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Sandra59
Member
since
04-12-2016
68
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4
Hugs
19-10-2017
01:59
Kate, if you have problems with finding a Dr to complete the DS1500 like I did, contact Macmillan. If you have to take the long route to getting PIP they will help you complete the form or direct you to a welfare worker who can help you, remember to put in as much evidence as possible, I included copies of all my letters from my Oncologist to GP, they can't dispute hard facts. You can also include statements from people who know you saying how your diagnosis has effected you, keep a diary of how you cope each day and include that, remember also to include things like using special equipment, I have electric tin opener and bottle opener, shower seat, sock donner, long handled brush etc. Good luck x
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19-09-2017
09:41
Well after 6 months of waiting I have eventually been given PIP, the full amount. After my ONC refused to do the DS1500 because he thought I would live more than 6 months ( he was right, I am still here) and my GP insisted that the DS1500 was only for people with weeks to live, I wrote to DWP advising of a change in circumstances and sent copies of letters giving my diagnosis from my Oncologist to my GP, I was already in receipt of the basic living amount due to pain in my hip that I had been told was arthritis but turned out to be bone mets. I heard nothing from DWP and assumed they must have conveniently lost my letter. Having spoken to the welfare officer at the Hospice she suggested that we started my claim again from the beginning, I contacted DWP only to find that they did have my letter and were looking into it. The lady I spoke to said she had never seen anything like it before as there was no record of them contacting me only of them sending my paperwork back to Capita, she told me that it was all just waiting for a decision. I rang them again on Monday after waiting for another 6 weeks and found out that I had been awarded the full amount of PIP and the money went in the bank today, I am still waiting for the letter that was supposedly sent out last Wednesday. So now I have the money to go off and do things just a pity I don't have any energy or strength! Hugs Sandra x
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28-08-2017
01:47
Hi, I started on cape in January after being diagnosed with SBC in the lymph nodes in my neck and chest and the pelvic bone. I had 5 cycles and when I had the scan results it showed progression in my ribs, I had had pain in my ribs from before diagnosis but Onc had said he didn't know why, so I'm unsure if it really was progression of just not picked up. My Onc then added vinorelbine to the cape and I had 2 cycles of that but as the side effects were quite bad he stopped it. I then had a 7 week break as I had to have a tooth out and the new regime had to be sorted out before starting weekly Paclitaxol. During the break the pain in my ribs and pelvis increased and the swollen lymph nodes in my neck increased in size and number. I have just finished my first cycle of Paclitaxol and ended up in hospital for 3 days after they got my blood results back before the final dose. My magnesium levels were dangerously low, I had been complaining about cramps, muscle pain and my heart was racing, also my blood pressure has been very up and down. They took me of the omeprazol that I had been on since chemo for my primary 13 years ago, it turns out that it can stop you absorbing magnesium and other minerals from your food. After 2 infusions of magnesium my levels were high enough to allow me to have the last weekly Paclitaxol dose a day late. I am due to see my Onc on Wednesday and am hoping that he is still happy for me to continue with Paclitaxol as I don't want another enforced break so soon after starting. I am also booked in for a CT scan on Thursday Although the hospital said I could resume taking omeprazol again I am looking to stop it if I can after reading up about it. Sending hugs to you all Sandra x
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17-08-2017
10:57
I'm so sorry About your news Angela, sending you lots of cyber hugs and prayers. Do you have a Hospice near you? I visited our local day centre last week, we had a long talk with the Nurse there about our fears for the future, especially about how my husband will cope at the end as I know that it worries him. They were able to tell him about all the support available including Macmillan, Mari Curie, and the District Nurse. Our Hospice tends to concentrate on supporting people in their own homes rather than taking people into the Hospice and they have a team to do that. For me talking about things helps me to feel prepared and in controll, even if the end may not be for some time yet. If you need to talk do! And if you want to pm me please do Sandra 💝 xxx
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17-08-2017
09:04
I'm so sorry About your news Angela, sending you lots of cyber hugs and prayers. Do you have a Hospice near you? I visited our local day centre last week, we had a long talk with the Nurse there about our fears for the future, especially about how my husband will cope at the end as I know that it worries him. They were able to tell him about all the support available including Macmillan, Mari Curie, and the District Nurse. Our Hospice tends to concentrate on supporting people in their own homes rather than taking people into the Hospice and they have a team to do that. For me talking about things helps me to feel prepared and in controll, even if the end may not be for some time yet. If you need to talk do! And if you want to pm me please do Sandra 💝 xxx
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13-07-2017
08:07
