Thanks everyone for your support and advice. I see Oncologist next week so it gives me time to make a list and plan what my next step is ? I certainly feel strong at the moment. I am putting things to the side though as I feel that it am giving the signal to my illness to take over. I know that sounds a bit mad !
Just worry about family and how they will manage. Not all my family knows and my Parents went with me to the last appt. I think it made them realise how unwell I am. Told them that I take each day as it comes and there are going to be rough days. We keep trying to go out for the day but does not happen as I am unwell so it has to be last minute decisions.
Hugs and thoughts with everyone xxxc
Hi everyone just updating you . I saw Oncologist yesterday not the one I saw a couple of weeks ago. My platelets have gone up to 70 which they have not been for a while. Apparently they were 50 on last visit. The onc was quite happy to continue Cape for one week on and two weeks off. He said that I could take it for two weeks and week off. Also increase the strength which I was surprised. So I opted to continue Chemo tabs one week on and two weeks off. I said if platelets increase again then I would do what he suggested. He said that my HB had dropped so had blood transfusion . The Onc said the only thing he was concerned about my liver.
I have had one small vomit for a few days then a good day. I could not really go out because I was struggling with walking due to hip and had hurt my left shoulder. Got up today and feel quite well at the moment. We should be going away for a few days so hoping that I am able to .
I am glad that I did not agree to go off treatment. I know I am going to have rough weeks but I am going to continue to fight this.
Marla I am sorry you have had to join us. I find that everyone is supportive and that not everyone is the same on Cape. I just rest and have light snacks on days I cannot do much . The rest does help. When I feel down I go on this thread and there is a wealth of knowledge and suggestions which are very useful.
Have a good weekend everyone and hope the weather is ok .Love and cyber hugs to everyone xxc
Thanks for thinking of me. I have been one of those ‘lurkers’ you mentioned in a previous post, sorry. Also, feeling in limbo a little as I am having a Cape break. However, I am feeling well and back to my ‘normal’ activities, just feel I have to pack everything in before treatment plan changes again, as it will. Only concern is neutrophiles are still low-1.1 at last blood test. Onc monitoring. Hope they recover as have booked long weekend in Valencia, leave on Thursday -Tuesday?Having another blood test Weds so we will see.
Hope all well with you, Barton. Are you still giving up work? I don’t blame you if you are. Hope you have some nice things planned for the long weekend.
Thanks for update. Good news that things seem to be improving for you and platelets are recovering. Sounds like you are having more good days than bad which is great news. I hope you manage to get a few days away as a change of scenery is often such a morale booster, makes us feel like normal.
Have a good bank holiday
I won’t bore you by echoing what others have said, but did want to say Cape is manageable. I found side effects more irritating than debilitating. Regarding the big D, my favourite topic when I was on Cape, I had it when I was on the higher dose but when my Onc reduced dose, I was fine. Still carry Loperamide with me, just in case!!.
Hope SEs okay for you.
I remember feeling overcome with fatigue during my first week on Cape. In retrospect, I suspect this was due to delayed shock ( had just discovered I had liver mets ) and being back on chemo. As Nicki says, your body does adjust and I found that, as long as I paced myself, fatigue wasn’t really an issue as time went on.
Hope rock buns were tasty ?
Congratulations. Like me, you are now a lady of leisure. Work can be a wonderful distraction when you enjoy it but, if you don’t, it can just increase stress levels. I do miss it at times, being part of a team, the banter, challenge, etc but I have managed to fill my time with other things that are satisfying in a different way. I am sure you have found lots of things to keep you occupied. ?
Been a slightly odd weekend for me as I was under the ‘care’ of the surgeon who has been in the news; he was my consultant for almost 3 years and operated on me in 2008 when I was a private patient ?
Hope all well. Looks like we might have a sunny bank holiday
Gosh Marli, you did have a long wait for your treatment to start. No wonder you were stressed. We always feel better when there is a plan and we feel something is being done.
I like your friend’s idea for surgeon, but suspect he wouldn’t!
Everyone is welcome here even though it is a place none of us particularly want to be. Sorry to hear your husband is suffering, especially as it sounds like he is looking after his feet. The other ladies might have better ideas as all I can suggest is Flexitol and bed socks at night to help cream soak in. I too had sore feet which became red and quite sore. A dose reduction did ease things for me. Sorry I have not been more help.
Yes, he seemed very charming and had a huge female fan based which, ironically, seemed well deserved. As the bard once said ’ a man may smile and smile and be a villain’ (or something like that ?)
Glad you had a good day crafting. Hope you have something nice planned for today.
Hi everyone Hope you are all ok . I retired in 2012 and never looked back . Barton you will be able to relax when you can and not stress over work . I just felt overwhelmed with work and could not deal with with the people I was suppose to be helping .
We managed to go away but had to scale it back to two nights as I was feeling rough. We went to Wiltshire as we like the area and the motor racing at Castle Combe. I drove into Chippenham as I needed to buy School shoes for the youngest but I could not do it when I got there . Instead went to Castle Combe with the three kids. I just felt absolutely exhausted and felt sick . Luckily we were staying another night as I don’t think I would have got home.
Ext day we stopped off at Bourton on the water and used my wheelchair. I did not like the wheelchair as the kids and hubby were taking turns to push me. I thought they were going to tip me into the stream and when crossing the road I nearly fell out of the chair . Think it is something I will have to get use to as I can’t walk very far .
