To have the op or try alternative

Hi All

Happy New Year to everyone.

Update: Well I have finished my radiotherapy. 5 x weekly sessions finished 31 Dec 2018. Didn’t go off without a hitch. Found that the bolus caused too much pressure on the rib below the breast on 2 occasions so had to have a break between the re-positionings of the bolus. The last one I was determined to get through it in one go as the previous session saw me waiting about 1 hour to get back in for the other zap! Got an infection of streptococcus dysgalactiae in one of the lesions so was on anti-biotic penicillin for a week. Last session we did another swab and I should receive the results of that on 11 Jan when I go back to the tissue viability nurse in Radiology. Had a total of 30 Gy. Pain continues in the breast but is being controlled somewhat by oral morphine medication now – 4 x 1ml every 4 hours. Can take more if needed. Being referred for pain management to a hospice who manage these things so well. Awaiting BC Nurse to do the research and get back to me. Still having to change daily Allevyn plasters over the breast as sometimes when taking them off it tended to bleed and they don’t want this to keep happening. So using a collogen plaster layer underneath the main plaster. This tends not to make the lesion bleed but has done on one occasion. When you look at the lesions they look like you have an infection of pus but don’t ‘leak’ like pus. Viability nurse thought mine could be a combination of the infection and the tumours themselves as these ones, from the dedicated Breast MRI scan, were very close to the surface and had very probably broken through.

Oncology appointment was on 2 Jan 2019. Going to start the Paclitaxel on 10 Jan. This time 2 courses, 3 weekly infusions with 1 week of rest in between. Had to sign another waiver. After the 2 courses they want to do a CT scan to see how it is doing. They don’t know why the EC didn’t work as effectively as they had hoped. I’m just another guinea-pig! During that time hoping to see some, or all, eradication of the cancer.

Had a CT scan on 30 Dec. This showed that because of the break from chemo the main lesion on the liver had grown a couple of millemetres. There was also the other they found previously but I also have another lesion on the liver with the potential of another one which, so far, is tiny so 2 new ones on the liver. Talked with the lady from my hair loss group who said that the Paclitaxel had sorted out her surface lesions so I am very hopeful of this treatment for ALL of cancers. The EC chemo, they think, kept these lesions in check. We can now say that I have secondaries. Hadn’t prepared questions for Oncologist so unsure if I have any more secondaries in the thorax abdomen and pelvis. May need another bone scan to check my bones but I can’t feel any aches or pain arising in any of them except on the rib below the right breast. Oncologist aware of this. I also forgot to ask about the blood clot on the lung and wonder how this is doing. Still taking the innohep for this.

Dark hair is growing back from the break of chemo. Feels a bit like bum-fluff at the moment but unsure if the Paclitaxel will take it away again! They SAID some hair loss but we shall see. Still have some of my existing longer hairs on the head – tough little beggars. Kept eyebrows and eyelashes.

General health has been relatively good. Did have an incident of pure liquid diarrhoea which was yellow/orange in colour. Was only the one occasion and everything has been fine after that. This, from google, was bile which is not good but as it was on the one occasion only it could have been down to something I ate. Seem to be constantly pre-occupied with ‘the bowels’ from the constipation I suffered with the EC!

So, I am still going. I do feel that there is an ethos of being ‘managed’ and not actively trying to secure a good outcome. Maybe the Oncotype DX test could have secured that in terms of choice of chemo but as you know it is not done as a standard. As I was going along with the EC I didn’t have consistency of oncologists and it was only when I had the same oncologist after the 3^rd session of EC that note was taken of the burgeoning lesions on the surface of my boob and what I had been telling them. I had said that I thought that the EC should have been given more regularly as I had felt that the bulge of the lesions took more of a hold 1 week after the EC chemo infusion. They just didn’t listen! In fact they hadn’t even allocated me to the one oncologist I prefer to see at my consult on 2 January. You really do have to stay on the ball to ensure you get consistency. AND I didn’t see any consultant throughout my radiotherapy!

So enough of the whinge. Will try to come back on my thread after the 1^st Paclitaxel and what tell you what ‘delights’ that brings to me! My love and hugs to you all.