Hi Dragoncarine, I agree, I think the current system of checks is inadequate. Regular blood tests looking for raised TMs would also be a good indicator that further investigation is needed. My original dx was In 2004 stage 3 hormone + her2- I had a mastectomy with lymph nodes clearance followed by chemo rads 5 years tamoxifen and 5 leterazol. After 10 years I was discharged, and told that NICE guidance now only recommended hormone treatment for 10 years and the chances of reassurance after 10 years was minimal, after all the 10 year survival rate is what they measure their success in treating cancer by. Within 6 months of stopping hormone tablets I started having pain in my hip, I had an MRI and was told I would probably need a hip replacement even though the pain I had was in the wrong place for the hip joint, and they didn't know why there was so much muscle loss in my hip. The pain continued to increase and 8 months later all my lymph nodes were enlarged and I was sent for scans and a biopsy and told the cancer was back. The CT and bone scan confirmed mets in my pelvis, ribs and lymph nodes. I do think that if they had left me on hormone treatment, which was obviously working, and had I had regular scans and blood tests I could have remained symptom free from cancer for a lot longer. Sandra
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11-07-2017
08:51
Hi Dragoncarine, I'm waiting to start on Denosumab but have got to have a broken crown removed first, I have an appointment with max fax on the 28th. I then have to wait for 6 weeks before I can have my injection. I'm quite worried about my teeth as they all went on to self destruct when I had chemo with my primary BC in 2004. If you have seen your dentist for a check up and they were happy I expect everything is fine but if you are worried speak to your oncologist. I am waiting to start paclitaxel at the moment which has been delayed because of my tooth, I have had 5 cycles of Cape and 2 of Cape + Vin but my Onc decided to change things as my bone mets in my ribs were still progressing and the mets in my lymph nodes had remained the same. I hope your teeth calm down and stop hurting soon, sending hugs Sandra x
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10-07-2017
11:41
Happy birthday Barton, welcome to the 60 club! I hope you have a lovely day and get lots of treats. 🎊🎂🎁💞
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05-07-2017
07:36
Hi Lollymum, I'm glad they have found out the reason for you being so bloated and hopefully once they drain the fluid you will feel a lot better. It's great that you have been able to go swimming, it's good exercise. I was going swimming regularly before I was diagnosed with secondary BC but haven't been since, the friend I was going with seems to have abandoned me since diagnosis! I did find swimming extremely useful for moving the lymphatic fluid that builds up in my arm and chest, I found that I was having to get out and go to the toilet frequently as the fluid cleared! I am due to see my Oncologist on Saturday, he appears to be running an extra clinic, hopefully he will have a plan and I won't be left without treatment for too long. Sending hugs x Sandra
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01-07-2017
09:33
Hi everyone, hope you are all keeping well, I hope your daughters prom went well last night Lollymum. I saw my GP yesterday and she sent me to A&E in case I had blood clots, I didn't want to go but reluctantly agreed. They were unable to get blood out of my poor veins so I ended up having to have a femeral stab to get blood, it still feels sore. The d diamond blood test came back positive so I had to have a chest CT which eventually came back negative. After 7 hours I managed to escape, so it will be back to the GP get again next week! Enjoy your weekend everyone, sending hugs Sandra
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30-06-2017
01:48
Hi everyone, I hope everyone is coping well with treatment. Angela 60, I am pleased your Onc has offered you a reduction in vin, hopefully it will reduce your side effects. Angelah61, I hope your bloods are soon ok so that you can continue cape. I saw the Macmillan Nurse on Wednesday and had a long chat with her about my side effects from vin and cape which have got a lot worse since the introduction of vin. She said she would speak to my Onc about a dose reduction. She has just rung me to say that my Onc had decided to change my chemo completely, I have no idea yet of what to, so not to start taking my next lot of chemo on Monday. I now have to wait for an appointment to see him! I'm a bit worried as I was referred to max fax for a dental assessment before sarting bone strengthening treatment, they want to remove a broken crown but my appointment isn't until 28/7. I am worried that my Onc will not want to start any new treatment until after that. When I saw the Macmillan Nurse I mentioned that I had I had been twice to the GP in the last few weeks as I had felt unwell and my heart seemed to be racing at times. The first time my temperature was up and I was told to let the hospital know, which I did. The second time the locum I saw didn't seem to know how any of the equipment worked and told me that my heart rate and BP were fine. When the Macmillan Nurse checked them they were both very high and she told me to go back to my GP, so I have an appointment this afternoon. I now have my own BP monitor so that I can check it myself, my BP was up to 220 over 126 after the phone call about my chemo so if the cancer doesn't kill me my BP will! Sorry I have rambled on a bit, I am getting a bit stressed, I hope everyone has a nice relaxing weekend. Hugs x Sandra
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25-06-2017
04:13
Hi Angela, I am feeling exactly the same as you on the combination of vin and cape, the first cycle wasn't too bad apart from tiredness and the big D, but this second cycle has been awful. Cape was so easy compared to this, I am just coming to the end of my 2 weeks of treatment and all I want to do is sleep, by the time I have got myself up in the morning I am worn out, my temperature has been up and down but only up to 37.9 so I haven't rung the hospital. I have been drinking lots of water but have no appetite, when I do eat I find that after a couple of mouths full I have had enough and feel bloated. My husband got me a carton of chocolate milk yesterday and I found that was ok to sip at. Like you I find that I am getting lots of indigestion and indigestion tablets don't seem to help much I have been on omeprezol for years as I suffer from acid reflux. I am not due to see the oncologist this cycle only the nurse but I often find that she is better than the onc and has more time to talk. Let's hope that we both get some advice on how to cope with these symptoms when we have our appointments this week. Sending lots of hugs Sandra