I had nausea and vomiting from Sundaybunti Thursday when I finish this cycle of Cape. I have also had two occasions where my tongue has been bleeding . We had no ice so I had an ice lolly which stopped the bleeding . I have an Onc appt on Thursday so will tell them .
Today I feel much better but need to pace myself . I do think the Cape is having some effect which is positive . I just need not to book things on a Cape week so I can rest . For 2-3 days I was in bed from tea-time which I think helped . Also when I am not eating fringe the ensure vitamin shakes which are not too bad . At the moment just craving for sweet things.
Sending love and Cyber hugs to all the Cape Crusaders xxx
Oh Helen …what good news for you …the cape must be right for you .
Just thinking back to this time last year …you were very poorly and look at you now …holibobs planned and your summer to look forward to.
Hugs xxx
Helen what lovely news . Well deserved holidays. When I hear news like this it gives me hope . Keep us posted about your holidays and experiences.
I feel ok at moment just a little queasy at times . I just have a rash on my scalp and neck which could be to do with either the Cape or low platelets. I had itch feet and arms during the night too. My hair is definitely thinner . Don’t know if anyone has had this too.
Oh and craving sweet drinks such as Cola / Pepsi. My hubby said I am like addicted to it. Just pleased that Strawberries are nice at the moment and is taking some of the sweet craving .I just miss my Bicardi . I never drank a lot of alcohol before I was diagnosed but not touching it due to my liver problems. My Hubby said one won’t hurt me but I don’t want to cause anymore damage.
Hope everyone is having a good weekend and the weather looks good. Hugs to everyone xxx
Thanks Barton . It is funny what foods you go off. I have gone off chips and cannot face big meals. I tend to live on soup and ensure milkshakes when I am really unwell. It frustrates my Hubby when he is trying to cook a meal for five us. Sometimes I cannot even be in the same room as my family when they are having a meal. If I have bread sometimes it is like eating cardboard . The joys of Chemo meds . I have lost some weight which I needed to but was hoping to do it differently .
I will speak to Onc on Thursday who may have some suggestions .
Thanks Racet xxx
Just finished my 6th cycle of cape and the only side effect I have had had been the complete lack of energy to do anything, I didn’t even bother to take my anti sickness tablets during the last cycle as the nurse told me I didn’t have to. I had my CT scan after the 4th cycle and results after the 5th, my Onc was happy with the results and told me to carry on with cape as the lymph nodes in my chest have shrunk, as there were no problems, my next appointment was with the oncoligy Nurse last Monday. Everything was fine on Monday and I picked up my next lot of cape. When I got home there was a message on the answer phone from the Onc’s secretary saying that he needed to see me before my next appointment. So it was back to the hospital today, 25 miles away, and a wait of 1.5 hrs to be told that the radiologist has reviewed my scan and decided that there is progression of the cancer in my ribs and pelvis, my Onc had previously written to my GP saying that he didn’t know why I was in pain with my ribs and the pain in my hip had been put down to arthritis, the pain in both areas has decreased since I have been on chemo. They are going to add vinorelbine to the cape along with bone juice but I am not starting it for 10 days as we are going away for a few days to celebrate my 60th birthday tomorrow, at least I have got an extra week off cape while we are away! I didn’t have much confidence in my Oncologist before, I have even less now, but at least someone else reviewed my scan and picked up on the deterioration.
i think cons Radiologists are the most expert at reading the scan…wonder if hed been away, or maybe behind in his checking of scans, my own onc said last week that the rads cons had picked up on Some progression when mine was reviewed on the morning before my appointment…
Yes, Sandra, That would have p d me off too…I obviously hadnt realised. Actually, my primary got missed, so now attend elsewhere and i currently get copies of drs letters, but im very happy with my onc…the oncs all have group discussions with the radiols /other specialists on the morning of my appointment…I guess thats what might happen everywhere… They are closely watching an area for me, which will be reveiwed with a bunch of scans in a few weeks.
Have noted some muddly bits in gp letters written by junior doctors in the oncs absence tho
Hello cape ladies
i was reading online that cape was originally a successfully strong iv chemo but was made into twice daily pills to.make it more easy to tolerate so you are all popping a very potent chemo and not “dolly mixtures” !!
Xxxxx
Hi everyone hope you are all are having a nice weekend.
Just to update everyone that I saw my Onc on Thursday. He was pleased with me. My liver has stabilised and platelets are 81. My Hb has dropped. So agreed to start Cape next Friday for a week and 2 weeks off . Mentioned about craving for sugary drinks. Did a glucose test and it was 16.4 . So he referred me to the GP . Feel really positive and so pleased that I think the Cape is doing something .
Rand GP Surgery and was advised to have more bloods done for glucose. The test can tell how my glucose levels have been during the last 6-8 weeks.
Had appt with GP and my bloods were 5.2 . He said that I am borderline diabetic however felt that it could be managed by diet . So no more sugar loaded drinks and sweets . I don’t know have good news from Onc then I create another problem .
But I do feel stronger. I had a couple of vomits and not had one for nearly a week. Hopefully on right track and keep fingers crossed. If it slows the progression and gives me more time I will be happy .