As you were all so very helpful to me reaching my next treatment option, I thought it was only fair for me to give you an update on how things are going ....
Firstly, my port op under local anaesthetic went very smoothly. It was sore and bruised for a few days but has now healed completely and I no longer have a dressing on it. It has been used for my 3 chemo IV treatments and two blood tests - so all appears good 👍
My 3 chemos are went well, a few delays here and there but to be expected.
I’m using the cold cap and I find it ok. It is like an icecream headache for the first 5 minutes or so but soon eases. So far I seem to have retained a full head of hair but already I’m losing hair on my arms and legs - so that saves shaving them 😂👍
I’m feeling fine with no noticeable side effects yet 👍
I’ve got my week off chemo next week but still need to visit the hospital for bloods and a covid test.
I hate being in the chemo suite most Fridays and it takes me around 45 mins to drive there and I’m usually at the hospital from 9 to 2ish.
One problem I’m having is I suffer from white coat syndrome and my bp goes through the roof.... and has been delaying the start of my treatment.... I do everything I can to calm myself but it’s just one of those things. I’m not on any bp medication and do all I can to lower it, daily exercise, increased potassium, low salt etc. The one thing I won’t give up is alcohol but I’ve cut down.
Any advice on lowering bp is very welcome.
In the meantime, I wish you all the very best and happy Sunday.
Jo xx
Ps most importantly I hope taxol is zapping my C, especially the liver mets ... My next scan not yet scheduled, will be an anxious wait .....
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Hi JoGood to read your up-date and that things seem to be going well for you. I can’t help with the white coat syndrome I’m sorry. I’ve always had low (but normal) blood pressure. Perhaps listening to some soothing music or podcasts on your phone (with headphones) would help distract you. When I use to have Zometa infusions I found it difficult going into the chemo suite seeing very unwell patients. My mind would start racing. I hope you are having a relaxing long weekend.
Glad you are doing well! So great to get your update! I have the same problem with BP when I go to the clinic— have you heard of tapping— EFT— sounds weird, but you tap on points saying affirmations out loud. Tapping has done a lot to ease my stress. IV you want more info let me know…. There are lots of scientific studies supporting the technique reducing stress
Thanks for the great update. It is nice to know how everyone is doing. It was good to know how you are managing the chemo treatments. I have opted not to go for chemo. I thought I couldn't handle all the side effects. Do you know how long you will be on chemo before you get a break? I guess it depends on how well the treatments are working.
Please keep us posted if you can, on how the treatments work out. All the best to you.
There are moments where meditation, pilates, yoga, swimming, music , simply do not help, especially not in our mbc setting. Doing biopsies, all sorts of scans and tests, waiting for results, doing chemo. Taking a low dose of anti-anxiety medication, say 1 mg of lorazapam/Ativan helps enormously. Talk to your doctor about dose and when to take it (given that you drive). for me even 0.5 mg works and does not make me at all dizzy, drowsy. Lowering your anxiety level will help with your pulse and bp. Talk to your doctors. Best
That is great to hear Jo . I am glad the cold cap is working for you .
It can be a long day for infusion . Are you getting any other treatment medications when you are there ?
I am on the week 1 Paclitaxel, Pertuzumab & Trastuzumab combo . I arrive at clinic at 8:30 for blood work and if everything goes smoothly I am out around 2:30 ish . Week 2 I get the Paclitaxel only and it is from 8:30 - 1. I find the Benadryl makes me pretty tired , I am glad I only have a 15 minute drive home .
I am hoping this Thursday will be my last Paclitaxel treatment 11 done so far oncologist suggested 12 . Scans tomorrow so my fingers and toes are crossed that this treatment has worked on my new liver Mets .
As suggested in a previous post by Slit , a MILD “chill pill “ I call it might help before appointments. That reminds me to dig mine out, scans are so damn stressful it could be a bumpy week . I take .5 mg of lorazepam PRN . I still have a clear head can drive and can actually think clear when anxiety takes over.
Hey Luann, I'm glad to hear you are managing your treatment without a lot of dreadful side effects. I am currently on Xeloda for liver mets. Ibrance/Aromasin and everolimus/letrozole have failed, so I'm assuming IV chemo next.
I had always thought once IV always IV, but I see you mention an end to the rounds you will take. I am curious; where do you go after your current treatment? Can you return to oral meds? Just trying to prepare my thoughts.
Thank you, and here's to long term effective treatment! Andi
Hi Andi I just talked with my oncologist about my CT scan results from Tuesday . I had really good results with the Paclitaxel,Trastumab ,Pertuzumab combo on my liver Mets . I will be taking a month off all treatment and then resume on Trastuzumab & Pertuzumab IV a every 3 weeks . I have been told it is very well tolerated.
At this point I have not discussed what come when this combo quits working .
Hoping for a long ride on this train if it is well tolerated and effective.
