Feel like giving up.

Going through breast cancer treatment Chemotherapy
1

Had my last of 4 EC on the 27th December and now face starting Paclitaxol on the 16th January, 9 cycles over 18 weeks.

 

The EC caused me a few problems, one being an infection on the 3rd cycle, but I got through that and the 4th one has not been to bad.

I was grade 2 E+ H-, my oncoptic test came back as 36, so I’m high risk for the cancer to return, my lymph nodes were clear, but the cancer was deep and I’ve been told there is a possibility the cancer has spread through the vascular system.

 

I have read all I can about the Paclitaxol and the side effects and it is scaring the hell out of me, I’m 62 and have always been positive thinking, with a wonderful loving husband by my side for 45 years. I’ve always been active walking hills and do a lot of sewing and craft work and now I have to make a decision and I’m struggling.

 

The side affects will totally change my life, if I get them and I believe in a good quality of life, I can’t face the thought of not being able to sew, or do the long walks we do together, or being left in constant pain in my hands and feet and I know if I don’t continue the treatment, the cancer will return sooner rather than later. I’m going round in circles in my head. I’ve discussed this with my BCN and with my husband till my head is spinning, but I know I have to be the one who makes the decision, but it just doesn’t affect me, it affects both of us. 

 

I’ve spoken to so many people on forums who have had taxol, they have all had peripheral neuropathy from the taxol in some degree or other, but the majority have still got it after finishing treatment some years after, in some cases quite sever.

 

I would like just one person to say, I’ve not had this side affect, but so far, no one has. So now I feel like saying, no more chemo, just do the radiotherapy and I’ll take my chances.

 

I need to know, has anyone been in this same position?

Can anyone give me positive feedback regarding Paclitaxol?

 

I’m not asking for anyone to give advice on what I should or should’nt do, I just feel so alone, I’m just reaching out for a helping hand.

2

Hi just wanted to reply to you because you sound so low.  I have not started my chemo yet but a friend of mine has just finished all her treatment and suffered with numb fingers and toes.  She went to a holistic therapist who put a couple of drops of something on the tipes of her fingers and her feeling has all come back.  I will try to find out what it is.  I know I will have to have radiotherapy for certain, not sure about chemo yet and still awaiting more surgery but I am having those thoughts about whether I want to go down the chemo route.  I am really not sure either …

3

Hi pinklily,

I had the 4x fortnightly EC followed by 12 weekly taxol. I finished on 19/10. My hands are fine, bar the arthritis in one finger I already had. My feet du ring were red and a bit sore and on one the skin peeled but nothing to stop me going about my life as normal. Since finishing I have a lot of pain in the left one on the heel but that’s not necessarily to do with the taxol. It’s been mainly since I started letrozole. I’m waiting to see a podiatrist. I’m also diabetic and at my recent foot check everything was normal so probably not neuropathy and could be something completely different with coincidental timing… It hurts a lot 1st thing and on getting up after periods of inactivity but once I get going it’s fine.

As your proper regime is less doses, more spread out this may well ‘dilute’ any possible side effects which are by no means guaranteed. Apart from what I mentioned about and a little fatigue I has nothing else. Another lady who I saw doing hers at the same time as me had no side effects whatsoever.

Lastly remember, people (and I’m no exception ) like to complain so you’ll hear and read mainly from those affected. Those not will just go on with their lives and you won’t hear from or read about them. Believe me they’re out there in huge numbers . Is it really worth risking your life in case of something that probably won’t happen

4

Hi Pinklily

 

My oncotype came back at 31 - the start of high risk. I already have peripheral neuropathy in my feet from a previous illness - Guillain Barre Syndrome. Because of this I can’t have any of the taxanes and I’m having 6 x FEC. I actually feel upset because although I’m putting myself through the horrible scary process of chemo I can’t have the most effective chemo …which would be 3 x FEC followed by paclitaxol. So in a way I feel the opposite to you!

 

The unknown is scary. I’ve got my second FEC on Monday and I’m dreading it. When you read the side effects for the various chemo drugs they can seem horrendous and its horrible going into it not knowing what you’ll get. What I will say is that you have to remember you tend to only read about negative experiences as thats when people often post -  when they are looking for support.  Also, from what I’ve read many people who get neuropathy from chemo do recover. And I’ve lived with neuropathy for 13 years. Its like a buzzy, slightly numb feeling in my feet… I notice it more when I think about it…like now! I’d prefer not to have it but it really doesn’t impact on my quality of life or stop me doing anything at all. I love walking and I’m very fit and active. 

 

Hope this helps  xxx

5

I had to have all Docetaxel which is similar to what they are giving you because I take statins and blood pressure tablets AND I had to have Herceptin as well. I had to stop after 4 rounds rather than 6 because my blood counts went too low. 

 

I was asked to keep a diary about PN because I was having all “tax” . I did have the early signs of neuropathy (electrical feelings in hands and feet) and I my writing was not as small as usual. Please be aware that I was being asked to watch for the signs otherwise I would never have said they were a problem. Another thing they asked me to check was if I could push tablets through a foil cover, you know how some pills are on a piece of paper covered in foil. 

