver, left breast and axilla lymph node. There is also some suggestion of something in my uterus. Apart from some pain and discomfort in my back and right side, which maybe due to pleura effusions reoccurring following removal of PleurX catheters, I do not have any new symptoms. My oncologist examined me yesterday and couldn't find anything obvious on palpitation. I am having a ultrasound next week to have a better look at my left breast and axilla area. I am trying to get as much information prior to starting Taxol and I was very interested in the mention of using CBD oil for Neuropathy caused by the treatment. Where to purchase some, it's effectiveness and whether it has been recommended by your respective oncologist. My younger sister is still suffering from neuropathy following FEC+T chemo. last year so another reason for my interest in this treatment. Ann
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10-03-2017
10:29
Reading through the recent postings regarding tiredness, I can totally relate to this, although at the moment I am sleeping reasonably well during the night, apart from a couple of trips to the loo. So why I ask myself do I feel so tired during the day and have to motivate myself to get on with day to day tasks. By early afternoon I am yawning away but not able to sleep. I positively look forward to when I can crawl back into my bed around 10ish but sometimes earlier. I am on 4 weekly Denosumab and Tamoxifen so can't blame it on chemo. that some of you are having to deal with. My husband who is 7 years older has got more energy than me which is very frustrating, although he is understanding, I'm sure he doesn't fully appreciate the tiredness or general fatigue that I feel. Well the sun was glorious yesterday and I manage a few hours tidying the garden which was therapeutic, although I ache a bit this morning, so I must learn to pace myself in future. Ann xx
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07-03-2017
04:56
I have downloaded both books as I couldn't decide, shall we review either or both at the end of the month or is that to early. Ann xx
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07-03-2017
04:47
Thank you Stresshead for your reply, I saw the registrar last Thursday who had done my surgery and removed the catheters, he was very pleased with the CXR that I had as it only showed a very small effusion on the right side. I asked him about the pain I was having, which incidentally is still a problem, but he didn't feel that it was anything to worry about so he has discharged me. So the weight gain must be the cakes and chocolate I have been consuming and possibly the Tamoxifen. I will be having a CT scan next month to check my progress and to see if the Tamoxifen is doing its job. It will also hopefully put my mind at rest if this pain is still evident. Ann xx
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27-02-2017
04:04
Can I suggest a couple of books if Waffles has not got any in mind at the moment. The Muse by Jessie Burton or possibly The Kashmir Shawl by Rosie Thomas, not sure what everyone's taste is or whether they have been previously read by members. I don't mind trying either as neither are the genre I normally read. Unless anyone has any other suggestions. Ann xx
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24-02-2017
04:39
I had my PleurX catheters removed 5 weeks ago because they were possibly a causative factor in the pain and spiking temperatures I was having. They had been in for nearly 10 months without too many problems, I was still draining approx. 500 mls from the left side weekly, but none for a couple of weeks from the right. I had previously had surgery to my right side to stick the pleura but it was not totally successful. I was reviewed by the consultant following CXR and she felt that the catheters needed removing because of the infection and that I should be able to manage without them now. I was also commenced on Tamoxifen 6 weeks ago by my oncologist to add to the Denosumab I have been on since Dx Sept. 2015 with pleura,lung and bone mets. My problem is over the last couple of weeks I have developed a painful ache in my right side around the lower ribs area,which does not bother me too much during the day, but is very apparent when I change position in bed at night, worse when turning over from left to right. I have now started getting twinges in my left side now around the same area. I take regular strong pain killers twice daily but they do not control these symptoms. I am not unduly breathless which was my main symptom initially and am able to function normally although I do feel tired most of the time. I have been slowly gaining weight but don't know whether it is because I am eating well and on supplements or the fluid is returning in my pleural space and causing the pain, or could it be the se of the Tamoxifen. I am a bit anxious now as I have had 2 lots of oral chemo to try to dry the effusions but I was not able to tolerate them and had a severe reaction to them. I will be seeing both consultants next Thursday so I hope they can give me some answers. I am hoping that I will not have to have the catheters replaced but I don't know what the alternative will be if the fluid is still accumulating. I just felt I needed to share my anxieties with friends who might be able to help. Ann xx
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21-02-2017
02:06
I have been taking the Wockhardt brand for just over 6 weeks now, they were the brand my local pharmacy supplied me with when I was started on Tamoxifen. I'm not sure whether the general tiredness I feel is due to the side effects or other factors. I have also had hot sweats but not continually, and at the moment general aches in my shoulders. Not sure whether this is due to the Denosumab injection I had last week though. I am being reviewed next week so I will mention all of the above to her and probably continue as the benefits outweigh the symptoms at the moment.
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21-02-2017
01:36
I've also finished the book, my first encounter into science fiction which I enjoyed. Like previous comments I thought about how things have changed, since the book was published with regards to childrens freedom. I can remember going off for the day on my bike, with just a couple of sandwices and a drink, with no thought about my safety and my parents did not consider this unusual. Matthew dissapearing for the day was therefore considered quite normal behaviour in the 60's, no mobile phones for the parents to constantly monitor his whereabouts and check his safety !!! Any ideas on what to read next. Ann xx
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17-01-2017
05:06
That's fine Barton I have ordered the book from Abebooks and won't be delivered until the 27 th Jan. so it will give me plenty of time to read it amongst the other books I have on the go. Ann xx
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