Hey Jo! So glad to hear that everything is going well with the chemo and associated things. I also suffer from White Coat Syndrome, and they automatically put me on BP meds during my first consult with my so-called medical team (upon diagnosis of cancer, where I still didn't know it was stage IV). Problem is, my BP was fine at home, so the BP meds were causing me to have BP readings (at home) that were so low that I was worried. Especially since I took my BP meds at night, and was afraid I might not wake up again if I took them before bed. So, long story short, I bought (prior to making this decision to STOP taking these pills) a home BP monitor and I started tracking my readings on an Excel sheet. I included my appointments on this, so I could see if there was any pattern going on. Took a long time (like 7 months) for me to get my primary care physician and others off my back about not taking the BP meds... and for them to HEAR ME that I do not, in fact, have high BP. Final straw for me was to read in an aftercare report that I was not compliant with my BP meds. I think I have this sorted out now, and I finally decided that I am not going to worry about my readings at appointments. Got tired of telling every new nurse that they will need to take my BP again after I settle down (at the infusion center for Zometa... although this has been the case since I was started, wrongly, on chemo). When the only nurse that bugs me (I think all of the others are WONDERFUL) "shushed" me when I tried to tell her about the BP thing, I gave up on saying anything more about it.
So, I have my Excel sheet to show them that I only have elevated BP at appointments. Given how prevalent White Coat Syndrome is... you would THINK all the nurses would respond that this is common rather than acting like they are perplexed by it. Anyway, most of the time I can go to my happy place and bring my systolic down by 20-30 points within a few tries... or with waiting to the end of my appointment to take my BP again. I am trying to view this as a mental game now. Clear my head, slow my breath... and stop thinking about how much I don't like this particular nurse! LOL
I need to keep an eye on my potassium levels too, as they are sometimes a hair below standard range. As for salt intake, I all but eliminated added salt to my diet when they first told me I had high BP. Turns out, again, they were wrong, as my labs showed I was too low on sodium. I have since resumed my regular (pre-cancer) intake, and I am fine on that. Oh, by the way... I won't give up my alcohol either. I am aware that it isn't the healthiest thing for me... but it keeps me off of anti-anxiety meds. So, there is that.
If you don't track your BP at home, I'd suggest you start doing that. That way, you will find out if you actually do have a problem with your blood pressure. That is a different issue than what happens when you go on these appointments, i.e., White Coat Syndrome. At least to and for me, I don't need to do anything differently other than trying to take the best care of myself that I can (diet, exercise, stress reduction).
In closing... I am SO glad to hear that you are tolerating the chemo well. I know you were reluctant to go this route. I'll be looking for your update about scan results! In the meantime... cheers! 😊
I regularly monitor my bp at home and it is fine. It’s so annoying .... I do my best to calm myself down. I will take a record of my bp readings to my next chemo appt & also have a word with my Oncologist.
I’ve been thinking about your white coat syndrome...I used to suffer from it as well . I also had huge problems speaking in public. UNTIl...I was put on a beta blocker for my blood pressure ( also suffered from high blood pressure with no known cause). I found public speaking became actually fun and my white coat syndrome disappeared. I no longer need the beta blocker but my symptoms have not returned. Talk to your doc about trying a beta blocker before your chemo sessions. My son took one of mine before his wedding and was cool as a cucumber...he doesn’t normally do well with being the center of attention. It’s a drug that can be taken occasionally so it might just be what you need. It doesn’t cause drowsiness or any kind of tranquillized behavior. You can take it before you drive in for your treatment.
I read your note the other day and my mind has been telling me I knew something that might work. I’m glad it finally popped into the front of my mind! Elaine
Hi ElaineI’ve booked a ‘phone call with my GP to discuss. Meanwhile, I’m taking daily bp readings at home and my bp is a little high but much lower than the chemo suite readings.
As suggested, I’ve liaised with my doctor and been prescribed a beta blocker just to take on chemo days. I took one Friday morning before I set off for my chemo and passed the bp check with flying colours.
Glad it’s going well for you with no side effects. Good luck with the cold cap- I didn’t bother with it last time and now regret it as my hair taking forever to start growing again.
Wishing you continuing success and admire your zest for life!
Glad things are going well for you. I was on taxol too. I also did cold caps. I've been doing them for 2 1/2 years and am so glad. I don't have hair anywhere else but my head though. Kinda nice not to shave legs though. Silver lining. I don't have high BP, but the opposite problem. Good thing you monitor it at home. I also take a 1/4 to a 1/2 of ativan if I'm feeling particularly anxious, but also all that breathing, meditation and other stuff that everyone has mentioned. I think we all have to have something to make us feel "normal" like your little alcoholic drinks. We can only do as much as we can and keep some things that bring us quality of life -- for you that's a drink or two. For me, it's a little dark chocolate and sometimes a glass of wine. Keep carrying on. Best, Lynn (one of many Lynns on here. )
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Best, Lynn (one of many Lynns on here. )
Taxol IV chemo date set.
Taxol or Navelbine? 
Update: Xeloda vs Taxol