Gosh You have been having a rough time of it. Hopefully your skin will settle a bit now the RT is finished. I know you think you're being "managed" but EC (or AC) plus paclitaxel are pretty standard and quite effective treatments for BC. Personally I found the paclitaxel much much easier than the AC I had, although for some people it's the other way round. Are you having weekly paclitaxel? I did and managed 9/12 before my onco stopped them because I had peripheral neuropathy. 

I can understand that you hate having different oncologists see you. I went private so had the same chap from the outset, and I still see him for checkups. I don't think I'd like to see different people all the time - I'd feel the need to explain each time - how tiresome.

Anyway, keep plugging on with it, stay strong and maintain the vigilance.

Big hugs

Lynn

Big hugs , keep posting, and keep fighting that nasty little critter ! Xx

Hi All

Update – You could say I am okay but then I am suffering from radiation burns/peeling. As you are aware I had lesions at the surface of my breast and contracted a strep infection – had to have another week of the penicillin. I was told not to put any creams on the breast. Wish I hadn’t listened. But then what do I know. Well, with regard to radiation burns, absolutely nothing. Last radiation was done on 31 December 2018 and there was a pinkness there. This has now gone to bright red and peeling of the skin with associated, sometimes, pain, always discomfort, and of course the requisite incredible itching. Was using the R1 gel and R2 cream but this was not enough. I had what you might call chapped skin which ‘broke’ when I moved myself or even my arm. The ‘chapped’ areas were on the chest and just under the armpit in that general area. On Friday I started lashing on the E45 cream and, oh boy, did that start to work. Over the weekend I have ‘peeled’ off so much skin – only that which lends itself to being lifted although there have been 2 times when I wasn’t taking enough care and peeled skin off which wasn’t quite ready – OUCH! I get itching after putting on the cream but this is the loose flaked skin which has ‘blobbed together’ causing irritation, this is what I remove. Am now lashing on the E45 at least 4 times a day.

Tomorrow I have a Community Palliative Care Nurse coming in the afternoon to discuss all of this. They also like to work in conjunction with District Nurses. I had complained about the pain I was receiving from the lesions on the surface of my breast. At this moment in time I don’t seem to have any of these though get a couple of ‘gripes’ occasionally. I can’t yet distinguish whether these are from the peeling skin or the tumours themselves. They are so similar. Feels like something sharp running across/in the skin and is so acute it stops me in my tracks. Been discharged from tissue viability with Radiology though I think this was far too early – passing the buck to the lady above. Still we had a good chat when making the appointment to see me so things might be better going down this route.

Had 2 of the Paclitaxel treatments so far. 3^rd is on Thursday. Have a 1 week rest from the Pac the next week but have Oncologist appointment instead. Have been too pre-occupied with the radiation burns to notice anything from the Pac. Certainly I have no peripheral neuropathy, have some fatigue but then the radiation burns/flaking is really getting me down. Still on the low dose morphine. Both times at Paclitaxel treatment my blood pressure has been way down on normal, potentially stopping the treatment but have still gone ahead with it. Seems it could be the Ramipril (blood pressure tablets) so now have to take BP before taking them. Without them my BP is in the normal range so not taking these pills but need to do a med review with GP. We’ll see how we do after BP taken on Thursday morning!!!!!! Still on the innohep for the blood clot on lung which might just be enough to also control BP. Med review with GP may clarify this.

So I am still here. Still go onto the Macmillan site and read the discussions though don’t respond as much as I did. Too pre-occupied with myself!!!!!!! Love and virtual hugs to all on this horrendous journey – well for me it is!

Hello Chloecat

I have been following your threads on the group  and want you to know how very sorry I am for  terrible  time you have been having...and now the severe  radiation effects  on top of all the other treatment you are having.  This has been a long and difficult road for you and it is unimaginable how you must be feeling.

You have my thoughts and love at this time of such intense  adversity for you.

Heather  xx

Hi All

Update: SO, HOW MANY OF YOU HAVE HEARD OF “RADIATION RECALL”? You can find info on the web. Basically this is when you have had radiotherapy and have been put back onto chemo very quickly after it.

I have had ‘one hell of a time’ because of this as it manifests as radiation burns! My last session of radiotherapy was 31 December 2018. I was a little pink on the boob and still dealing with the strep infection on the surface lesions. Correction here – advised you of using collogen plaster over lesions, it’s not collogen but silicone wound contact layer/plaster (safetax technology – which means it is easy to take off). Therefore I was told I could not put any cream WHATSOEVER on any of the boob and complied. I was put onto the Paclitaxel on 10 January 2019.