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23-06-2017
07:36
Hi Angela, I have been on 100% cape since January with few side effects apart from tiredness, after 5 cycles of Cape my scan showed slight reduction of the metastatic lymphadenopathy in my neck and mediastinum, but progression in my 5th and 6th ribs, the lesions In my pelvis were stable. My Onc was unsure whether to change my treatment completely to taxtorere which I had during my primary treatment in 2004 on a drug trial, it wasn't routinely available as a primary treatment in England then, or to combine vinorelbine with the cape. As my veins are shot and I would need a line putting in and then have to have blood thinning injections each day, because the line I had before caused blood clots, my Onc decided to try the vinorelbine. I am just coming to the end of my 2nd cycle and have found the new regime tougher than cape it's own, the tiredness has increased and I was hit with the big D about 7 hours after taking vin, I have also had a bit of a temperature, luckily it has only reached 37.9 so I have avoided hospital and having to stop treatment. I hope everything goes well with you and the right decisions on treatment are made. Sending hugs Sandra x
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10-06-2017
11:38
So sorry to hear your news racer, sending hugs and prayers to you. I hope you are well enough to enjoy the precious time you have with your family. Love and prayers Sandra
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08-06-2017
04:51
Hi Angela To join in on any of the existing threads open up the thread and select the pink button on the top left that says reply to thread, that will then put your comments into that thread rather than into a new thread. I try to look around me each day and find things to be thankful for, like being able to enjoy going out for lunch with family of friends of watching the birds on the bird table outside my window, although life is tough there is still so much I am thankful for. I have a strong faith in God which gives me peace about my future, whatever the outcome. I do still have days when I struggle and I get very frustrated with the NHS and the deterioration in the service since I had my primary cancer in 2004 and the way patients with secondary BC are treated, but when I start getting negative I try to think of something positive instead. Hugs Sandra x
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08-06-2017
02:09
Hi Angela I am on the same regime as you, 6 cycles of Cape so far, the last one I also had vinorelbine. I found that I felt very tired for a couple of days after taking the vinorelbine and was hit with the big D about 8 hours after taking the capsules but apart from that I was fine. I don't think vinorelbine is supposed to cause hair loss but it may cause thinning. I normally have my hair coloured but have decided to stop for now. Why don't you join in on the main cape thread, just use the reply button and post your question or comment there, when you post as a new topic people can very easily miss it. Posting on the main cape thread makes it easier for members to look back and read what problems other members have had when taking cape and how they have coped. Treatment is really tough, I know I often resent the amount of time I have to sit around waiting at the hospital for different things and fell sorry for my husband having to spend so much time there with me but I try to be thankful for what I do have and enjoy the small things that I can still do. Sending lots of hugs and hope everything goes well with the new drug. Sandra x
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03-06-2017
10:58
Thanks Barton, I now have a MacMillan Nurse and I will had a word with her about getting a card and any tips, she has provided me with lots of other things. Moijan, I like chocolate but only have a occasional square as I am overweight so that wasn't the reason. I think it was because I had started vinorelbine on day 1and 8 of the cape cycle and that was day 8, although the big 'D' wasn't one of the side effects of vinorelbine I think that combined with cape it was. Hugs Sandra x
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03-06-2017
06:18
2 Hugs
Hi Barton Yes, I had taken 2 Loperomide before going to bed as I had already had one lot of D, but it didn't work!! It makes you worry about doing anything or going anywhere in case you get caught short. Hugs Sandra x
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03-06-2017
04:15
I had a big 'D' moment the other night and ended up having to change all the bedding at 2am, my poor husband didn't think much to being woken up that way. Luckily we have twin mattresses on one base so I only had to change my side. The mattress has now got a cover on it to protect it and I will have to invest in some incontinence pants!!!
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31-05-2017
09:54
Hi Marli, Sorry you are struggling with cape, speaks to your Onc about the side effects, I am on 500mg of Cape, twice a day, and have had no real problems. I am now on my 6th cycle and have just been put on Vinorelbine as well which has had a few more side effect including the big D. I did find on the first few cycles of Cape that I had chronic wind, all noise but little smell, but still quite embarrassing! That seems to have calmed down now. I do use lots of cream on my hands and feet but apart from them being a bit red and my index finger being sore and itchy I have had no real problems. I stopped taking my anti sickness tablets most days with Cape as I found they made me even more tired and I only ever felt slightly sick. I hope things improve for you as your body adjusts, but do talk to your Inc who may be able to hangs or reduce your medication. Hugs Sandra x
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