 

Nobody can tell you what to do but I think you should throw everything you can at it. 

6

I feel like I am in the same situation as you. I had three rounds of epirubicin and the third round I had terrible neuropathy.  I could not push my pills through the blister pack, I could not open my front door with my keys, and I could not even press the lock button on my key fob for my car. Additionally I had huge sheets of skin come off of my hands. I was very clumsy and tripped and fell resulting in a terrible road rash. This concerned the doctor because he said that that is not a typical reaction to epirubicin.  I believe it happened because I already have a peripheral nerve disease called CMT albeit it at 54 years old it is fairly mild. My doctor knows that I have CMT.  My next three rounds are paclitaxel.  Like you, I am very worried about the long-term effects and quality of life. I spoke with another doctor at the hospital and he said that there is no alternative to paclitaxel except skipping it and that doing so would greatly decrease my chances of survival. He suggested that it was better to live with permanent neuropathy than death but  I wish I had more information. For example, would it decrease my chances of survival by 5%? If that were the case I would be willing to forgo it to ensure that I did not have to deal with long-term neuropathy. When I asked him about reducing the dosage, he said that doesn’t work. It doesn’t improve the side effects and it decreases the efficacy of the drug. They have given me a prescription for omega threes called “Onlife” from Switzerland. Additionally they iced my hands and feet during the first round of paclitaxel. The nurses didn’t seem very on top of icing my hands and feet. The gel packs got warm before they change them out so I am bringing my own for the second round. I am on day two after the first round of Paclitaxel.  I will keep you posted and let you know what my reactions are regarding neuropathy. 

7

I feel like I am in the same position as you. I just finished my third round of Epirubicin and had  a terrible neuropathy reaction to it. I could not push my pills through my blister pack, open my front door or even lock my car using my key fob. The doctor was concerned because this is not a typical reaction to epi. I believe it is because I already have a peripheral nerve disease called CMT, I’ll be at at 54 it is fairly mild.  I  did take my first round of paclitaxel even though I expressed great reservations to my doctors. I asked them for an alternative to paclitaxel and they said there was none and that if I skipped it it would greatly reduce my chances of survival. When Dr suggested that it was better to live with long-term neuropathy than death. I wish I had more information about my chances of survival. For example if I cut my chances of survival by 5% perhaps it would be worth it to me to not have to deal with long-term neuropathy.   Additionally I asked him about reducing the dosage and he replied that reducing the dosage does not change the side effects and greatly affects the efficacy of the chemo drug. They did write me a script for omega threes called “on life“ from Switzerland. Additionally they cooled my hands and feet during treatment although the nurses were not really on top of it and the gel packs did get warm. Therefore I am bringing my own gel packs to the next session. I’ll keep you posted on how it goes. 

8

Hi Ladies, best wishes to you all, I’ve just signed my paper work to for chemo but still having to wait now for a heart scan, sitting reading the paper work and lists of side effects as you all would have read, Like you Daisydi I thought twice about having it but it’s such a scary thought isn’t it?? They said there’s a Predict test to see if it’s necessary but not sure if I fully understand it, my oncologist said it isn’t an option but couldn’t supply me with an figures any advice about chemo I’m signed up for FEC-T X3 X3 then Trastuzumab (Herceptin R) big hugs xx

9

   Hi there from New Zealand. I’m on this site because I’m looking for solutions to chemo-related nausea and indigestion, but I saw your post and would like to give you some encouragement. I’m also undergoing treatment with Paclitaxel, just at the beginning of a 12 week cycle. So far I have not experienced neuropathy.     The problem with reading a lot of information is that it can become horribly depressing. It’s good to be informed, but sometimes much of the information is biased towards what might happen and not what will happen. Everyone’s case is different, and what happens to others may not happen to you. I’ve found I have to limit my investigations and try a little more “head in the sand” attitude! Medical specialists have a duty to inform you of all that MAY happen, so sometimes they go over the top with every single possibility. 

    With regard to your quality of life, yes, things will change, but you will always be able to do something. You may not be able to sew as finely as you do now, but you could paint big, splashy watercolours instead. Your long walks may become shorter ones, but Nature is still there to be enjoyed even if you just sit and breathe the fresh air. You have a loving husband and family, and believe me, this is pure gold.

     Please don’t feel alone, many of us are also going through this **bleep**ty thing together. As we say in NZ, aroha nui (much love) and kia kaha (stand tall).

10

Hi Pinklily 

I finished chemo in December 18 , I had 4 cycles of EC and 12 paclitaxal. 

I experienced pins and needles, and would occasionally drop items. 

This was happening whilst on Paclitaxal, once chemo had finished, the side effects started to reduce, I have been having acupuncture from the start of treatments in May 18. I feel it made a difference. 

The side effects will reduce over time, with Cancer you need to throw everything at it, 

Good luck with your treatments.