Having not been told about it the resultant burgeoning deep redness and peeling of the skin I took it to be a normal side effect of the radiotherapy. Certainly I haven’t read anything on here about it nor in any of the literature received or of any ladies who have reported as suffering from it. AND was neither told by the Consultant Radiologist/Oncologist nor even the Oncologist about it to possibly look for it who had quickly put me onto the next chemo regimen (Paclitaxel) because of the lesions in my liver! In fact when I found out, I searched the web who say this happens in 9% of cases which, to me, is quite large. It is a very poorly understood ‘syndrome’. Clearly here, there is a reason WHY the medics HAVE to give time between finishing one treatment before starting another. This is very likely the reason why we have to wait at least 1 week between each Paclitaxel treatment so that the body can recover from the onslaught. AND a week’s rest after your 3^rd dose of Paclitaxel in order that Red and White Blood counts, Platelets and Neutrofils can recover. Certainly these are the only ‘counts’ that are recorded in my chemo book. Over the 5 weeks of radiotherapy all of these ‘counts’ recovered brilliantly and in most cases increased but are now falling off again with the constant 3 ‘weekly’ doses of Paclitaxel.

My boob is now recovering from the radiation ‘burns’ but only at my ignoring what the medics say I should do on this point. I asked why I could not put cream on the other areas of the boob not known to have the strep infection. They advised that I could but it would be at my own risk as the cream could cause a bigger infection which they wanted to avoid at all costs. That was told to me when they ‘believed’ that I was suffering from Radiation Recall at the Oncologist consult on 30 January 2019 (my radiation ‘burn’ had begun to manifest on 15 January 2019 – by 21 January it was at its worst). I lashed on the E45 cream after that bit of info and the relief from itching and pain was too immense to explain in words. My boob always seems to feel ‘warm’ to touch and I have niggling bits of itchiness still but at least most of the redness has gone. When I looked at the boob yesterday I thought that this next round of Paclitaxel just ‘might’ be the Radiation Recall coming back. I’m keeping an eye on it and taking regular photos so I have a record. In fact my mobile is full of my boobie!!!!! (Ironically, the strep infection might have ‘eaten’ some of the tumours below the boob and the big lesion I had at the 3oclock position. But the medics say that it is most likely the Pac. What about the use of virotherapy as a treatment! Still so much that they really do not know about.) I still have one lesion below the boob which didn’t have the strep infection but neither the radiation or Pac ‘seem’ to have had any effect on it either! This one can cause pain when trapped between my ‘down south’ boobie and tum! Still taking the morphine which helps with this.

I am due to have a CT scan after finishing this 2^nd ‘cycle’ of 3 Paclitaxel to check on the liver lesions but have yet to wait for the appointment. Request was made in my notes at my consult on 30 January 2019 to be done but I am still awaiting this. Must give them a ring as it is now at least 12 days since. These people haven’t followed through the request. Next Oncology consult is 6 March and this CT scan ‘should’ be performed before then!!!!!!

Saw the Community Palliative Care Nurse on 22 January 2019. Not debilitated far enough for any of these services YET but she went off with a list of things she would research and possibly put in place for me to see so that, at least, I would have the general info for the future. She arranged for District Nurse to see me about my boob ‘wounds’ who finally came on 4 February. Next visit just to check on wounds will be w/c 18 February, no firm date set.

Side effects from Paclitaxel: none that I can readily identify except for fatigue. Am finding I don’t have the ‘sparkle’ I used to have. Oncologist was very happy I didn’t have peripheral neuropathy! What about the Radiation Recall! Sheesh!@! Oncologist also ‘felt’ that the breast had got softer! Yeah, right!

Noticing an ache at the top of my right lung. Could be radiation damage. Will ensure that when I get the CT scan that the radiographer checks on this.

So, my opinion of the standard treatment – ABSOLUTE PANTS. There has gotta be a better way than this. Story – end of. Will bring back an update when I have more. Love to all on this ‘PANTS’ journey.

A very interesting post - you don't do things by halves! I had never heard of radiation recall. I had a quick look and will read some more but I agree, it's yet another significant side effect that no one warns you about. I saw one article about a woman in Japan who got it 6 years and 4 months after her radiotherapy - sigh!

I'm very glad to hear you're coping ok with paclitaxel. I certainly didn't find it as harsh as doxorubicin but I was still fatigued. I'm particularly glad for you that you haven't (yet) got any PN symptoms. With any luck you'll avoid that altogether. 

Stay strong xxxxx

Hi All

So what can I tell you.

Chemo – had the 3^rd dose of 2^nd cycle of Paclitaxel 21 February 2019. This week is rest week. What I don’t know is actually how many cycles of Paclitaxel they are intending to give me which is frustrating. A question for my Oncologist 6 March.

Fatigue – overwhelming, haven’t had the spark to do or even entertain doing anything! Think there is a cumulative fatiguing effect of the Pac. No wonder you have to have a ‘rest’ week. No other health conditions that could account for it. Today, 26^th, was the first day I felt I could actually DO something.

Boob – radiation recall now resolving/resolved though I do still have areas around the boob which are darker than the actual boob! I have no open lesions but do have a lump just above the crease at the 5o’clock position where neither the radiotherapy nor the chemo is having any effect! So what is it? The other 2 that could be felt easily, in my estimation, have been partially ‘eaten’ by the strep infection! Another question to ask the Oncologist.  Boob is softer, 'hangs' better and is looking more like a boob!

Weekend away – had a weekend away from Saturday 16 Feb to 18 Feb to Lake Windermere where we stayed at a hotel to celebrate my brother’s 70^th birthday. 5-course dinner on Saturday evening. I didn’t feel stuffed at all. Up for a hearty breakfast Sunday but I didn’t really eat that much and then an hour later the guts began to ache! What a time I had. There was no way I could leave the room, had to be close to the loo and just slept most of the day. Was just able to manage getting home on the Monday but for the rest of the week I was trapped indoors. Just did not want to do anything. I have no idea where this came from. At the moment I am inclined to think that it has something to do with a cumulative effect of the Paclitaxel. So no big dinners for me until the chemo is finished. Sigh!

Type 2 Diabetes – District Nurse came 4 Feb to ‘change my dressing’ on the lesions. These were clearing up under my administrations so she didn’t have to do anything. I had stopped the plastering of my boob with the silicon and Allevyn plasters and just ‘plastered’ my boob with the E45 cream to deal with the intense itching and peeling. Just ‘knew’ somehow that this was the right way to go. The District Nurse did take my blood glucose which was 8.5 – far too high. However this has to be measured against eating breakfast within the 2 hour window. Another District Nurse came on 23 February where the reading was 6.0 – in the normal range. I had checked up on this and made the investment into a blood glucose machine to rule out this type of diabetes as a cause for my fatigue. Type 2 diabetes causes fatigue and they say there are no outward signs to tell you you have it. Well there are. Just search the web.

Peripheral neuropathy – think I have a bit at the end of my thumbs and forefingers, both hands. Nothing much to worry me but they do feel a bit ‘dead’.

Lung clot – still taking the tinzaparin (innohep) for this. Now finding that any blood taking or chemo infusion is leaving massive dark bruises. Hadn’t been doing any bruising until blood test on 14 February which still hasn’t gone! Anyone know why this is happening now? Are my veins breaking down? Do we continue with the tinzaparin? Is this an effect of a resolution of the blood clot in the lung? So many questions. More questions for the Oncologist.

Hair is still growing though a little too short (and still cold enough) so I still wear my hats, no mouth ulcers but I do have a metallic taste sometimes in the mouth, Yeuch!, not taking Ramipril (blood pressure tablet) as Pac KNOWN to reduce blood pressure, not taking the oral morphine now – there are still grumbles in the boob but only light twinges which pass quickly.

So, at the moment, I am ‘becoming’ well again, I hope. I also hope there is nothing more down the line to come! Need answers from Oncologist! Love and virtual hugs to all on this journey.

Hi , pleased to see you posting .......you might find the “ bruising “ from the tinzparin injections is due to low platelets ( from paclitaxol ) .....you should only be bleeding from capillaries I hope and not veins .......but of course , ask a medic ! Best wishes......Also , I just wonder if you have looked at keeping your hands and feet cold during paclitaxol, I have no idea if this stops peripheral neuropathy , but it wasn’t mentioned to me until too late .....,again , please ask someone ! X

Hi ,

Good to see you posting and glad you are feeling a little bit better. Looks like the chemo/rads has worked on the boob as the skin is intact so hooray for that xxx